Karen's Page

2008-05-14T17:18:00.000-07:00

Hi to anyone who is still checking this blog.

Well, it's been 2 1/2 years since my last surgery - the big mother of all surgeries. It's also been almost 2 year since I finished my chemotherapy. It's strange to even think of that time now. Our family has settled in to a nice "normal" routine involving church, school, and sports. Hudson is now 6 yrs. old and is enjoying first grade and baseball very much! Tucker is 10 yrs. old and is doing well at school, his sports and his french horn. My life has changed a lot.

As you know The Pendleton Foundation was born out of my experience with having to raise money to have the surgery that would best save my life. The foundation has grown into a nice little business. I started working there in October, 2007. I go in almost every day and work until I have to get home to the kids at 3:00 p.m. I'ts been a little difficult going from a "stay at home mom", volunteering at school and church, to working almost full time. It's been great to help shape how the foundation is run. I've accomplished a lot, but I want to do so much more to streamline the operations. We get up anywhere from 2-10 applicants a week. The needs vary quite a bit. We focus mainly on household expenses while a cancer patient is in treamtent: going through chemo, radiation or surgery. There are so many needs that sick people have. I wish I had more money to meet them all. Maybe some day we will! But for now, we will focus on the household expenses.

There are a couple of cool things that have come out of my experience working for The Pendleton Foundation (TPF). The main this is all of the really neat survivors I have met. I wish to meet more, in person, in the future. Time does not allow it right now because we are getting busier and busier! The other, more recent, event is seeing the birth of another foundation. One of our recipients was a little baby who needed treatment at St. Judes Hospital. The baby is now doing very well. In response the the great generosity of the foks here in Coachella Valley, her parents have established a foundation to help families of children with cancer!!! That sounds familiar doesn't it? I'm really excited about it!

One of the reasons why I decided to post after all of this time is that it seems that cancer is affecting more and more of the people that are close to me. This may be happening because of the community of survivors, social workers, etc.... that I'm involved in. Some have said that I'm their inspiration. It has brought to my mind who my inspiration was. I think that when you are diagnosed with cancer, you rely on the advise from those who have had it before you. Then you progress in to a role where you are the one giving advice. It's domino effect, except instead of knocking each other down, we build each other up. My friend, Skip, comes to mind specifically. He was one of my first phone calls after I was diagnosed. I called him when I found out how much money I needed for my surgery. He helped organize a fund raiser for me because he was the recipient of one. I know he since has organized another fund raiser for another mutual friend of ours. He was, and still is, so giving of his experience and time. He, most importantly, prayed with me. He was so strong and I know he helped more people than just me. He also supported The Desert Cancer Foundation by speaking at their fund raising events. I know people were inspired by him in that avenue as well. He was, and still is, a great role model. My point is that I'm so glad that I had someone to pattern after how I chose to react to my disease. I'm so glad he was there to show me how to be strong and positive and faithful. My hope is that anyone looking at me will also see a strong and faithful person. I am not perfect - I get angry, have doubts and question God. But not for long.

Thank you Skip - from the bottom of my heart. You have made an impact in this community.

El Bloggo on the net

2006-10-18T22:39:00.000-07:00

Where have I been? Oh, yes, that is the question. Since chemo has ended we have been remarkably successful at getting back in to what I would deem a “normal lifestyle”. Shoot, it has been so long at that now that I don’t really expect that anyone is reading the blog any more. In fact you may be the only one, and if that is the case then I write these words just for you.

It’s funny how in life you grow accustomed to things and make changes to accommodate and accept them as more normal the longer that they live around you. Since the surgery and chemo are done – in fact we are 1 month away from the 1 year anniversary of the procedure – I have grown used to the necessary changes in our lives and at this point, I have to tell you that things are pretty much normal. Sure, Karen visits the doctor every three months for tests and scans, we are on the lookout for strange things happening to her every day but . . . .it is not something that we wake up thinking about. I am used to the zipper that runs up and down her middle and it is now a part of her but not as a constant reminder of what she has gone through but rather as a part, now, of Karen. No big deal.

So it’s over for now and it may or may not come back. How’s that for a strange, vague outlook? No matter, it is what it is.

I am finding it difficult to believe that we are upon the one year anniversary of the surgery which also means that we are fast upon the two year anniversary of Karen’s cancer. You know, if you think that time flies fast in normal life as you get older, I submit that dealing with a cancer accelerates that by a factor of at least three. Where has the time gone? I surely don’t know but I do say this: I am looking forward to being home for the month of November, to having the family out for a real Thanksgiving holiday, and for a Christmas season filled with activities not based around home care and post-surgical trauma. ( I think Karen feels the same way. Ha!)

The second annual Chef’s Auction is only a few weeks away and it is going to be a great one. We have 20 of the Valley’s best chefs on board and they are going to be auctioned off on November 9 to raise money for the Pendleton Foundation. I think Karen has briefed you on this, so I will not re-do that but if you are in the valley and available that night, get your buns over there. We will be there, it will be a great deal of fun, and hey! You too can have your own chef for a private dinner and you can’t get that on Ebay. Don’t be shy! Call now and get tickets!!!! Talk to Gina at 760-202-6157 or get on the website and set it up. Don’t worry if you weren’t at the last one and don’t know what you are in for . . . neither do I!!!!!

Take care, all. I move forward in my new mental state!

El Bloggo

In the swing of things!

2006-10-17T10:07:00.000-07:00

Hello Friends,
Well, I'm approaching my first year anniversary. I had my cytoreductive surgery with heated intraperitoneal chemotherapy on November 10th, 2005. I finished my folfox + avastin chemo on June 16th, 2006. I'm feeling pretty well, though not 100%, yet. I say - yet - because my energy level improves slowly and steadily.

Meanwhile, I've reentered my life. I am keeping quite busy! It seems I am more busy now than I was before my surgery! I'm trying to help in my kids' classrooms, at the school and at church. Tom and I are also pretty active right now with the Pendleton Foundation (www.thependletonfoundation.org).

Our fundraiser is coming up November 9th at Rancho Las Palmas. See the website for more information. The Foundation popped up after the community came together to raise money for my surgery. Everyone involved wanted to continue to help other people who face fighting a rare cancer. One of the things that is most frustrating about having a rare cancer is finding and getting to the doctors who have the most experience with the kind of cancer you have. So the foundation was formed to help patients get to the specialists they need to consult with and then help with any medical treatments. Everyone involved with the Pendleton Foundation has a heart for this cause.

Now, more personal information. I have been really struggling with overcomiting myself to things. I'm so eager to be active again and have a new desire to help other people. However, my energy level can't keep up with my ambitions. I'm trying to find the balance between, family, sports, church, school and Jazzercise. It seems that every sport my kids are involved in requires parents volunteers. I don't mind that, but it's hard to fit in! Jazzercise is a blessing in that it really helps me get stronger and blow off the stress of the day. I'm really thankful for my students and fellow instructors who support me so much. They don't seem to mind when I huff and puff toward the end of class!! People also expect you to be "normal" again. They want you back the way you were. It's hard to jump right back into your life after not participating for a while. I feel like I've been a couch potato for 8 months and am now trying to run a marathon with only 2 months of training. The transition can't happen that quickly! Attending Gilda's Club in Cathedral City has been a great help. The support groups there are great. What I like about it is that the groups are for anyone with any kind of cancer. There are a lot of support groups for colon, lung, breast and prostate cancer. Not too many for appendix/colon cancer! Gilda's club is so great. If you know anyone dealing with cancer, check them out.

Well, I have to run now. I really want to thank you for your continued interest. The adventure with cancer doesn't end when the treatment ends. There are new struggles and challenges. I never expected that.

Love,
Karen

My First Follow Up Appointment

2006-07-25T21:47:00.000-07:00

Good News Everyone!

I saw Dr. Dreisbach today for my first post-chemo visit. I've been done with chemo for a month now. In the mean time, I've had my blood work done (CEA and liver tests) and my first CT scan since "the surgery". My CEA (a cancer antigen) was normal and so was my CT scan (other than my missing parts)!!! This is such great news, I can't even tell you. Tom and I expected to hear this news, because we know we've done everything possible to beat this cancer. But STILL, it was good to hear. My liver tests showed some inflammation, but that is a pretty typical finding, after chemotherapy. We will follow up every 3 months for blood work and every 6 months for CT scan.

How am I feeling, do you ask? Better and better. It's been a slower process than I thought (of course - I want everything NOW), but my energy is coming back. I'm starting to teach some routines in my Jazzercise class, and it feels so GREAT to be back on stage again. I can't do a whole class yet, but am working hard on it!!

I had my hair colored (for the first time since Oct. 2005) and cut today. I feel great about it. It's like I'm getting back to normal. I love the way it looks. Soooooo, things are going great at the Pendleton house. Ain't it great to say that? It's about time - after 8 months of big change.

Anyway, thanks to you all - AGAIN! Your prayers have helped me mend and heal. Only God know what's in the future, so I can't worry too much about it. I only hope that I can keep the lessons I've learned in the forefront of my mind and heart. For example.......1. God loves us and wants us to serve 2. Don't waste any moments in your life on trivial things 3. Prayer works 4. Ask for help when you need it - there are so many loving people who really love to help others 5. Persevere. There are so many others.

Peace be with you all.

Love,
Karen

Let me tell you.....

2006-07-06T13:19:00.000-07:00

Hello Friends,
I'm doing pretty well these days. Yes, I'm sooooooo glad that I'm done with chemo. It was a tough decision for me, because part of me wanted to finish the whole course of treatment. However, my neuropathy in my fingers and feet, was getting to a point that was uncomfortable and wouldn't go away or even lessen, before my next chemo appointment. My doctor said I didn't have to finish because there would be a chance that the neuropathy would become permanent. Seeing as I want comfortable feet to exercise with, I chose to quit. Plus, it seemed the right thing to do. The kids are home from school for the summer and this makes it a whole lot easier. They (and my honey) are so excited that I'm done.

It's taking longer than I thought to get my energy back, but it is definitely improving as time goes on. It's a slow, steady process.

I taught a few routines in Jazzercise earlier this week. It was so great. My students made me cry - they are soooo awesome. However, I think I overdid it, because I was pretty pooped yesterday. Walking to and from the Palm Desert park to see the fireworks, probably didn't help matters! The fireworks were so great. I really love to see them. The boys were excited, but didn't appreciate the long walk.

What's next you ask? Well, we watch it using CT scans and blood work. I will get my CT scan at the end of July. It will be a new challenge, to wait for those results. I think Tom is dreading this part of the whole adventure. What if it comes back? What do we do? I still am of the belief that it won't. It truly is out of our hands, anyway. God only knows and if it comes back He will have a plan by then.

Meanwhile, I intend to enjoy every moment I have. I'm anxious to get involved in the schools and church again.

Thanks for being so patient everyone. There probably won't be as many postings as before. Just know that being able to put down how we feel here has been very helpful in our adventure. You all have been so great. Please keep checking. You never know what we may share with all of you.

Love,
Karen

Chemotherapy Is Over. Film at 11

2006-06-27T19:00:00.000-07:00

Remember that thing where I said that it was kind of nice to ignore what was going on and live a normal life? Well, we have been doing that and it has been working well. We have been on some camping trips, Hudson and I spent a weekend in San Diego with Barnaby and Moby on a trip to Legoland for his birthday (he is a big 5 now), I have been working on what I am working on (ain’t that cryptic?) and school has come to an end. Karen went to the Jazzerjam convention for the weekend last week (She traveled to beautiful Palm Desert, California – a tiring but rewarding 10 minute drive from home!) Tucker is now ready for 3rd grade and is, at this writing, bored already.

Karen has worked through chemos up to #11 and that is where we stand. Her neuropathy has been getting bad, though, and is settling into her fingertips, toes, the bottoms of her feet, and her throat. It makes it hard to do fine motor things with her hands as the feeling is dicey at best, and they are now really sensitive to cold. Her feet feel the same way, and she has had to give up knitting with her toes which is a real shame. When anything cooler than lukewarm is swallowed, she describes it as “swallowing electricity.” Many of the feelings that she has experienced I have not been able to really understand but that particular description hits home. Not that I have ever kicked back a glass of 220V but . . . I get it.

So at # 11, Dr. Luke was talking to her about this and advised her that if she wanted to stop at 11 chemos that would be OK with him because there is a chance that if she continues that the neuropathy may become permanent. “11 chemos, 12 chemos, it won’t make much difference in the big picture.”

Now was I offered this I would hesitate for one, maybe two seconds, and then say “I’m done.” Karen had to mull this over and talk about it for quite a while because if the manual says 12, then it means 12. Not 11, or 13, but 12. Why would the doctor have said 12 if he meant 11? Argh. Scientists.

So we looked at the big picture: Chemo was advised, but prophylactic. (Preventative, for we who speak plain English.) She has done 11 of the 12 which is overwhelmingly substantial. In fact, it is 91.66666666666666666666666666 percent complete.

That’s an A.

Plus the looming possibility of permanent nerve issues is not worth it in itself as we remember that a big part of this journey is Quality of Life as we go, not how much medication can we slam.

Then I applied my Tom logic to the situation, and actually scared myself with the starkness of it. When I first said it, it was almost in jest but it brought into the light the scary as well as the happy:

“ One more is not going to make a big difference. If we have not killed what we are trying to kill by 11 treatments, chances are we aren’t going to wipe it out with one more anyway.”

So there you have it! We are done with chemo. Done. Over. Bye Bye. Our thanks and a hearty “don’t worry about it!” to our meal supporters over this ordeal. We are done!

Karen wasted no time. She is already learning new routines for Jazzercise and even purchased an Ipod for her classes. At about chemo 8 I built a new cart for her sound system and she is now styling.

Our next big hurdle is not a hurdle at all – it’s a Road Trip!!!!!!! This summer’s SANT is to northern Montana. I won’t bore you with the itinerary but suffice to say we are going to travel 3000 miles, most of which I have not seen. We shall burn large quantities of fossil fuels! We are going to camp our way north, hopefully meet up with the Rudds for a few days of camping and then get with the whole Kepke clan for a week at Swan Lake, Montana. We are leaving at the end of July and coming back mid August. I am very excited, can you tell???? Moby is ready to go, and Barnaby is getting ready. I have been blessed with not only a place to keep him inside, but a place to keep him inside that is a fully equipped shop! I am giddy, and a now that I don’t have to do the little things in the street in front of our house, I have some odds and ends underway that I have needed to do for some time. So for the first time in his 31 years, Barnaby lives inside! Sure, this is not a big deal to anyone but me . . . but humor me. The entire family is counting the days and I do think it is one of the most anticipated trips our family has gone on in a long time.

So now what? Are we done?

Well, we hope so. Hope must spring eternal and to that end we will settle into a mode of checking on the cancer every three months or so with blood work and the occasional CAT scan, although we hope to catch any offenders long before they are big enough to be seen.

I think, for me, that this will be the most stressful part of the trip so far because there is nothing happening. We are not doing surgery, going to another specialist, or doing chemo. If there is something still there, this is its chance to rear its ugly head and then we have to react to it. I hope that I do not become like some of our more senior citizens in the valley who simply live between doctor’s appointments. I will do my best not to do that. I don’t know if I will feel good about these quarterly check ups because of the continued chance that there is nothing wrong, or that I will dread them because of what might show up.

I know, I know. I KNOW. I am the optimist, and I have always preached that you can’t worry about the future, but I may soon find that easier to say than do. On the other hand, my faith is going to continue to be the major player here and I must remember that 1) this is God’s plan, not mine or Karen’s and 2) I don’t/can’t/won’t/don’t need to know the timing of what may or may not happen. Deal with today.

The good news is that we have done everything there is to do to kill this thing. We could not have done anything more. Period. There were no more ectomies to be had – and I know!

I find it interesting to review some of the things that we heard and/or people heard going in versus what really happened. Most of them you have read about in this blog but it is worth having a look at again.

Tale: No way to treat the cancer. Just do a couple of operations and you’ll be done in a few years.

Fact: There were lots to do. Surgeries, chemo.

Tale: The Sugarbaker surgery requires removing all of Karen’s skin.

Fact: Skin in tact. Missing may parts, but skin looks great.

Tale: There was virtually no chance of surviving the surgery.

Fact: Duh.

Tale: Karen would be in a coma for 5 days.

Fact: Karen was coherent with her eyes only a few hours after the surgery. Fortunately or unfortunately she was not in a coma for 5 days. Can I get an Amen, Mark?

Tale: (one of my favorites) No one has survived this surgery.

Fact: Ha!

There are more, surely, but I can’t remember them. It seems a long time ago.

So I sign off for now, and we will continue to update the blog from time to time.

I promise.

El Bloggo

Chemo #11

2006-06-19T10:55:00.000-07:00

HI Friends,
I'm done with chemo #11. So far, I'm doing okay. The neuropathy (tingling/cold sensitivity) in my toes and feet have worsened. I expressed my concern to my doctor and he said, if I wanted to, I could skip my last chemo treatment if I felt the neuropathy was too bad. Apparently there's a possibility that the neuropathy can stay permanent if the symptoms get bad enough. I really don't want that to happen. So, I'm in a quandary, really. I don't want permanent neuropathy, but it feel weird about not finishing all the rounds of chemo. I'm not sure how I feel about it. My doctor is in the business of curing cancer, so I'm sure he wouldn't have suggested stopping the chemo if he thought it would harm me. So, I could use some prayers to help me decide what to do.

School is out and the boys are very active. Fortunately, they are attending Summer Spectacular at Southwest Community Church this week. I can't wait to hear what it's like. I am not volunteering, for the first time in 3 years. I miss it, but knew that I would be rather unreliable. Tom, of course, is participating as Captain Smirk. This will be Hudson's first year to experience all of the venues of the program. I can't wait to hear what he thinks. Pastor H does such a great job reaching the children. They had 800+ kids already registered. So, this might be a record breaking year for attendance!

Well, that 's if for now. I'm really tired of the chemo treatments. I'm surprised at my reaction, since I'm almost done. I thought I would be more excited about being so close to finishing. But all I can think about is how tired I am of being tired!

Love,
Karen

Chemo #10

2006-06-05T18:10:00.000-07:00

Well, it's done. Chemo #10!! I only have 2 more left - phew. This round is kicking me in the behind, though. All I've managed to do since Friday, is a couple of loads of laundry and sleeping alot! And I mean a lot! For whatever reason, I'm totally exhausted and nauseated with this round. It's hard to deal with, because I usually, at least for part of the day, feel decent enough to accomlish something. But 'tis not the case this time. The neuropathy has spread to my toes now too. That's a wierd feeling - tingling in the toes. And my fingers are more sensitive again. I had to get the gloves back out to get in the refrigerator.

So, since it's hard on me, it's also hard on Tom. He's really had take over a lot this time. Fortunately, we are still getting meal support - such a huge help. Thanks to my friend, Leslie, for the angel coin. I really love it. I'll carry it with me.

I keep thinking about when all of this is going to be over. I can't wait to have energy enough to give back to my friends and community. I also can't wait to teach Jazzercise again. I really miss it. I love attending classes, but am steadily getting antsy (a word?) to get back on that stage!

The weather has been pretty horribly hot. So, the boys are currently in the living room, playing light sabors to the music of Michael Jackson's "Beat It". Tom is too funny. He bought season tickets to our local water park. Hopefully we'll use it a lot.

He is growing a beard for his upcoming role in the the VBS production at Southwest. I really like it! We'll see if he keeps it after VBS. He may be too clean cut for it. My honey.

Well, I just wanted to update you all. I'm hoping to wake up tomorrow feeling a whole lot better.

Love,
Karen

Thanks

2006-05-23T09:03:00.000-07:00

Hi Friends,
It's been 4 days since my last chemo and I'm doing okay. Afternoon naps help and of course, the wonderful meal support that I'm receiving from good friends from the MOMS club. If you don't know anything about the MOMS club, check it out. It's a nonprofit organization for mothers who decide to stay at home with their kids. They organize play groups, activities, parties and evenings out for the mothers. I've been a member for 8 years! Here's a website
http://laquintaindiomoms.tripod.com/who.html There are other local chapters as well.

So much for my MOMS Club commerial. They have supported me so much through this adventure of mine!

I've also received so much from my Jazzercise family. Thanks for the meals, and to the fabulous instructors who are teaching classes for me. A very special thanks to my students who are hanging in there for me. I miss teaching and hope to be back at it by mid - July. I'm trying to get back in shape, though it's difficult.

I've also received so much help from my church family and small group bible study. They have lifted me up in prayer and it helps me so much. I've cried with them and their prayer and emotional support has shed light on a difficult situation. I know that Tom also appreciates our church family.

Another place where I receive support is through the Gilda's club in Cathedral City. It's a wondeful organization that provides support groups, social activities and informative speakers for cancer patients and their friends and family. Here's the website. http://www.gildasclubdesertcities.org/

If I'm sounding like a commercial, forgive me. What has brought all of this on, you ask? Well, in talking with a friend, who has been newly diagnosed with cancer, it brought to mind all of the wonderful support and love that I've received throughout this ordeal. I haven't even mentioned my family, neighbors (Linda - who gives me flowers near my chemo days) and my friends at the Pendleton Foundation. Anyway, I feel that it's hard to fight this disease alone. Tom and I tried, at first. It's so much easier to let people help you.

So, once again I'm feeling very grateful and have a full heart. I don't know how to thank everyone.

Love,
Karen

Grand Canyon Part 2

2006-05-16T21:16:00.000-07:00

I blog again much later than I had anticipated, due to my annual finger injury. Yes, it seems that I am developing a habit of mangling a finger on a yearly basis and much to my chagrin, last weekend was the day.

I had just built a frame and installed a shiny new power ventilator in the attic so as to pull the cooler air in to the space and push out the really hot stuff. It figures that here in the desert, “really hot” in the summer is probably about 140 degrees up there, and so it makes sense that if I remove that and put in the “cooler” ambient air temperature of 110 degrees, we should reduce the load on the a/c in the house.

So I did that.

After it was installed and wired I was unhappy with the amount of vibration that was being telegraphed into the house in the form of a buzzing noise. I was up in the attic, and had adjusted the far two fan mounts and was reaching back across the fan when ZING the fan started making an awful noise. Once I looked at my finger, I began mumbling awful noises as well.

Now, before you go off on a tangent about not turning off the fan before sticking my finger in it, let me just underline that it is difficult to adjust a buzzing machine while the machine is not buzzing, hence my approach. Granted, my finger would have been far better served had I allowed a little more margin for space, but . . . I did not.

So now, my finger is well enough to write. The nail bed will hopefully heal and the the bone fracture from where the fan blade gave it a rousing “hello” will heal up as well. So there it is.

So back to our trip. After we had landed in Williams, we were ready to go right away. The entire town has experienced a renaissance thanks to the success of the railroad since it was purchased and revitalized in the late 90’s. I am here to tell you that they do it right, and have a right good time doing it. The equipment is wonderfully restored, and they run the operation just like (and better than) Amtrak. They have their own hotel right at the train station, as well as their own food services (which you can patronize at the hotel and which also provides box lunches for those at the canyon), a dirt lot set for the morning shootout show before the train leaves, a tremendous gift shop and ticket windows. They also organize bus tours at the rim, mule rides, overnight packages, and hikes. It’s well done and the thing that really impressed me was how friendly the people are. What a nice change to hear someone reply to a question with a smile, good information, and in a language that is understandable to the letter. I don’t miss the shrugs, mumbles, and pointing of many of our locals in that respect.

As is my usual weakness in places like this, I stocked up on books by the local authors about the canyon and the railroad, as well as a neat mile marker guide to the railroad as you travel to the rim. My favorite book is called Death in the Grand Canyon, and it is a fascinating story written by two adventurers and river guides. The most frequently asked question about the canyon is “how many people have fallen off the edge?” This book answers and chronicles all know deaths in the canyons, on the trails, and on the rivers as well as air accidents above it. Did you know that until the 1980’s the worst air distaster in history happened over the grand canyon? Two commercial airliners collided and spilled themselves into the canyon and all 200 plus died. Who knew? Great stuff!!!!

So each day the train returns from the canyon at 6:15pm and from it pour the mass of humanity that has been there and done that. The railroad says that by taking the train to the rim, they save over 86,000 car visits there every year, and I am believing it. But having seen the Grand Canyon Village I cannot imagine driving there in my car or RV, because there just is not that much space there.
As the train arrived that night, Karen took a load off on the couch and stayed behind while the boys and I walked over to see the trains. In the non-peak season they run restored 1950’s diesel engines that they purchased from the Canadian Railways, and they are beauties. Since the boarding areas run literally up against the rails, you are one on one with the trains as it should be. Hudson was in awe with the big Diesels quietly idling at rest, and he identified many of the parts like the brakes, the horn, the hoses, and the “power car” which is a rolling power plant for the train’s lights and A/C. Once within a few feet of them, however, he was really taken aback by the size of the machines. All was well until the whistle blew signaling that the train was moving, and that about scared him out of his socks. He was then keen to walk around a bit and head back to Barnaby, which we did.

That night, as every night that we were there, the wind blew. This prevented any kind of fire for roasting marshmallows so we fired up the stove and the boys gorged themselves on barely-roasted puffs. Frankly, for as long as they DON’T actually roast them one could use a match or even a picture of flames to roast them the same amount and it would not matter.

That night the boys and I slept well, and Karen did not. This is normal because her first night at altitude is always lousy, even if she is very tired or had a tough day. But it was all right and the next morning we were on site at the cowboy shootout theater where we watched some pretty cool cowboys do a routine with guns and blanks that was pretty neat, except for one thing. When they would shoot at each other, even with blanks, they would aim at the ground. So if I was going to shoot . . .let’s say . . . Mark in this show, even though he was 50 feet away across the paddock, I would aim just forward of my own feet and fire, and then Mark would fall down. Call me a stickler for authenticity but dang, can’t you even pretend to pretend that you are filling the guy with lead? Don’t get me wrong, I did not find that this particular tactic in any way diluted the fun factor of this officially cheesy tourism trap-type show, but I was aware of the discrepancy.

The first train came and went, and it was 12 cars full of coach class. These folks had the bench seats and were packed in subway style with open windows and the smell of fresh dust in their nostrils. Sounded like fun on the way out, but on a hot day coming back? Mmmmm . . . not so much. The trip is 2:15 one way mind you but after a while, mass transit gets a bit prickly on the backside.

The second train was a magnificent restored streamliner, with parlor cars, three observation cars (with the glass domes on top – no children allowed), a dining car, and several first class cars. We went first class, and the name of our car was the Anasazi. Each first class car has an attendant who serves you drinks, champagne on the way back, and prepares the buffet both directions as well. These cars are completely restored as well, featuring nice upholstery, working air conditioning, and restrooms. Actually, the men had a restroom while the ladies, I am told, had a restroom and a private lounge that was something to see. I know both boys went to the bathroom with mom just to witness it but I could not pull off the kid-with-mom routine so easily.

Our seats were assigned, and we had two and two facing each other, and sharing a huge picture window that looked out over the landscape. It was fantastic. And for all of you going to the Grand Canyon to take the train . . . take it first class. It was not that much more than coach, and we had our bus tour tickets all ready for us on board, got recommendations from our attendant about where to go and what to see as well as some tips on what to do at Williams.

The last thing before you leave the train at the village is a cold bottle of water to get you started. Fantastic! We disembarked, walked around the station, and there waiting for us as promised to a T was our tour bus. We climbed on board and were off almost right away. Having only about 4 hours the way we did it required movement of the most perfunctory and organized fashion.

Now, apparently once a season the Grand Canyon is inundated by flies in an invasion that lasts about two weeks. These flies don’t bite, they don’t buzz your face or really annoy you in any fashion by themselves. But when they invade by the millions (not an exaggeration) they become a pain.

And they like white. If you were wearing white or driving a white car you literally had hundreds of flies hopping on board to join you for your tour of the Canyon. Some folks really took this hard and would not even leave the bus to look at the sights because of all the flies. Wimps. Granted, after a ten minute stop they were literally piled in mounds on the buses’ white wheels, and my shirt carried a good hundred of them at all times, but what a great memory!

I am not even going to address the Canyon. How can one even begin to put into words the majesty and scale of that monster ditch? I cannot and will not do it the injustice of trying so suffice it to say that if you have been there, you can dig it. If you have not, it is something that you must do. And the funny/sad thing is that we did not even explore the canyon itself. A hike down Bright Angel trail (where the mules go) is 4 ½ miles down and 8 miles up, and that is a two day hike. There is not motorized access to the floor of the canyon for the public so if you hike it down, you are hiking it up, brother. We will go back and try it some time.

We saw people hiking the trail, and we saw people riding the mules on the trail. I thought that the mule thing sounded like a pretty good idea and then found out that there is a 200lb weight limit for people riding the mules. 200???? I have not been that small since 6th grade! Don’t they have Super Duty Mules with a turbo diesel? Get with the program.

But I digress. After a firm discussion about staying away from the edge )reinforced by the accounts that I had been reading in my book), our first stop on the bus gave us a truly mind-boggling view of the canyon. Most of the intense look out spots are railed for your protection, but between those spots you have to use your brain. Well, within about a minute of leaving the bus who should step off the trail and beeline towards the edge to get a better look?

Ideas?

Who could it be?

Yep. Hudson casually leaves the trail and strolls towards the edge. I let out with a bark of “Hudson, NO!!!!!!!!!” and yanked him back on the trail before he could say ‘gravity is not my friend’ I don’t think that he has ever heard me yell at him in that tone of voice, and it scared the shi-ite right out of him. He sniffled and cried and mommy made it better but he stayed far from any random edges for the rest of the day. So cheeky.

After the bus tour Karen, Hudson, Tucker, and I sat down with 1,243,833 of our new buzzing friends and had a box lunch at the train station followed by a stroll through the village. It was pretty good but a bit on the warm side, I must say. The hotel is truly a wonder and is one of the Harvey houses that we have come to know about and visit whenever we can. If you are not familiar with those, google Harvey House and read about it. It’s a slice of Western American history that is still alive out here in the form of restored houses. If you like western stories with a bit of Railroad history, you’ll like this one.

Four hours with the guys was just right. We boarded our train home, sat in our same assigned seats and let our attendant attend us. The car was cool and comfortable, and there was a little buffet of snack and drinks for us in our car. We were also held up by the bad guys from the shootout that morning. They come a-ridin up along side the train, dust flying and guns a blazing, and the next thing you know the train is stopped and they are coming through the cars talking hold-up talk and demanding money. The boys forked over a couple of bucks but the most priceless moment on our car was when the cowboys were talking to a little girl across the aisle from us who was terrified of these guys. She sat with big eyes and told them not to shoot the guns, and one bandit announced to the car that there wouldn’t be no shooting ifn we was to fork over with the money.Everyone was having a good time, Tucker was telling them that they should get a job and earn their own money while Hudson was worried about the noise if they did shoot their guns. The little girl, however, had a different idea.

“My mommy has LOTS of money!” she wailed, pointing at her mother the next row down. Priceless. The bandits gave the boys empty shell casings from their guns, and moved on the terrorize the next car.

We got back right on schedule, and walked back to Barnaby. After a quick dinner and showers for the guys we all hit the sack. It had been a great day. I cracked open my book and cross-referenced all of the points we had visited with the deaths that had occurred there over the last 150 years. Cool stuff. ( You know what I mean.)

Most of the deaths at the Canyon have been male, and young. Hmm. Go figure. Very few women have died at the canyon of their own mistakes, and no one has ever died on a mule ride. Their safety record is 100% for almost 100 years of running 250 trips per year up and down. Now that’s cool.

That night we had a wopper of a storm. The wind blew and the rain pounded and it got cold. Barnaby was a chatter with the blowing rain and wind but we slept soundly, warm as bugs in a rug, and remembered the Canyon.

What an adventure.

There were more to come . . .

Getting ready for #9

2006-05-16T15:11:00.000-07:00

Hi Everyone,
I bet you're wondering, "where has Tom been?" Well, if you are, here's the scoop. Tom installed a roof fan on our house a few weeks ago. He wasn't happy with the volume of noise it created, so in trying to fix the problem, he got in the way of the fan and it sliced through his finger nail and down to the bone. The tip did not come off. Off to the urgent care he went for xrays and one stitch. So, typing has been a little painful for him for a while. He was just about to return to blogging, but now he's sick with a sore throat. So, maybe I can convince him to blog while he is convalescing. I'm sure you are anxious to hear what else happened on spring break - weeks ago!

I receive #9 chemo this Friday. These past two treatments have been affecting more with nausea and tiredness. The neuropathy (cold sensitivity and tingling fingers) isn't as bad as it was. I mainly have the tingling sensation and a little cold sensitivity. My throat still reacts to cold things, though. Bummer. I really miss ice cream! It's one of my favorite desserts and I can't wait to have some!!! Ahh, I'll just have to wait until July. Thank you to all who have provided meals for me and my family. It really helps me so much.

I'm excited as the Pendleton foundation continues to take shape and get ready for our fund raiser on December 14th. I really hope this foundation will always remain in the future. It would be nice for something really awesome to come out of my experience. We have so many wonderful people working on it. I'm very blessed to have such quality people be interested in an unusual cause - rare cancer support.

Well, I hope everyone is well. I am feeling pretty good about how things are going. I can't believe I will be done in July!! I've been asked what I have to do next, after the chemo is over. Nothing!!! Not really - I have to have CT scans and blood work drawn periodically to make sure the cancer is gone.

That's it for now!!

Love,
Karen

Chemo #8 finished!

2006-05-08T13:28:00.000-07:00

Hello Friends,
Well, chemo #8 is coursing through my veins as I type. Kind of a weird thought. It's done, though and I'm in the feeling "icky" - Tom's word - phase of it all. I only have 4 more to go. I love saying that! It doesn't sound like many more, and I'm so grateful because this is getting tiring. Not tiring in feeling fatigued, but tiring in the sense that I'm tired of dealing with it. I get tired of organizing my schedule around the "good" days. I suppose I should feel grateful for those good days. Most of the time, I do. I long for the days when my energy was up and I didn't have to plan my days so carefully. The kids will be out of school soon, so getting the chemo then will be tricky. Fortunately, I'll only need about 2 treatments when they're out. Then I'll be done - in July!! I wonder how long the chemo will hang out in my system? A question to ask my good doctor. I still feel good about my decision to go ahead and do the chemo. I want to be as aggressive as I can with this cancer. I still pray to God that it will be gone forever - complete healing.

Things are going pretty well, overall. My sister came out for a visit, which was so very lovely! We treated ourselves to a wonderful pedicure and massage. She had never had a pedicure before, and I think I got her hooked on them. I know the feeling! She went all out and got a little rhinestone flower put on her toes. It's only 60 degrees in Colorado, where she lives, but she's wearing sandals today!! She felt the need to come see me and I'm so grateful - thank you Mike, Amy and Austin! I also took her to Starbucks for her first time. I know - can you imagine? I introduced her to the wonders of Chai Tea. She called me this morning to tell me that she had gone to Starbucks with her boss and had another one. Maybe I got her hooked on that too?!

Well, that's it for now. Tom should be blogging again soon, as well. You know, he has sooooo much to say.

Travel talk, part Un.

2006-04-27T21:01:00.000-07:00

Chemo 7 is behind us and oh my, we are in the home stretch.

Hey everybody! I am still alive and kicking and just glad to be here. We have been a busy crowd over the last few weeks, and I am glad of it. Life is back into full swing with baseball, traveling, chemo, cracked heads, broken wrists, giant allergic reactions, running away dogs, and other such fun.

Let’s talk about the travel first, shall we? As you know, we launched the SANT (See America NOW Tour) a couple weeks back with the trip to the Grand Canyon. I am glad to report that no matter what I write here tonight, it won’t be enough. So whatever you get out of my ramblings, multiply it by two and that might be about right.

First of, and miracle occurred on Tuesday the 11th. We had planned to leave early on the 12th to arrive in Williams that evening, but as things came together we were packed, fueled, and ready to go by mid afternoon on the 11th. I mean we were READY TO ROLL. This is unheard of.

Karen was feeling well and had done a great job doing the grocery shopping so all that left me to do was pack the trailer, hook it up, get the truck ready, do the bikes, get the cameras . . . well it was a few things. Anyway, we decided to hitch up Barnaby and head for lovely Needles, California that afternoon and break up the trip. So we did. We drove out across the high desert on a road that I have never driven, state route 177. This is a road frequented by river rats and having known a few of them, I understand it. They play in the heat all weekend and then drive back to the valley on this road but I tell you they could almost sleep on it. I have not, in all of my experience (even in Montana and Wyoming) been on such long stretches of truly straight road in my life. One stretch was over 50 (that’s 5 – 0) miles long!!!! You just point the truck and off it goes. I think I felt it try to wander around just out of sheer boredom. Look at your atlas!

Anyway, we stayed at a KOA in Needles that night and the next morning headed west on I-40 (that’s The 40 for you west coasters) and drove. I loved it! I had forgotten the beautiful mesas that are along that drive as you change altitude, and the winding roads that climb up and up until you are at 6100 feet at Williams. It was tremendous, and I was really pleased with the whole thing. What more could I want? Karen dozing next to me, in carp-sleep, the kids in the back not touching each other, the Airstream gliding along behind me while I burned massive amounts of fossil fuels! What a country!!!!

We a thing by the side of the road that someone built in a giant ball sitting up on a pillar. This thing was a good 6 stories high, and open in places to allow a view of the . . . nothingness . . . around it. And then – I love this part – they have built little UFOs and scattered them around the property. They put windows in them, and seats, and even marked them ‘UFOs”. It is wonderful, and a true roadside attraction. As we came upon them, I quickly took the next exit to double back and visit, my mind a raging torrent of ideas about some goofball that built himself a roadside oddity and a souveneir shop that sold two headed alien dolls or goats with no heads from a close encounter. Shoot, as I wheel down the frontage road towards those glistening pieces of Americana I practically had my money out to pay the admission fee, whatever it was. This was a piece of craftsmanship that I could appreciate. I was really pumped up, and I was not the only one; there were some other RVs and a car or two who had felt the same pull and heard the five-note tone on the radio that drew them in.

I think Tucker and Hudson were a little concerned about old dad at that moment.

Then, as I backed the trailer off of the road up onto a dirt path, I saw the dreaded: NO TRESPASSING. It’s someone’s home, and I ain’t on the guest list.

And I tell you, it’s not some low rent junk collector either. There was a Jaguar and a nice pickup truck in the carport, so the owners were in there, they just weren’t talking.

We settled for some pictures and went on our way, but I was pretty pumped. I love that stuff.

We made it to Williams late afternoon and checked in the all-new Grand Canyon Railway RV park. And when they say new, they mean that it is barely finished. Now, it’s a nice place and paved everywhere with new buildings, shade structures and the like, but it is about as warm a place as a parking lot. Each site is anchored by a mighty tree that stands about four feet tall and has a trunk the thickness of a #2 pencil. That’s your shade right there.

But we had full use of the hotel, and were within throwing distance of the tracks and the train station. Williams is a cute town, built along old Route 66 and full of the classic American things that you expect to see: Safeway, Motel 6, toy stores, Indian art stores, etc along with lots of diners and ’66 themed eateries. It’s on the upswing, and most of it is due to the railway.

We had arrived. The boys took off on their bikes, and Karen and I settled in. Tomorrow was train day, and we were excited! We walked down to the station and got our tickets and passes for the train ride and bus tour, and visited the set of the cowboy shoot out, and checked out the hotel lobby and some neat memorabilia that they have on display. At 6:15 the first train of the day returned from the canyon rim so the boys and I walked over to see it. Hudson was beside himself, mainly because it was a classic 1950’s diesel engine restored to perfection and looked a lot like his favorite train at home. The noises left him a bit spooked but who could blame him? It’s a big hunk of machinery, and we were standing next to it and touching it. The low rumble of the engines at idle was very powerful and he was really excited.

Then it was back to Barnaby, into the shower and off to bed for the big day to follow.

And that’s it for tonight. This weekend, we will visit the canyon and all of its bugs, and talk about falling off the edge.

It could happen . . . . . .

Chemo #7

2006-04-20T15:20:00.000-07:00

Hello Friends,
Well, I received chemo #7 on Monday. It went pretty well, though, I'm experiencing the side effects even today (nauseous - yuck). I see a teeny tiny light at the end of the tunnel! If everything works out, I'll be done with chemo July 1st!

One of the frustrating things now, is that I feel I am getting increasingly more out of shape. I can't seem to work out enough to get back in to shape. I go to Jazzercise whenever I feel that I can. I guess it 's better than not going at all! So, I think July will be spent on getting back in shape. I still feel the frustration of it all. You all know that I like to be in shape!

Our trip to the Grand Canyon was more than wonderful!! The train ride was so fun - the boys loved it. It was a 2 hr. ride, and they tired of that after a while. It helped that we took a first class train that had snacks and singing cowboys and indians to entertain us. The Grand Canyon was so incredibly beautiful. I told Tom that I want to start saving up for our next trip, which will involve hiking, a river raft trip and staying over night. Of course, the boys have to be older, so there will be plenty of time. Tucker really liked the Grand Canyon. He said, " Mom, it's so deep, I love the Grand Canyon!". It's nice that he appreciated it. Hudson didn't quite get it, though was appreciative of the fact that if he didn't stay away from the edge, his parents would have a heart attack! We took a bus ride around the South rim and had a very informative bus driver, who really liked his job. He had lots to tell us. The only drawback was that there were a ton of little bugs flying around everywhere. They didn't bite, but were annoying. I was amazed at how people could stand by the awesomeness of the grand canyon and could only focus on the bugs. One lady didn't even get out of the bus because of the bugs. Oh well. We also had the opportunity to explore an old soldier/indian fort, explored the cliff dwellings and toured some caves. All of this stuff is what I love to do!!

That's pretty much it for now. Thanks again for all of your support. YOur prayers mean so much to me.

Love,
Karen

Chemo 6: Half Way Home

2006-04-03T19:37:00.000-07:00

Hey everybloggy,

It has been a time since I rapped at you, so I hardly know where to start. Karen has been doing a much better job of writing down what is going on than I have, and for that I thank her. Days do seem to get away from me right now, as with Karen up and down as she is, my days are so full that they whiz by at light speed. At this point, I think that I have earnestly lost the ability to truly relax. Oh, don’t get me wrong – I have a reasonable facsimile but the times when I am not working or at a meeting and am without the guys, Karen or the dog requiring my attention for something or other. Evenings are always there but I don’t really have the energy then to relax, if that makes any sense. However, July is coming and with that the end of the chemo and then the next phase.

We have been doing a lot of camping with the boys lately, and I am getting it down to a pretty good science. A couple of weekends ago we traveled down near San Diego for an Airstream rally. It rained and rained, and was cold. The folks in the club did not know quite what to do with the boys, however, so we spent the weekend fishing in a pond that purportedly holds massive catfish (never had a nibble), visiting a game room where the games did not work and we had to dust of the well worn air hockey game before the pucks would even slide, and hanging out with Big Al the duck, who was an interesting bird that thinks he is a dog. He wags his tail and lets you pet him, and follows you all around until the next, more interesting human comes along. At the last second I had loaded up a little TV and Tucker’s game cube (which violates all of our camping rules) against the possibility that it would rain on us. And rain it did, so we left Barnaby’s living room in the ‘giant bed’ configuration and turned up the heat. We ate popcorn and raced Mario cart a lot, read books, and watched a couple of movies together. It was really quite cozy and for sleep, only a tent surpasses the gentle pitter patter of rain on top of an aluminum trailer for soothing sleep noise. It was heavenly.

This last weekend we loaded up and went to Cottonwood Springs, which is at the far end of Joshua Tree National park, and although only a 45 minute drive away, it is a world apart. This was a new moon, so the sky was so black that stars were a blanket of sparkles in the sky, and the campground was quite full of stargazers and their telescopes, wandering around in the dark with their little red-lighted flashlights. It was nice. Sean (LB) Roberts got a free pass from his family and joined us solo. We hiked to the top of Mastodon peak, which is a nice hike up from the campground and up on to a rocky little lookout. The boys had a great time, but for the first time in his life, I would not carry Hudson on the hike. He is just too big and I have me to carry! Anyway, he hung in there and but for the last mile when we heard a constant litany of “ I can’t walk any more!” He got back just fine. They went to bed early at their own request without a peep and slept the Blessed Sleep of Children. Especially when they are bedded down in the camper, in their little sleeping bags, surrounded by their own menagerie of carefully chosen traveling companions, their happy and satisfied sleep is the best to watch and I do enjoy it. I can envision the happy memories of the day replaying in their minds as they smile and snooze.

And breakthrough! This is first trip that Hudson has not rolled out of bed and come to wake me up as soon as the sun meets the horizon in the morning. He played on his bed, read his books, and chattered to himself and then to Tucker when he awoke, and finally came out to see me a little later on. It was so luxurious to stay in my sleeping bag until 7:00AM.

Saturday was the second of Tucker’s baseball games this season, and we drove down the mountain to play. We dressed Hudson in his last-year’s Dodgers uniform and he helped me in the dugout with arranging helmets when our team was in the field. He was a cute little mascot but the other coaches wondered why we didn’t play him. “ Because he is four” was a good response and brought a lot of raised eyebrows. So Tucker’s uniform when he was 7 fits the Min at 4. No big deal.

Holy Cow.

True to his athletic career, Tucker has started off his season with taking some serious physical hits in the game. Soccer has brought him kicks to the face, ball hits from 5 feet away in the face, ball hits to various parts of his anatomy, and some spectacular body hits for a little guy. I am talking about the kind of things that make then entire viewing crowd gasp and mutter things like, “ oh boy. That’s not good.” And “wow, what a hit. I hope he can walk.” Or even “ Didn’t that break anything?” Well, in our division this year we have entered the world of kid-pitch baseball – with real hard balls. No more coach-pitch or t-ball. We have moved on. Hence, if you have a little guy on your team that is marginally accurate to the plate, he is designated as a “pitcher “and shown where he has to stand. Toss in a young season and you have the newest of the new little pitchers throwing for the first time at their terrified counterparts standing at the plate. It makes for some interesting moments.

Tucker’s came on Saturday in the 3rd inning. It was this pitcher’s second batter, and Tuck stepped to the plate. He took his stance, just like coach told him to, and waited for the pitch. He took a strike and two balls, and then the man on the mound shot a decent fastball to the plate – if the plate would have been two feet to the inside of where the batter stood. The pitch took Tuck right on the rib cage as he tried to flee the batter’s box and made a resounding, melon-like “THOOOONK!” that I heard very clearly from my station at first base. Tuck went down like a sack of bricks and the crowd all moaned and gasped. I hustled over to the Tuke and he was doing a stifled cry on home plate so I stretched him out by having him raise his arms and making sure that he could breath. He gathered himself quickly, and stood bent over for a bit. After I had ascertained that he was OK, I asked him if he knew what he got for that ball hitting him. He said he did not. I said, “ you get to go to first base automatically.”

His face broke into a pained grin and he hustled as best he could off to first. I was so very proud and the crowd cheered and hollered for him. One coach from the other team noted that he did not even rub his ribs, just got up and went while the other coach pulled me aside and said, “now that’s a tough kid. If my boy took a hit like that he would be out for the rest of the day.” His teammates were impressed too, and Tucker went on to score a run for his trouble. Later in the game he hit a nice line drive over second into right field and drove two runs in before he got stranded on second by the mercy rule of 5 runs in an inning. So Manly! So now, our dodgers are 2-0 for the season.

You will note I keep track of the record, and even of the fact that we won the first game 12-1 and the second 7-2. How? You may ask. Isn’t it all about having fun? The kids all get trophies, right? Wrong. I am so glad to be in a division now where the kids will earn a first, second, third, or . . . . nothing. The winners get the goods.

Anyone who has played in the little leagues where “you don’t keep score” knows that the only people who don’t keep score at your games are people at other fields not keeping score of their games. Every little guy from the 4 year olds in soccer to the 7 year olds in baseball keeps score. Only the painfully politically correct ‘don’t keep score’ in the real world, and I for one am glad to see hard work rewarded this way in team sports. Didn’t win a trophy this year? Hmmm. Work harder next year. Goof off all season and didn’t listen to your coach? That’s a bummer.

I bring that up because it got me thinking on the soapbox level. Now, speaking as a kid who in – I believe- three seasons of baseball did not win one game, you might think that I would be a fan of the ‘everybody wins’ concept. Au contraire. We stunk and I knew it. We never practiced, the coach did not really care, and our sponsor was a gas station that didn’t really mind. I was in it for the ice cream, myself, and that was that. At one of the first practices this year, a mom said to me (aghast) “ I hear that everyone doesn’t get trophies this year! Can you believe that??? Everyone should get one so no one feels bad.” Those of you who know me may note this little sentence as characteristic of words that make me go from easy-going middle aged dude to incredulous dude bordering on mean with a touch of biting sarcasm.

“Well,” said I, sarcasm no doubt dripping from every letter as I strove mightily to restrain the biting words just screaming to burst forth, “ in this league the first, second, and third place teams get trophies and everyone else gets to play next year. How do you FEEL about that?”

She was too self-absorbed to acknowledge my bite. “I just think that all the kids should feel special.”

I recused myself from the conversation on the grounds that I was going to say something and not be able to stop adding to it. When will this political correctness end? When can people again say what they mean and just put it out there without stopping to think how it may affect some snow –elk on the other side of the planet who may feel bad as a result???? Krikey!

Ahem.

Karen is tired of feeling like crap, and so are we. She has not much energy and really misses her former life. It’s a fact that this is her top priority now, to get better, and she is doing a great job. She has hit a rhythm where we know kind of how she feels during the phases of the chemo and we can then plan accordingly. For example, we are going on part one of the SANT next week to the Grand Canyon and she has planned her next chemo (VII) for the Monday after we return. This way she will be feeling her best while we are on the trip, and she can get the most from her time.

I must confess occasional frustration on my part in not being able to count on her for things that I am used to counting on her for. It’s usually the tiredness that gets her and often she will say she can do something for me and then I find later that she just pooped out and couldn’t finish it. I can accept that, though, and get it done anyway. I have to think forward to a time when she can do all of her things again without having her days dictated by how much energy she does or does not have.

She is doing well, though. She can take the guys to school and pick them up most days, and she still works tirelessly on the endless laundry that we produce and on her good days she can go places with us, go to Jazzercise, Tai chi, and her classes at Gildas club. Those are the times when it is nice to pretend that we have a normal life again if only for a few days.

As mentioned above, next week we are going on a trip as a complete family and are going to have a great time. We are packing up Barnaby and driving to Williams, Arizona where we are going to stay at the Grand Canyon Railway RV resort and take the train to the south rim. Along the way we get held up by bandits, and when we get to the rim we are going to take a tour up and down the canyon to see it well. We have not told Hudson about the train part, and in fact have been very vague about the whole trip because if he were to know that there was a major train ride involved, he would not sleep for the next week until we leave.

It’s going to be a nice little road trip, about 8 hours each way, and I can hardly wait .

We have begun in earnest to bring to life the foundation that was born of Karen’s Chef Auction last fall. We have booked the date for December 14 and already have over 20 chefs that want to be involved, including all of those from last year. It’s going to be a fantastic event, and we have incorporated the 501C3 corporation and formed committees to get it moving. We have doubled the number of guests we can have and improved the venue tremendously. I can’t wait.

Enough for now! Have a nice night.
Tom

#6's been a little rougher!

2006-04-03T11:35:00.000-07:00

Hi Everyone,
Yep - I'm half way through the chemo - yeah! It was tougher than the last - something I intend to ask the good doc. about - why? Most likely, there isn't a reason. I suppose it's just a good lesson on taking each day one at a time. I learned that lesson long ago, but seem to have forgotten it! Oh well. I was so incredibly tired this past weekend. It really is amazing. Tom took the boys camping again, which was nice. They had another wonderful weekend with Dad. They hiked a lot, came back to the desert for Tucker's baseball game (Hudson helped out in the dugout) and star gazed. I slept. Thank you to my wonderful jazzercise friends for dinner and flowers! It's such a great pick me up. My family really is grateful. My neuropathy isn't as bad this time, but the nausea and fatigue was worse. I also experienced my lower back pain again - something I intend to talk to my doctor about. Advil takes care of it most of the time. Remember the back pain I had in the hospital? It's like that, but not as bad - fortunately!!

I can't wait for spring break to start. I can spend time with the boys, feeling rather good. I won't get chemo until it's over. I insisted on that. I need to have a life, for heaven's sake.

I'm still feeling a little tired and achey today, but better than before. Progress - yes.

That's it for now. Where' s my hubby, you ask? He's very very busy. He will most certainly blog soon, so stayed tuned.

Love,
Karen

Feeling pretty good!

2006-03-27T14:50:00.000-08:00

Hello Friends,
I just wanted to let you know that this last round of chemo (5th) has gone pretty well. For the first time since I started, I did not get anemic! Yippee! I guess I didn't realize how much the anemia was adding to the chemo effects. I wasn't terribly anemic, so didn't think it could make such a difference. But, apparently it does. My doctor had encouraged me to take more iron, which I had been hesitant to do. Those who know me very well (and if you've read this entire blog from the beginning - you do), I struggle with constipation, so did not want to take extra iron or vitamins. But, I think I'm finding a concoction that works for me. I take fiber pills, eat high fiber cereal and foods, and take stool softeners. Holy cow. I've never taken so many pills in my life. I know I should do this all the natural way, but when your appetite isn't so great, it's just easier to take a pill. So, I take the iron. My other alternative is to get extra iron through my infusion when I get my chemo. I may still do this if the constipation gets too bad, or I get tired of fighting it.

My next chemo is this Thursday. Hopefully I will still be not anemic and it will go fine.

I did feel really tired today, so laid down for a while. I woke up 2 1/2 hours later!!! I guess I was more tired than I thought. Oh well.

All the boys are doing great. Hudson broke his wrist about 2 weeks ago - did I mention it? He's doing fine, though it's feeling better so he doesn't feel he needs his splint anymore. Tucker has started his baseball games. He got some pregame jitters during his first game, but did well. This year will be a huge learning year for him. The kids are pitching now, so he has to learn what a good pitch to swing at is. Tom is busy busy busy. Jack, the dog, is only getting stronger and smarter. I think he's smarter than I am. What to do?

That's it for now. I have to go pick up the kids. I love to do that.

Love,
Karen

Hi everyone!

2006-03-17T15:56:00.000-08:00

My computer has been acting very strangely for a couple of weeks now. So, it's been a while since I've been on the blog. Hello to all of our friends! Here's the latest. I had chemo yesterday - round 5! I'm almost half way - yippee! The neuropathy (cold sensitivity in fingers) is worse this time. Just washing my hands make them tingle - yuck. So, I'm wearing my gloves more often.

Tom took the boys camping to a Vintage Airstream rally. I wanted to go, but it's supposed to be cold and maybe rainy. I figured that the chemo effects will be settling by then, anyway, so opted to stay home in my nice warm, comfy house. Tom will reconnect with some old friends there. Most of them haven't seen Tucker since he was 2-3 yrs. old and have never met Hudson, so it should be fun. They will get spoiled by many adopted grandparents there! There a car museum close by, so there will be something to do if it rains. I packed coats, hats and mittens.

We went up into the mountains last weekend and enjoyed a snowball fight together! It was so fun to see the pure joy the boys had with the snow. We live in a desert and rarely get to see snow. It snowed pretty heavily last weekend, so we packed up and went. We built a tiny snowman and they "body surfed" down a small snowy hill (we don't own sleds). I was enjoying watching them so much, that I didn't want to leave. The wind picked up, however, and the boys were wet so we went home. They want to got back ASAP!

I found a support group through an agency called Gilda' club in Cathedral City. If you know anyone with cancer, or is a caregiver, or even has a friend with cancer - they can join the club. The club is free and so are all of their services. They have support groups for cancer patients in treatment, cancer patients 1 or more years post treatment and one for caregivers of cancer patients. They also have a great group for children whose parents, grandparents, etc... have cancer. They also have fun things like painting with water colors, quilting, knitting, yoga, tai chi, and relaxation classes. It's really great, so I would encourage anyone to look in to it. It's a great environment as well.

Well, I'm looking forward to my quiet weekend. I can stay in bed as long as I want and not feel guilty! I would much rather be camping, but it's nice to be home alone as well. I have lots of leftovers in the refrigerator, so I will be all right.

My next chemo is March 30th. I have been struggling with anemia and may need an iron infusion. We'll see. I'm trying to take the iron orally, but my constant battle with constipation may make the infusion necessary.

Love to you all.
Love,
Karen

Settling in, sort of

2006-03-07T18:17:00.000-08:00

Hello Friends,
We are kind of settling in to some kind of weird new rhythm. I guess the ups and downs are expected and accepted more, by now. The kids know that Mom needs to rest and sometimes they use it to their advantage! Tom expects little from me, which I'm not sure I like. I feel pretty useless sometimes. I try to contribute when I can. He really is getting anal about the house. It's too funny. He never used to be that way. I suppose it's a way to control your surroundings, when you have little control over other things. I was really proud of myself the other night. I actually made dinner (spaghetti - big deal), cleaned up afterward and got the kids to bed myself. I didn't want Tom to have to come home from a late meeting and face having to clean up. This may seem little to you all, but I felt pretty darn good about it. I hope to start going to jazzercise again the rest of this week.

Things that make me feel good: mint tea, tai chi, jazzercise, finishing laundry, accomplishing any household task, spending time with friends.

Things that make me feel bad: seeing my hair come out in the shower.

The hair falling out has been a slow process. Fortunately, I have a lot of hair. I wonder what will be left by the end of my treatments in July. It's taken me a long time to grow my hair long, I would really hate to have to start over. Oh well. All of the yucky things mean only that the chemo is doing its job. I just have to think of it that way. I think I would worry more if I didn't have any side effects - I would wonder if it's working.

Those are just a few thoughts. I"m not as eloquent as my dear husband.

Love,
Karen

Back on the Blog!

2006-03-05T11:58:00.000-08:00

Life is moving by. Weeks have gone by since I sat at the small keyboard here and prattled on about anything. It may be a good thing or a bad thing that I have not written to all of you Blog faithful in a while – that is something that time will tell since many including myself see the blog as an outlet for the stresses of what is happening ergo if I don’t write, I am doing pretty well. At least that’s what I think.

Karen has been concerned that I have not been blogging, and I am not sure if she wants me to Blog so that she can read my innermost thoughts or if she is concerned that you, the faithful, are not being kept up to date. Both are legitimate and perfectly sound reasons for me to Blog, and I think that upon some reflection I have just been happy to have some time to myself to pretend that things are normal for a while. Sitting down and blogging all of this information is therapeutic, to be sure, but it also keeps everything that is happening right up on the surface of life and when there, it must be addressed.

We are in the middle of chemo right now and though life is a far cry from normal, I am enjoying a version of ‘normal life’ right now that is . . .OK. Of course the good news is that Karen is home, the boys are healthy, and I have things pretty well dialed in if I do say so myself. We have chemo every 14 days or so, and for the first few days after Chemo Kristin has arranged for dinner to be brought to us and that’s a huge help. I have started to become strangely anal about the house’s condition (mostly the living areas) and find that unless I have everything in its place and looking nice, I can’t sit. So I have cleared off the counters and am keeping on top of the junk mail that piles up in order that the house looks nice most of the time. My parents were in for a couple of weeks and with three extra people in the house I decided that I could let my little compulsion go –temporarily- and so I did and the house looked like it used to, for a while. But they left on Friday and the manic little house-frau inside of me took over and in 24 hours I had things back the way I like them. I think that I have developed this little tic in the hopes that Karen does not give the big sigh and say, “I really should work on this house.”

I think not. Her job list right now consists of the following:

1. Get through chemo
2. Rest
3. See #1 and #2

And with the exception of the last couple of days of the chemo cycle when she can go to Jazzercise for some light exercise and do a little Tai Chi, that’s what she can handle.

Now, we were told way back in DC that as chemo went along the symptoms would sort of collect and become more pronounced as the chemo progressed. Tiredness, nausea, achy bones, tingling appendages and intolerance of cold were pegged as the most likely culprits and you know what?

They was right.

We are now four days out of Chemo 4 ( That’s IV for you Roman enthusiasts) and it is as predicted.

Chemo days themselves are not too physically draining for Karen. She sits in a chair, surrounded by people twice her age, and they drip anti-nausea medication into her arm for about two hours. Then, in the scope of 15 seconds or so, they inject the chemo in a Bolus dose, and she is done. The hardest part of this day is the mental stress. Here she is, 40, and surrounded by cancer patients of whom only a few seem to be able to operate under their own power. Was it always so? Back in the day, these poor teetering souls were allowed to let their lives end naturally but now . . . I just can’t imagine being as old as some of these folks and putting myself through this. It seems clear that their existence is pretty much planning on the next visit to the doctor. Karen is right. It truly is depressing.

So anyway, the first day is physically OK – for now. During chemo 1 she did not feel much nausea or discomfort for about 48 hours, but in the successive chemos that time shortened up to 24 hours, then 18, and now on 4 she actually felt a bit queasy that evening.

Another side effect of the chemo is the tingling sensation, which has been described as similar to having a limb wake up after being asleep. So far to my knowledge Karen has had a tingly nose and some fingers. I don’t recall her speaking of tingly stuff at chemo 1 but there have been more and more as we worked towards 4. this week her nose was tingly and one hand.

Add to that the strange side effect of being hyper-sensitive to cold, and its quite a trip. No cold beverages for a week, and she keeps a pair of gloves by the fridge to keep her hands warm.

We pretty much know that she is going to be out of it for a week after chemo, and needing many daily naps. She just feels crappy, weak, achy, and generally bad.

It’s a strange rhythm that is setting up here. We are shaping our lives in two week cycles. Every other week is OK, and we have to write off the ones in between.

But we are planning some fun stuff. The war board still hangs on the wall, but it is now a calendar for more fun things. There is an airstream rally in two weekends and although Karen will be at chemo 5 plus two days, she will have a weekend of peace and quiet as the boys and I go for a rally. Most of these folks have not seen Tucker since he was 3 and have never seen Hudson. Should be fun. A good friend of ours, Tom Reed, lost his wife Corrine to cancer about 6 months ago. Strange the way life works, eh?

My mom and dad and brother Jim were just here (as I mentioned above) and while here we got some fun things done. We added the final phase to the Manly 5002, changing it into the Manly 5006XL and we ain’t kidding. It now sports a large 8’ x 9’ deck on top, a 20’ walkway and another smaller area on top of the swing beam. It was great fun to sketch it out and turn a pile of plain boards into a really cool and robust structure. I experimented with steel tube reinforcing so that it is not only rated for adults, but looks cool doing it. The entire neighborhood of kids is enjoying it, and that is the point!

Tucker and Hudson are doing very well. They seem to be at peace with the idea that mom is going to feel bad for a while, and they have accepted it into their routine. I am very proud of them and always appreciative of their smiles and cheekiness.

Hudson is maturing enough that he can play with Tuck on a much better level and for the most part they get along very well.

Tucker did his stand up routine in the talent show, and even with bias I must tell you that he killed on stage. Out of 47 acts, he was the only kid to stand up and face a microphone without music or back up dancers and he wowed the crowd. Got his laugh lines right, schmoozed the mic and even got a little sassy. Man, am I proud. How did I get a boy like this?????

I have been fighting a cold or something for the last few days, and can’t seem to rest enough. Last night Karen and I slept until almost 9:00AM this morning which has not happened in over 8 years. I still feel tired, and commanded myself to not do anything useful today. Tough to do. So I have played with the guys, read a little, and blogged.

So that is where we are. We are 1/3 done with chemo and my gut says that this is going to get a lot worse before it gets better. Our support network remains firmly in tact, and it is on our shoulders to simply use them!

Have a great weekend and I promise, I will blog soon. Exciting stuff coming up.

Tom

Pididdle

2006-02-19T17:14:00.000-08:00

Hi Friends,
Tom and Tucker are away for a camping/Legoland birthday celebration with one of Tucker's good friends and his Dad. I wasn't up to hosting a party this year. He's having a blast.

I lost some sleep last night. I got angry about my situation. This does not happen to me often. I guess it's good. I'm already tired of dealing with cancer. I'm tired of the chemo (I've only had 3 sessions) and I'm tired of it running my life. I want my old life back. I want my kids to see me healthy. I don't want to have to chose between going to church and taking my 4 yr. old to see the Curious George movie, because I don't have the energy to do both. I'm missing my 8 yr. old birthday, because I can't walk around Legoland. I'm missing out. I want to work out whenever I want to. I want to teach Jazzercise. I don't want to get used to laying around.

I want to fight this cancer. I want to beat it. I want enlightenment. I know this is happening for a reason. I know that my God is with me, holding me up, and loving me. My family is awesome. My 4 yr. old thinks it's fun to sit around and watch movies with Mommy (even if I have to suffer through Blues Clues a million times). Forgive me for rambling. I can hardly sort out my feelings, sometimes.

What does pididdle mean? It's a word my mother used whenever she felt frustrated or indignant.

Love,
Karen

Round 3 is done!

2006-02-15T09:50:00.000-08:00

Hi.
Well, round 3 of my chemo is done. It went well, though I was emotionally drained. I really hate to go there. The doctors, nurses, nursing assistants, and front desk personnel are really terrific. Everyone is sooooo nice. I just hate to go. I started out the treatment in tears. The other patients were so kind to try and cheer me up. Then an amazing thing happened. A good friend left me a gift there. It was a dancing and singing red gorilla, for Valentine's Day. That gift couldn't have been more perfect. I played with it, and the other patients enjoyed it as well. I still teared up throughout the morning, but just had to look at my gorilla and knew that I am blessed by such great friends and even strangers, who pray for me.

I feel pretty good today, but I know that starting tomorrow, I will start to feel the real fatigue and nausea. The tingling in my fingers has already started (couldn't peel a orange for my son last night)! Tom's parents and youngest brother are here and are helping out quite a bit. I'm so lucky.

Well, I'm doing my laundry now, while I feel decent. So, I better get back to it. Thanks again, to everyone out there who are praying. Going through chemo is really the pits, but I'll make it.

Love,
Karen

A good week

2006-02-08T15:47:00.000-08:00

Hi Friends,
Hi! I just wanted you all to know that it has been a good week. I have attended several jazzercise classes and have actually made it through the whole class! I'm totally excited about that. It's really amazing the difference in how I feel this week from how I felt last week. That chemo really does a number on you. My energy level is so much better. Still not 100%, but definitely better.
I have come to the realization that my life is not going to be what I want it to be, right now. And I'm not going to feel the way I want to feel. It's been a hard pill to swallow, but I'm slowly accepting my situation. I'm truly amazed at the other chemo patients who seem to have good attitudes. I met one man last week that went golfing with his grandson after his chemo. Amazing. Each chemo drug has different side effects and different time frames when the side effects show up. Maybe his showed up later! I don't know. I still think it's amazing.
I am getting ready for a great weekend with my yaya girlfriends. I hope I can keep up just a little bit. So, shopping, good food and great company are in store for me.

Love,
Karen

Thursday. Status: Ehhh.

2006-02-02T21:14:00.000-08:00

It’s Thursday afternoon, and Karen has weathered the first day just about completely without me, from 6:00AM until about 8:00PM. She hung in there, but when I arrived home to find Tucker sitting on our bed reading to her, not 15 seconds would pass without her cracking into a huge yawn. She’s really bushed.

As we lay there and chatted, I had the opportunity to do something that I have not in several weeks: Do an up close incision inspection. Now, don’t worry, I know that this is a G rated show. . . but what I see is really encouraging. If you all remember, the incision runs from just about her sternum up top all the way down to the middle of her pelvis. From day one it was quite the site, and the stitching for a while was rather red and angry in places. The scar was rather stiff, painful, and rather uneven in how it was healing so of course Karen was rather unhappy with how it looked. Now, however, it looks pretty good for what it is. The tissue has softened up and Karen says that it does not feel so tight and touchy anymore. Cool.

It is strange to see her without a belly button. I know that I have mentioned this little fact more than once but it is such an anomaly that I may never see it as a usual thing. But she looks really good and has definitely returned to her ‘Karen the Hot Jazzercise Mama” look. I am so proud. The lack of energy has Jazzercise Mama pretty frustrated, though.

We are learning to plan with the chemo as part of the schedule, and you’ll notice that I did not say necessarily around the chemo. When Dr. Luke advised us to not live our lives around the chemo sessions, but rather move the chemo to our wiles, well, we took that to heart. So Heed Us, vile substance!

We have plans.

It has been a good week, but I am very excited to have the weekend upon us. I am going to do one of my favorite things on Saturday, and that is to tinker with Barnaby the Airstream pretty much all day. With the SANT (See America NOW Tour) starting soon, he must be in top shape! As his restorer and keeper, I enjoy tinkering with him a great deal as well as making little changes here and there.

We are going to be in town this weekend, and it will be nice to just . . . . be. You know?

Tom

How am I feeling?

2006-02-01T11:36:00.000-08:00

Hi Friends,
This has been a common question lately - how are you feeling? Well, overall, I'm feeling just okay. Which is way better than it could be!! I'm tired and have moments of nausea. I have been able to run errands and such, but usually come back tired. I want to thank everyone who has helped bring meals for my family. This is helping so much right now. You all know that cooking isn't my strongest talent, so it's such a relief not to worry about "what to make for dinner". This time around in my chemo treatment (no.2), I'm feeling more of the cold sensitivity (neuropathy). My throat hurts if I eat or drink anything cold. It's so strange. I tried to eat an ice cream sandwich the other night, and had to warm it up in my mouth before I could swallow it. It took the joy right out of eating it!! And my fingers tingle when I handle cold objects (mostly out of the refrigerator) too long. This is supposed to be a common side effect and will last for a while. Yuck. But, overall, the experience could be worse, so I try not to complain too much.

I had such a fabulous time in Vegas with our good friends. You may know a lot about it from Tom's view (scroll down to his account, if you haven't already read it). He's pretty accurate. I do, however, want to add my two bits about Ricky Martin. I fully expected a evening full of eye candy, watching him perform. He's such a great performer and entertainer. I am biased, but I really enjoy his music. He performed a lot from his new album and some fun spanish songs. I didn't have to understand the words to enjoy it! The light show was great and his band was phenomenal. I can't believe I actually made it through it all. He had a great combination of his upbeat songs and slow songs. I was able to sit and rest during the slow ones. He ended his performance with a call for peace in our communities and world. It was really nice. Ahhh.

Well, that's it for now. Unfortunately, I have not been to a jazzercise class lately. Hudson has been sick, and now I'm too tired from the chemo. But, I will be back to it soon - hopefully by the end of this week.

Love,
Karen

Chemo II is done. So far so good . . . .

2006-01-30T18:38:00.000-08:00

Chemo II is behind us and it was done with much less fanfare than the previous, now that we know a little bit better what to expect.

To start with, Karen drove herself to the session with a packed lunch, a book, and her big toed slippers in hand. She was hooked up at about 11:15, only one hour past her scheduled time, and was home by about 2:00pm.

Today they did not give her the nasty shot to boost her white blood cell count like last time but this time they found her to be a bit anemic so they have given her procrit, a red blood cell booster. We hope that it will not have the same affect on her that the white cell med had on her last time.

So, after the chemo she stopped off at the drugstore to pick up some meds for the Cheekster and then made her way home. She reports that she felt a little shaky for a while but overall not too bad. After she arrived home she put her car away and took a nice 2 ½ hour nap. I believe that she would have slept even longer but she was attacked in bed by a huge, sweaty, and altogether up to no good hot flash that woke her up. There seems to be a trend where the hot flashes are triggered by the chemo and then fade as the chemo works its way out of her system.

But by 5:30 she came downstairs and had some dinner with us, sat with Hudson and read for a while and now is clacking away at her email which has suffered greatly in the last few days, having not been checked hourly.

I talked to my Dad today, and they are getting ready to come out for a visit on the 11th. That should be fun, as I have told the boys that when Popop arrives we will begin work on our Manly renovations and I have warned dad that we have done the prep work and that the guys are going to be looking for some serious results on the construction front while he is here! Oh, the pressure. Actually, I am as excited as they are and it has taken a lot of willpower not to start on the changes before he arrives. The fun part is that since he taught me everything I know about building stuff I can leave him with ideas and drawings and he will “get” what I have in mind, and do it just like I would. That’s pretty cool, I must say.

So the news is good! We will do the daily updates and let you know how she is doing over the next 72 hours and then . . . life goes on!!!

Tom

Karen and the Rickymartin

2006-01-29T20:43:00.000-08:00

Viva Las Vegas, baby!

In my younger years, I had the privilege to visit California on several occasions, mostly for pleasure as a tourist and a couple of times on business. It was big, smelly, and really a fast paced nightmare of a place that left me feeling like if I did or did not go back, it would not matter much. I certainly knew that there were other places that I would rather live than California and besides . . .what were the chances? A small town Ohio boy like me? Come on! While in Detroit, when the possibility that I could be assigned to a place that I really would not like came into relief, it became very clear that there were really only two places in the entire country that I did not – repeat, did not – want to live. One was Florida (too old, to humid, too many bugs, too humid – did I mention that?) and the other was California. Those people are whacked and I knew that if I had to face Karen and let her know that we were moving to Lala Land, life would get considerably more – shall we say – interesting. “PLEASE, Lord”, I remember praying, “not Florida and not California. Okay, if it has to be California, not southern California”.

As Karen and I mark our upcoming 10th year in Southern California, my mind has been made to see that the colloquial view of the world and my reluctance to actually venture out and see the world were poorly founded at best. I have also learned that when admitting something that it is good to bring it into the light and name it, and so I shall.

“ I live in California and I like it.”

Oh, my. That was big. I think I had a bit of a palpitation there. "But why???", you may cry, "those people are even more whacked now than they were then. They have the Governator. Neverland Ranch. Brown outs. If it ain't shaking, it's baking! The people vote on planning to plan! The Baldwin Brothers!!!!!"

I understand, faithfull blogger, truly I do. But I have learned that for the truly short-attention spanned there is no better place than Goofball Central.

There is just so much to do, and so many beautiful things to see here and near by that I feel fortunate. True, after The Big Quake my highly overpriced real estate may be just off the western shore of the Pacific and true, I am fast becoming a minority in a state being changed in culture, but just the same, in some warped way . . . I like it here.

As we launch our See America NOW tour this spring with a tour of the Grand Canyon, followed by Yellowstone and Glacier National Parks this summer, I am reminded of how great it is to live in this corner of the world. Only hours from wonders untold! Hook up the camper, toss in the kids and roll. (That's a laugh. For those of you who have had the experience of 'camping' with the Pendletons you understand that 'throwing in' comprises of ultimately taking along approximately 3,000 pounds of vehicle and gear per person to achieve our kind of 'camping experience in the great outdoors'. Try throwing that kind of baggage and you'll end up with a slipped disk and a hernia. Light travellers we ain't.)

And for many, one wonder that perhaps should remain untold is Las Vegas. Talk about a strange world. I traveled there on business years ago and was shocked by the around the clock culture where there are no clocks, the casinos have no windows, and everything that you could possibly want is available 24/7. Slot machines live in gas stations and family restaraunts; newly planned communities include not only wonderful multi-generational recreation facilities but neighborhood casinos. Did you get that? Whilst touring with your real estate agent amongst buildings and houses that did not exist last year, she points out the new high school, the new hospital, the new shopping hub, the state of the art park facilities and oh yes, here is your neighborhood casino, the Big Flippin Nickel.

Pardon?

I ain’t kiddin, kiddies. This weekend Karen and were the guests of some former Bradford Circle buddies the Zweifels who were ripped from their Bradford Circle home and thrust into Vida Las Vegas. They have been there going on three years, and oh the stories. During a drive through Henderson, which is a booming suburb of Vegas with a lovely view of the strip on a clear night, Julie shared with me that the little casinos scattered throughout suburbia were “neighborhood casinos” and that they were designed to serve a certain market of locals. Zoning apparently only allows a certain density of residents to casinos and as such they were tastefully separated by a few miles from neighborhood to neighborhood. Talk about a jaw dropper. I must have hesitated a two-count and waited for Julie to take that one back but no, dang if she wurnt kiddin. What a world! And everything there in the ‘burbs is new. Startlingly new. If you are a sapling tree and you have accumulated over 427 leaves, had your stakes and cables removed because you can stand in the gale force Mojave desert winds on your own, AND are more than 10 feet tall then congratulations! You are deemed OLD GROWTH! Watch for loggers and beware Midwest transplant residents scoping you out for building a tree house for Junior and little Missy.

Why do I ramble? What can this possibly have to do with Karen? I’m glad you asked. I will tell you. Right now. Ready? Are you sure? Okay, then.

It’s the Rickymartin. About a month ago I got a call from Julie asking how Karen was and if I could arrange to have here in Las Vegas on January 27. Knowing that Julie would not ask this lightly I replied “of course. Why?” Turns out that Dave and she had procured VIP tickets to see the Rickymartin at his one show in Vegas, and they had tickets for us. We were there, because if there is one performer that gets Karen into high gear from a dancing and feminine viewpoint . . . it’s the Rickymartin.

Now, as stated above there are lots of interesting places very close by and as one of them, Vegas is only about 250 miles from here as the crow flies. But in Southern California even crows drive. It’s the culture. So to get to Vegas You can take the Road to Destiny ( with the other millions heading to Vegas on I-15) and it will take you 6 hours of frustrating gridlock to get there. Or you can take the Back way and end up on a nice little two lane highway. (This is the true gamblers route. You are gambling that there will not be any large tractor trailer rigs ambling along at 60 trailed by 100 cars of slower traffic and oncoming vehicles for 150 miles. If you win, you get there in 4 ½ hours and are thankful. If you lose, you may pass the 6 hour mark but get great gas mileage because you will rarely break 55 My bookie calls it a 10:1 on a good day). Or, you can take the locals’ version: the Back Back way.

The Back Back way is a bucket of fun, and with loads of dipty-doos and reasonably nice, lightly traveled roads you can crank up your minivan to a cool 80-85 and catch some air over the dips all the way to Vegas in a cool 3:45. Oh, yeah. And hey. Don’t go talking the Back Back way up now, or it will be history! This is our little secret, all right? In enjoy most of the drive except the part where they have this speed limit thing and there are people living all around. Bummer.

But I digress. On Friday Dave and Julie took Karen to the Rickymartin. At the last minute I bowed out and another friend of Julie’s stepped in to take my place because Hudson spiked a 103 fever and was not happy. So Dave got to escort three hotties in black to the Rickymartin. Karen was elated. She rested most of the day, took a nap, and then went to the show. When she returned she was glowing and said that it had been a great show. The rest of the weekend she continued to proclaim that it was still dreamlike and that she can’t believe that she actually got to see the Rickymartin. I’ve never seen her so pleased with a concert. So I look at this as the first small step towards the See America NOW tour and why not? A Puerto Rican singing Spanish dance songs in Las Vegas during the Chinese New Year? How much more American can one get?

So Saturday we rested and attended a lunch at a cool little restaurant and then decided to take the Tournament of Kings at the Excaliber. This is a dinner served without utensils around a dirt arena. You are seated in an assigned country, and each country (there were 12) has their own King on a beautiful horse that comes out to play tournament games right before your eyes. So, while you pick apart an atrocious Cornish hen, eat really lousy potato wedges, cold broccoli and some leftover rolls, you have a great time screaming “Huzzah!!!!” when your king rides over to see you, and then you toast him. A lot. The show was truly medieval right down to the scantily dressed manservants (which may have been part of the Rickymartin show the night before) before your eyes. I know that they elicited some squeals of approval from the two princesses I was with.

Ahem. So Julie bought the boys little helmets with horns, and me a big helmet with horns, and tiaras for them and we had a great time. There was hand to hand combat, lots of swordfighting, horsemanship games, jousting, flames, magic, explosions – your typical round table type entertainment that kept us all enthralled. Even Hudson, who was a little put off by the loud noises from time to time, was raptly paying attention to the pretty horses and characters in front of him. He was so impressed that he thought it was a movie. It was a great time by all.

Today we traveled back home the back back way and had a nice meal of pizza. Our friend Dr. Rick stopped by to look at hudson’s ear and surprise! Ear infection. Again. Krikey, I can’t wait until he grows out of this deal.

But the bottom line is this. As we ready for Chemo 2 tomorrow morning, Karen has tackled and easily conquered a three day outing to Vegas. Now, that’s encouraging!
We are doing this chemo without the white cell shot that we believe made her so sick two weeks ago so the hopes are up for a great chemo!

We’ll let you know how she is tomorrow night!

I shall be seeing thee.

His Bloggness.

Having fun

2006-01-26T12:13:00.000-08:00

Hi Friends,
I just wanted to let you know that I've been feeling pretty good lately. I got my hair cut and styled today in preparation for our family trip to Henderson this weekend. Tom and I have the very good fortune to be able to attend a Ricky Martin concert in Las Vegas, with our good friends, Dave and Julie. I won't be able to shake my "bonbon" like I once did, but will certainly enjoy the view and music. I think Tom is just putting up with it. It'll be so great to visit with good friends, as well.

My next chemo treatment will be on Monday -right after I get back. It will be interesting to see what side effects might occur this time. It was hard to determine last time, since the shot presented some side effects of its own. I won't have to get that shot this time, so I'll get a clearer picture of the chemo side effects.

The kids are doing great. We all miss Bumpa and Grandma, but it's nice to have our nuclear family back in tact. It also forces me back into my life, which is a great thing. My parents were so helpful, that I was getting pretty spoiled and lazy!

So, have a great weekend and I'll let you know how Ricky looks!

Love,
Karen

Friday wrap up of Chemo 1 - She Jazzercises!

2006-01-20T20:55:00.000-08:00

It’s Friday and here I sit, comfortably back in front of my little laptop computer. I think that I shared this with all of you but it is interesting nonetheless – For many years I used this laptop only when I had to because my hands tended to get stuck on the keyboard and get tangled up with each other. The keys are so close together that I only used this machine when I absolutely had to, and that was not that often.

At work, I got one of those funky looking keyboards that is shaped kind of like an upside down boomerang, and the keyboard is broken into two completely separate halves. This took some time to learn, as any of you who have used one know, but after a time my big hands stopped fighting over key territory and I became quite proficient on that strange apparatus. Only problem was that I could not type on a normal keyboard very well anymore, much less on a laptop.

When we went to DC for the Big Show in November, I of course did not lug along a desktop but rather took my little Dell companion. The two of us had never spent any quality time together before and this experience forced us to do just that. All of the blog entries I have done with very few exceptions were done on this little machine, and now I find it very difficult to type on anything else. Surely it is because I have never spent so much time consistently typing anything and without knowing it, I have made myself a very proficient typist on this keyboard. I am my most verbose here because it is so easy for my to use. I have blogged (as you well know, faithful blogger) from airports, airplanes, couches, beds, hospital chairs, and yes – even perched upon my knees while getting some down time in the Loo. But fear not! I have excellent virus protection.

So here I sit on Friday evening. Karen is downstairs with some friends watching a movie, and I have just gotten the boys to sleep and it is time to say hello to all of you. It has been a very interesting week and we have learned some lessons , I can tell you.

First off, we have learned that after getting the shot to boost Karen’s white blood cell count she feels like the worst flu in the world is cranking up in her muscles and joints. She was literally horizontal all of Saturday and Sunday and most of Monday as well. Tuesday she felt a little better, but it was a miserable time for her. After going to the doc today for the regular meeting and bloodwork, we found out why: Normal white blood cell count for a human ( on this test) is around a factor of 5. Karen’s white cell count today was over 35. What this means is that the pain she felt was literally her bones and marrow manufacturing and cranking out white blood cells. She is actually flowing with these little warriors and we defy any illness to attack her right now! Apparently she reacted way better than was expected to the booster shots and over-produced.

We wonder what will happen on the next course of chemo when we don’t have that shot. It might be down right bearable for her.

Second off, Karen is learning real time where her limitations are. It seems to me that for every minute she spends doing something (something defined as not laying down on a couch or resting in a chair) she needs to rest about 3 minutes. Wednesday she decided to go walk around a bit at the Bob Hope Classic and do some stargazing. It was only 2 minutes away and sounded harmless, right? No. She was home by noon and feeling nauseous and exhausted. She went to bed and napped most of the rest of the day.

Wednesday was also the day that Joyce and Al took their leave of us, and headed for parts more chilly and east. They headed out for a stay with Kathryn and family in Colorado and then home to their house, which has not seen them since before the first of November. They did a great job and carried a huge load for us and we are sad to see them go. It was nice having them under foot.

That being said, Thursday was the first day that Karen and I had to come to some kind of schedule with the boys that would work. Don’t misunderstand – we have lots of standing offers for help with all of this but we have to try, don’t you know? So, just like in the old days I get up with the boys, feed them, make Tucker’s lunch, feed the dog and the fish, and then I leave the house at about 7:30 for work. Karen usually comes downstairs about 8:00 or so and gets the guys dressed and delivered to school. This day she did that, and then went home for a nap. Pooped. In the afternoon, she got the boys home and then dropped Tucker off at guitar lessons but that was it. She called me and asked me to pick him up. She had some early dinner with us and was in bed by 5. she mostly slept for the next 15 hours and woke up rested, but not fully. She has so much healing to do, that she is going to be adjusting to what her body can handle for . . oh . . . the next year.

I see things changing a bit in simple ways. When she gets together with friends, she needs to invite them here. Why spend Something Time driving or ‘getting ready’ to go somewhere else when she can use that valuable time with her friends in our living room? I can keep the house ready to go for her. That’s one thing.

Another is the definition of ‘normal’. Her mind is ready to get back to normal, which for Karen is lots of frenetic activity that while not always efficiently productive seems to be rewarding to her in its own way. But her body ain’t playing. If pre-surgery Karen’s body was running on 100 health and stamina units, the new post-surgery body is running on about 15-20 right now. And there is no little light that tells her she is approaching empty – nosir. When that tank is empty you might as well put a fork in her, because she is done. This is a tough reality for her, and will take some time to adjust to.

For my part, I can work on the house and keep the guys out of her hair during rest times. Now is a great time in their lives for “daddy time” and it is a simple, simple thing to take them with me or have them around working with me on a project or something. For example last weekend we tore up the old foundation of the Manly 5002 swingset and installed new concrete footings in preparation for some new construction that is upcoming and they were there the whole time hauling dirt, moving trash and helping to drill holes, cut wood, and fasten bolts. They loved it and mommy got a nap. This is our new reality. We will have bursts of mommy, but there is a lot rest involved.

But after Thursday’s early night, Friday was approached with a different tack and speed and she has done well today. As you probably read, she even Jazzercised for the first time! Management of her energy is going to be the key. It’s really frustrating for her to be a slug, and very much against her nature. I had thought that the surgery was going to be the hard part of this phase but I think I was wrong. The next 6 months as she goes up and down between chemo and has to be less that the active person she is addicted to being . . .well, that’s going to be the hard part. Surgery? Pshaw, tweren’t nothing for old Tom. Karen at home? Hmmm. Could be a bit more challenging.

But I am still excited. Things at work are busting out all over and it is going to be a great year. Aside from that cancer thing, life at home is a new normal with baseball tryouts coming up and even a couple of camping trips on the books for February! That’s pretty exciting for me as most of you know, because one of my joys in life is to pack up the Airstream (Barnaby, for those who have not met him) and go somewhere. Yeah, that’s right. Somewhere. Not so much the where but the with Who and How long that matters.

Barnaby has been serving Joyce and Al as a off-site home since December 1 and tomorrow I am going to bring him home and give him a good cleaning and wash and shine. For a 30 year old rig he is doing just great, and we hear from his agent (that’s not a misprint. The camper has an agent) that he has an upcoming photoshoot with Bloomingdales this week here in the desert so I need to clean him up good so he looks good for the cameras. What an interesting life.

By the way, I have heard from several of you that you did not know how to access the old entries starting in November to get the whole picture. All you do is go to the right here, and click on the month you want. Remember that this blog is always newest to oldest so if you want to start at the very beginning (that’s a very good place to start) click on November 2005 and scroll to the bottom. Settle in. I can’t believe how long it is.

Thanks for staying tuned!

Blogman

Ain't Jazzercise great?

2006-01-20T10:56:00.000-08:00

Hello friends,
This past week, I've been feeling up and down both physically and emotionally. I can start out the day feeling good, then poop out half way through. It's frustrating when walking around a golf course tired me out!(I was able to attend The Bob Hope Classic on Wednesday morning with some great friends). Seeing the stars there was so fun, and the morning was so beautiful. Yesterday, all I did laundry and had to go to bed early - yikes!

I had every intention of attending my evening jazzercise class Thursday, but was too tired to. So, feelings of frustration have been very prevalent.

So, I decided that I would attend a morning jazzercise class, since that seems to be when I feel the best. Today was the day that I started! I have to tell you, if felt pretty good. I just love the music and, of course, the dancing. I wasn't able to finish the whole class, but was happy with how I did. My new plan is to build up my endurance in the morning classes, so I will be able to attend my own evening classes, eventually. So - my students - please don't feel I've abandoned you. I just have to work with when I feel the best right now. I will return to class, and when I do - watch out!

I have goals that I want to reach. I think I just have to stay open-minded and fluid about how to reach them. That is my prayer.

So, now I will go lay down for a while. I have an appointment with Dr. Luke later today.

Much love,
Karen

Feeling yucky!

2006-01-15T09:42:00.000-08:00

Hi.
As I said before, the first chemo treatment went really well on Thursday. On Friday afternoon, I received a shot, called neulasta, to help keep my white cells up. This shot has made me feel awful! I have amazing muscle aches, headache, and some nausea. I feel like I have the flu. Every muscle is sore - like I've had a very intense work out. So, I spent most of yesterday in bed. I have a feeling that today will be very similar. These side effects are common with this shot. This shot is necessary because it will prevent a drop in white cells, resulting in a high fever. I experienced this in the hospital and don't care to repeat it. So, the shot is necessary. However, it makes me feel like crap. I don't like feeling this way and it makes me crabby. I indulged in a pitty party for myself yesterday!!! It was fun, but I hopefully won't get stuck in it.

So, there's the latest. This is definitely no fun.

Love,
Karen

CHEMO I It is done.

2006-01-12T19:37:00.000-08:00

Thursday! Thursday! Thursday! It’s an intravenous rumble in the Playground of Presidents! It’s Meds in a Lazy Boy! It’s Karen surrounded by really old people! It’s Karen hooked up to bags again! Don’t miss it! It’s Chemo triage in Rancho Mirage!*

It’s Karen vs. 5FU in CHEMO I Celebrity Smackdown !!!!!!

Now available of Pay-per-View. Check your area for local listings-some programming and Karen’s freaky slippers may be disturbing and not suitable for younger viewers. Viewer discretion is advised.

So as you probably know, today was Chemo I day here in the valley. A few things were learned today about chemotherapy in today’s world.

First off, if we had not been sure of it before, we are now: Karen is young to have cancer. Now, if you are an older reader take this gently but . . . Holy Cow! The doctor’s office was full of people who were so very advanced and frail that I had to wonder how they survived the chemo. With the exception of a friend of Karen’s who happened to be there for chemo as well (that was a freaky coincidence) the next youngest had to be early 70’s. There were walkers and canes everywhere!

The room where she does the chemo is like a big ad for La-Z-Boy. They have nice big recliners around the room and everyone has their own pillows, blankets, and IV stands. Some people sit and stare, some nap through their chemo, and some talk.

Today’s fun topic was centered around a very puckered little lady of around 105 who was tucked with her hat, blanket, and blue jeans into a chair for chemo. Now, they had a heck of a time getting her stuck for her IV and it took a couple of nurses to get the stick right. Each time they would try, she would let out with a very wrenching “Oooooaaaaaammmmmmuuuuuhhhhhh.” Spiced with some “that hurts!” Apparently she has been doing chemo for nigh on 57 years because the nurses were telling her that at some point she really needed to get a port put in because her veins were just about solid scar tissue and almost un-pokable. This caused a nice little rave about how she was not going to do surgery because she could not stand the anesthesia. “I’m afraid I won’t wake up!” were her exact words.

Now . . . how bad could that be? “I just went to sleep and . . . “ what? Woke up dead? Woke up in Heaven? Woke up with Allah and 70 Virgins? I always wonder about people when I hear that because they sure sound way more afraid of death that of the pain and suffering that they are going through right now. As for me, may I be so blessed as to “wake up dead” some day, you know? How cool would it be to climb in your bed one night and the next morning be hanging with JC up in heaven going, “ dang! I didn’t get a chance to bring in the trash cans.” Sign me up for that plan, baby! Although I can’t know how my ride is going to end, I certainly hope for something peaceful like that instead of some horribly gruesome end . . . like getting run over by a Zamboni at a minor league hockey game, or being chewed to death by deranged cats or maybe wandering on to an active runway at a major international airport and getting hit by an empty airliner. That would stink.

But I digress. So after ms. Pucker spouts forth with this exciting revelation, it becomes the mission of life of all the women in that end of the room to 1)figure out how to convince her to get a port in her chest and 2) set her up with the appropriate surgeon to perform the task in an outpatient environment with a local anesthetic. The ladies chattered on about how great their ports were, how easy it made life, and how much there husbands loved it wherein one of the ladies threw forth with an, “isn’t that right, Howard?” Howard is a smart man after 74 years of marriage and replies from across the room with a very worn, “You bet it is.” while not looking up from his magazine. I am not sure that Howard heard the question or really cared but those four words seem to be an old friend that keeps him off of the blistering pavement, if you know what I am saying.

The chatter continued about the surgeons, the surgeons’ families, family histories, and how these particular items made them more qualified that others to insert this port in ms. Pucker.

Ms. Pucker, for her part, really wanted these ladies to Zip It and let her go back to sleep, so like a true customer stuck in a used car salesman’s office (and yes folks, I’ve seen this before believe it or not) she threw out the only defense she had, and that was the weak and rarely successful “objections of desperation” When faced with these objections, the average car salesmen makes something up and moves on. When the Chemo Crew were faced with ms. Pucker’s feeble ramblings, they put her down like a Thanksgiving Turkey at a Vegan convention.

MP “ I don’t like surgery! I just can’t handle the anesthesia!”
BAM!!!! “ Then get a local, dear! My Hank just had general anesthesia because he gets queasy.”

MP “ Oh . . . I don’t know any good surgeons.”
SMACK! “ Well, I use the young Dr. Schultz. Ladies?”
BIFF! “ Johnson!”
KAPOW! “Yang!”
ZOINKS! “ Old Schultz”
KER-SPLAT! “ Westheimer!” *

MP “ I don’t want to spend all day in surgery.”
SHAZZOOP!” Ten minutes! That’s all it takes!”

MP “ It does not sound like it is worth it.”
FABOINK! “ You’ll never regret it! Isn’t that right, Howard?”

“ You bet it is!”

When I left, ms. Pucker was standing at the front desk talking about a port with the staff. I think she just gave up and signed on the dotted line. She knows that if she shows up next time for her treatment and there is not a port on board her vessel, it may be on-site amateur port installation time, and that would not be pretty. Poor thing. Maybe we will see her at CHEMO II?

So there sits Karen, as out of place as one of those goofy songs on Sesame Street where one of these things is not like the other. Where one of these things just isn’t the same. You know the one. Sing it with me.

After a 1 ½ hour delay, she finally got underway and once started the process moved along nicely. In a preventative measure, they gave her an anti-nausea medication right up front along with some dextrose (sugar solution) and then came the bolus chemo. And surprise of surprises, there was no infernal machine around at all! They showed up with a syringe, hooked up to her IV and slammed that baby home in a very short time. Then it was game over and she went home. How about that, sport fans?

This afternoon when I got home she was napping, and did wake up with a bit of a headache. But overall, she looks like herself. Her hair did not fall out while she was at the doctor’s and she can still walk, talk, and eat.

I think that tomorrow will be telling as to how she feels, so we will let you know then. As we understand it each chemo will be more unpleasant as the body gets a little less tolerant of these chemicals and the latent drugs build in her system. The last few sessions could be ugly but then again, Karen plans to start Jazzercising again shortly and that means that her physical condition will improve even more, so again: Chemo, who’s your daddy?

Stay tuned!

Blog Man.

* I made the Dr. Westheimer thing up. Roll with it.

First Round of Chemo

2006-01-12T18:41:00.000-08:00

Hi Everyone,
Well, my first round of chemo, so far, has gone well. I didn't experience any side effects while I was there. It took about 3 hours after the infusion started to complete. This was faster than expected, so I was pleased. I had a nice visit from a friend who brought my the funniest slippers to wear. I wanted to put them on immediately, because they made me, and some of the other patients, smile!

Since I've been home, I have been pretty tired, have a headache and have experienced a little nausea. The nausea is usually taken care of with crackers, so I haven't felt the need to take medication - yet. My understanding of the chemo treatments is that with each treatment, the side effects can get worse. So, I'm happy that I have experienced very few.

Thank you for all of your prayers, emails and phone calls. The support really helps me, as you know by now!

That's it for now. Tom will be adding his special way of interpreting today's events. Stay tuned.

Love,
Karen

Karen's thoughts

2006-01-09T12:57:00.000-08:00

Hi.
I have a lot of thoughts running around in my head. I thought maybe it would be therapeutic to put them down here. I've been pretty disappointed with the turn of events surrounding my pathology report, after surgery, categorizing my cancer as a high grade. I suspected that the cancer was more aggressive, because the spread was quite extensive in just 9 months from the first surgery in February. But, the reality of it is hard to swallow. That's why I decided to go ahead with the chemo. If the pathology came back low or even intermediate grade, I probably wouldn't have done the chemo. I really want to delay any recurrence (if there is going to be one) as much as possible. I haven't discounted the power of prayer and God's will. We'll see. I can deal with whatever happens, but want to do as much, as is in my power, that I can.

Challenging thoughts: Fear of the chemo. I hope I don't scare my kids with any side effects. I hope I can teach Jazzercise during my chemo treatments. Bummed about the inconvenience of it all. Frustration with my lack of strength. I hope my weight stays the same. I hope I can finish all rounds of chemo.

Good thoughts: It's only been 8 weeks from surgery, and I have made good progress. I just have to take the time to realize it. I have amazing friends that will help me through anything. Whatever comes, I am strong enough to handle it, with God right with me. I have an awesome husband. I only have to get chemo every other week.

My parents are still here, but will leave soon. They will probably pack up their car next week. That'll give me more driving practice until they leave. I took the kids to school today. When I pulled into the parking lot at Hudson's preschool, he proclaimed, " You did it Mommy!" Warm feelings all around.

So, pray for me as I receive my first (out of 12) round of chemo this Thursday morning at 9:30. I would really appreciate it.

This experience certainly has shown me the power of prayer, faith, and friendship. Thanks everyone!

Love,
Karen

News from the Frontier!

2006-01-08T20:16:00.000-08:00

Hello faithful bloggers!

I know that it has been a long time since we had any new blog news but we have not had a lot of different things to say over the last few days, I am happy to report. I enjoy the blog and certainly feel a responsibility to keep all of you in the loop as much as possible but when there is no news I certainly don’t want to log on and babble about some other topic, as this forum is definitely not about me. If you do want to hear me ramble on about things on a daily basis, maybe I should set up a separate blog and go from there. The writing is certainly therapeutic for me and it is wonderful to talk to you all and know that you are up to date with what is happening – without needing to recount the entire endeavor from the beginning. Life is certainly funny at times as well as infuriating and from that standpoint there will always be something to talk about. I can’t help but think that Karen has felt like she is living in a bit of a fish bowl during the surgery for there are details out there now about her that few people will ever have known about themselves.

We do have a good amount of news over the past few days, so I guess that we will dive in and let the chips fall where they may.

On Friday we met with Dr. Luke, the oncologist, and discussed chemo. We had the same old discussions about whether to do the chemo now and hope that it does some good versus doing it later when the cancer decides to go partying and we informed him that our decision was to do it now. Interestingly enough, when we told him this he agreed with us and said that he had a feeling that it would go that way but wanted to keep the options open for us to decide. He is firm on one point, however: if at any time during this chemo Karen begins to lose weight, grows unstable, or seems to be suffering more than a reasonable amount (in his opinion) then he will step in a put a stop to it. But he cannot see any reason right now to put it off, and in fact we aren’t. Karen starts on Thursday of this week.

We have agreed on the FolFox course with the 5FU, but with a positive twist. Dr. Yoo had thought that we would do the 120 minute infusion with 46 hours of pump infusion every two weeks. Luke has researched this and has found that whether or not you do the chemo in one big dose (called a bolus, which is a single dose of drug usually injected into a blood vessel over a short period of time) or a slow-infusion pump, the results are the same be they good or bad. So this means that at this point Karen will go into the office for 4-5 hours every two weeks for an infusion through an IV in her arm and will NOT have to get a port in her chest and do an infusion plus pump. Bolus is good! That’s a word that has been with us from the beginning but has never been called into play. Remember the infernal machines back in Washington that would beep until beaten into submission? They had big, mysterious BOLUS buttons on them. And the TPN pump from Karen’s Steak-in-a-sack food mixture? Had a BOLUS button as well. Never got to use it. Gonna use one now.

Karen gets to pick her days to have the chemo, and Luke encourages her to adjust the schedule a day or two either way to fit her lifestyle, not the other way around. That’s cool, and we are putting that to use during this first course already as a friend is coming into town this weekend and thus chemotherapy would be particularly inconvenient on a particular day. So, move it. That’s very cool and makes the chemo much less ominous because we don’t have to kowtow to some schedule.

Yo Chemo . . . who’s your daddy?

Saturday afternoon Karen announced that she was going to drive the car. No fanfare, just walked out of the house with her purse and keys in her hand and headed for the car (AKA ‘Rocket’ per Hudson) With deliberate moves and looking much like a teenager on her first drive in the car alone, Karen adjusted all of the seats, the mirrors, familiarized herself with the controls, and settled in. She started the engine, backed out of the driveway, and disappeared into the sunny afternoon. She was gone for over 30 minutes on her little drive, and when she got back she declared that all was pretty good. Unlike the last surgery where pushing on the brake pedal caused some strained feelings and a certain loss of power in her foot, this time there is plenty of power for that but it is a bit uncomfortable to manage the steering wheel in a certain position for long, and stretches here a great deal to crane her neck right or left. But she feels safe and in control of Rocket. It will be nice for her to have her independence back again and I believe that she has given Grandma a Sleep In Late pass for tomorrow so that she can take the boys to school herself. Then it will be nap time.

Saturday night, while Bumpa and some card buddies took all of my and Sean’s money at the poker table, Karen and Grandma went down to Kristin’s house and watched a chick flick. They did not return until 11:00PM, way past the recent bed times. Although Sean lost his money before then he did not want to go home a break up their girl thang, so he hung out with the rest of us for quite a while. What a sport.

Tonight we erased all of November and December on the War Board and replaced it with January and February. I am very pleased to note that nowhere on the board are their such ominous notes as “Surgery Day” or “ Tom leaves for DC”, “ Tom returns from DC” or “ Tom and Karen hopefully come home”. Nay! The biggest events right now are “Trip to Legoland for Tuck’s B-Day”, “Baseball tryouts”, and “ Gone to Vegas to see the RickyMartin”. Joy.

So, with the closing of this chapter we are left with some burning questions:

HOW will the chemo affect Karen?
WILL it really suck or be not-so-bad?
WHEN will she be Jazzercising again?
WHAT will 2006 bring for adventures?

Stay tuned! Same Bat Channel!

Blogman

2006-01-03T13:29:00.000-08:00

You all are wondering where I have been , aren’t you? I have been home in the desert and enjoying it. The week between Christmas and New Years was nice and easy, and every day Karen made little strides towards normalcy. At least if you call the next six months normal, that is.

She still tries to sleep a lot, and there is a fine line between sleeping enough and sleeping so much that she can’t sleep at night. The good news is that this is really nothing new, and she does what she has to to sleep or watch TV or the like. Her big thing since getting home is the leg twitches. Have you ever had those? It’s like when your eyelid twitches for no good reason, I guess, only this keeps her up at night. Karen’s solution is to sit on the edge of the bed and pound those muscles into submission. Literally. At times I will wake up to a 5.0 earthquake as the bed does a nice little jig to the thump of a leg muscle getting the smackdown treatment.

For New Years our buddies Barbie and Bob came to us from Colorado and brought their hot air balloons and a great menu of cooking. In yet another Bradford Circle first, we set up and flew the balloons right off of the Cul de Sac on Friday and Saturday. It was great fun and a strange feeling to be standing in front of a house with a crown line (from the top of the balloon) in my hand instead of a field of grass. But it worked great and on Friday Sean (LB) flew along with Tucker and neighbors Chris and Nick. That flight went down to south of Coachella where we tethered the balloon for Hudson and Dessa (Chris’ youngest) who are not quite big enough for a free flight yet. I think that friends and neighbors thought me a bit off my nut when I informed them that we were going to fly a balloon right off our street. But I say to them, “Verily we have done so – twice!” The second morning flight was really pretty and we had a much larger crowd to see us off. A coup this day was Karen’s mom Joyce went flying with Barbie and me across the valley and landed near Cathedral City. (which is a good, fair piece!) We have some great shots and it was good to handle a balloon and fly again. Alas, fair Karen opted not to go because she lacks still many of the muscles that one needs for landings, etc. but she did chase with us on Friday. Barbie brought here a chair with a little umbrella attached to keep the sun off of her, and she sat in her throne while we stuffed the balloon back into the trailer. It’s great fun, and every time we fly now I harken back to and miss the old days of ballooning.

But that first day of flight about wiped her out, and by the afternoon she was woozy and nauseated again. Good news is that she went to bed and bounced right back after a little rest. Her stamina is improving!

We are going to see Dr. Luke this Friday to talk about Chemo. As of right now we have discussed it at length and are pretty sure that the chemo is a go. We’ve come this far, after all. Let’s get it done with.

Thanks for your cards and calls! Karen should start driving this weekend and that will help her attitude tremendously. It is nice to not have to ask her mom to take her places. Remember what fun that was?

Christmas was good!

2005-12-26T20:49:00.000-08:00

Well, a Merry Christmas to everyone! You may have noticed that I have not written for a few days, and I will tell you why:

For the past four days – excepting some light conversation about chemo vs. no chemo – we have been a normal family. Cancer was absent from our family life for a few days and we were normal again. We had good nights’ sleeps, ate a lot (Karen too) and played with toys like crazy. It was so normal that it did not even occur to me to blog about what is happening because hey, who needs a blog when you have nothing to talk about, right?

Right.

Our Christmas was the best ever. The boys did not get video games or bicycles, but rather a flotilla of Playmobil toys, which is what they really wanted. For those of you who are not familiar with Playmobil, they are little sets of detailed ships, vehicles, and action adventurers that come complete with tiny accessories like hats, scarves, cups, guns, gold coins, buckets, telescopes, maps, and the like. They really are impressive and the boys now are the proud commandants of four pirate ships with rigging, two large castles and even an airport with a pair of jets. In addition, there are an army of little troops from pirates to revolutionary war soldiers, to knights and kings, and even a glow in the dark skeleton or two. Each one requires careful assembly, and as a result I spent the entire day putting together castles and ships, and Karen and Joyce did some time as well on the airport. What a time! I enjoyed it.

Karen ate and slept just fine, and the only thing that was a bit off was the fact that she had some passing gas pains. She went to the Christmas Eve service at church with all of us, and walked up and down the street a couple of times. Overall, she did very well. At this point she does not seem to miss the hormones at all, and the cramps from last week are a distant memory. I think that her plan for the time being is to leave it alone until she feels a need. As I recall, the docs in DC did mention that she might not need them much because she is in such good shape. We’ll see about that.

Our only real discussion right now is about doing chemo, as I have mentioned before. It is certainly tempting to just not do it right now and use the excuse that we have no way to measure the results as a reason. But that being said, we have pursued everything so far with as aggressive a path as we could find in an effort to avoid having someday to say, “ gee, we shoulda tried that . . .” I have no patience for Shoulda-Woulda-Couldas and this one would be the ultimate gamble if we decided not to continue with the advised program now. It would be a shame and a waste (in my opinion) if we went through all of the surgery and pain and then did not follow their recommendation for chemo right away. I think that we are in agreement on this, and we have to let Dr. Luke know in the next week or two what we want to do.

Again, I hold 49% voting stock in this deal, and Karen has 51%, but I think that we are going to be on the same page here. Stay tuned!

Now that Christmas is past, I look forward with great enthusiasm to New Years. We are going to have a womping big and great New Year's Eve party here on Bradford Circle, and I am enjoying the planning of it. Once again, we are going to use our beloved Cul de Sac as the party place but instead of cold drinks and a movie we are going to have a climbing wall jumpy, several wood fire rings burning, a nice movie on the big screen, and great food and fellowship all night long. It’s also Sean Roberts’ and Brian Tucker’s birthdays this week, and these are two guys who deserve a party! If any of you have been to a Bradford Party, you know we do it up right as a big family, and this will be no exception. And hey, if you are in the area and would like to stop by, please do! Bring your own main dish to eat and a dessert to share along with your favorite beverage, and voila! Our party can only hold about 400 people, so the more the merrier. Bring chairs. Email me if you have questions. (tpendleton@dc.rr.com )

So, have a great ‘tweener week and we’ll talk soon!
Blog Man

Good News!

2005-12-23T15:02:00.000-08:00

Hello Friends,
I just wanted to wish everyone a Merry Christmas and Happy Hannukah. I have to agree with Tom, that though the cancer could have overshadowed a lot of 2005, I also end the year feeling very blessed and grateful. Many of our family and friends came to our aid and helped out so much, that our hearts remain full. As I continue to heal and gain strength, I look forward to paying it all forward. God will show me a way.

More good news - my PICC line was removed today!! I am surprised at how excited I am about this. It was the last remaining tube/reminder of my hospital stay. I feel so free without it.

I talked with my oncologist today and a decision whether to do systemic chemotherapy must be made soon - within a couple of weeks. Tom and I will prayerfully consider all the plus' and minuses. But, I won't think about it until after Christmas!

Love,
Karen

A note from Kathryn

2005-12-22T10:28:00.000-08:00

I know you haven't heard from me in awhile. I have finished all of my english handbell performances and the day after the last performance (12/16) I had laposcopic surgery to remove my appendix as a "precautionary" move since that is where Karen's cancer began. I am happy to report that the pathology report came back normal with slight indications of endometriosis. I have no symptoms of that disease, so we will deal with that when I have to. I am recovering well. My family and I wish you all a very happy holiday season. Many thanks to those of you who felt compelled to email Karen's family and our family wishing us many good prayers and thoughts.
Kathryn Rudd

Wednesday

2005-12-21T13:40:00.000-08:00

Hi Everyone!
I just want to let you all know that I am feeling better. My cramps are subsiding and I am able to eat a little more. Unfortunately, I lost some weight (not eating for 4 days will do that), so am working on gaining it back. You know what that means!! Chocolate shakes, cookies, ice cream and candy! Thanks for the prayers. Once again, they worked.

I'm starting to get out a little. Last night, I surprised my Jazzercise class with a visit. It was sooooo great to see them and I can't wait to join them again. Today I went to the bank and to buy my kids some new tennis shoes. So, hopefully you'll see me out and about more. I can't drive yet. I have 2 more weeks to wait. So my parents and husband chauffeur me around.

If you want to email me, you can now use karenpendleton@hotmail.com. Don't use the comcast address anymore. Thank you.

I know that this entry isn't as funny as Tom's, but there's no way I can compete!! If you haven't read Tuesday's entry from the blog man (Tom), keep scrolling down and enjoy. I read it last night and got a good ab work out (which isn't hard for me, since my abs are so weak anyway)!!

With much love,
Karen

Tuesday - On track!

2005-12-20T12:08:00.000-08:00

This is going to be quite a Christmas. I mean, from my perspective, things are just fine. The biggest present is of course that Karen is here. “Oh”, you say, “ isn’t that sweet?” Yup. When we take a look at how close things came to not being this way, it’s a Merry Christmas indeed. I am a lousy Christian in that even when God shows me the good stuff, takes care of this or that, and makes a path for me to travel, I still end up doubting and having to focus on re-establishing that faith. So many times in my life things have happened and solutions have come about through no power of my own, and often through channels that I have nothing to do with.

Let’s take a look at this year’s big present. Many of you know this story, but many don’t. I offer it to you as a testament that there is a Big Guy upstairs who is watching. I will present it in a list of facts, much like one of those list books:

When I left Palm Spring Motors I set up our own company which allowed us to get a PPO instead of an HMO. The PPO had just taken effect when Karen went to the doctor for her stomach pain.

At our Doctor, an HMO gets you a physicians assistant and a PPO gets you a doctor if you want one. Dr. Becker was suspicious of the kind of pain she had and ordered a CT scan in addition to prescribing antibiotics.

The pain was gone in 24 hours after the antibiotics kicked in. Had Dr. Becker not taken the steps, the cancer issue would have been left untreated until who knows when?

When Dr. Griswold had Karen on the table and saw the field of cancer in her belly, she and Dr. Schultz did not take matters into their own hands, which would have made things worse. They buttoned up and moved forward. That may have given Karen lots of years.

Does that sound like chance? I think not! So, if for nothing else than being thankful for ‘luck’ if that fits your mind better, what a great year!

And there are other presents as well. I got to spend time with BroMark which would not have happened except for this. The Guys have had lots of time with Bumpa and Grandma which would not have happened in this amount or intensity had it not been for all of this. We have a trainload of warm fuzzies from our friends who have come together and created miracles for us this year, and they aren’t done yet. Wow.

Over the weekend it was mentioned to me that it was nice to see that my spirits were so high this year, what with all that has been going on. I had not stopped to look at it from the outside but after taking a 3rd party inventory, I guess it does look pretty crappy. When I list them, it is not too pretty: Two Grandparents passing away, issues with my mom, worry about dad, and then this cancer thing. Yuck. Poor guy. Glad I’m not him.

But I am him. I don’t feel like I should look, I guess. There has just been so much good this year that it outweighs the bad and as we launch into 2006 (which can’t help but be a better year) I am as optimistic as ever.

What a Christmas babble, no?

You all read about the hormone thing with Karen, and how she pulled the patch off on Saturday. I am so please to report that she has been feeling better by the day and last night she seemed almost normal. Keep in mind that on Thursday, the last night I spent with her, she was moaning all night, we had the TPN bag hooked up, and she was up and down throughout the night with pain.

Last night I was greeted by a different woman who was standing in the kitchen making popcorn when I walked in the house. She was walking, laughing, and completely free of the pain wrinkles on her face that have been with us so much lately. Last night she went to sleep next to me with no TPN and with nice deep breathes and not a moan all night. It was as normal as life has been in 6 weeks, and that’s pretty good. She has lost some weight in the last few days but that does not concern me so much because until the last day she has hardly eaten anything at all and is not drinking as much as she should – but she knows all of this and is trying to ramp up right away.

Today Nurse Bill comes for his weekly visit to change the dressings on her PICC line, although we are not using it right now. We still flush is once a day and put new Heparin in the line to prevent blockage, just in case we need it.

Her incision looks pretty good, now that it has been released from the bonds of suturage. The top of it is a little red and is not as pretty as the rest so she keeps Neosporin on it and we move forward.

The guys are on break now and are eager for Christmas to come. So are we, actually. It’s going to be a fun one.

The trip home for Gram’s memorial service was nice, and it is cold there. I am now really unprepared for that kind of cold so I showed up with a very weak hodgepodge of clothes and coats. Spent some great time with Neil, Aileen, Andrea, Paul, Bob, Ginny, Mom, Dad, Theemy, Bob (Steg), JB Holden, Mike Steg, and the list goes on.

Great plane story before I go – on the way out from Palm Springs to Chicago I asked for and got at the last minute a window seat in an emergency row – I dig those for the leg room. I parked myself in 21A and sat back. There are only two seats on that side of the aisle in an MD super 80 airplane, and behind me in 22 A and B were an older couple. She sat behind me in A and Pops was in B. Now Pops was a big guy, at least as big as me and he wore one of those back braces that supposedly help your hernia, sciatica, or some other ailment and hardly fit in the seat at all and I felt for him. You know, ‘ been there, done that’ kind of thing. Whenever he wanted to move positions he would grasp the seat next to me and give a mighty heave, thereby flexing the entire frame system for both 21A and B shocking me either awake or to action, and causing me to check to make sure that I had the proper earthquake supplies in place. But overall a nice guy, and friendly. Somewhere over Denver, however, it happened.

Dragon breath.

I have been privy to some bad breath in my 40 years. I have smelled breath that reminded me of sewers, dog pee, onions, rotting apples, and some others that I don’t care to mention in this forum. But Pops had the worst breath I had ever witnessed. I think it was a result of poorly cleaned dentures because they did not seem to stay in his mouth very well and in between breaths he would suck on them and click them around in his mouth. People, I have seen some stuff and experienced some smells. I can do vomit, gore, blood, childbirth, feces, pus, landfills and the like but this man’s breath brought me to my figurative knees. It took me from calm and quiet to almost literally gagging with one hand considering reaching for the never-before-used-by-me barf bag. I do not say this lightly! Those of you who have spent time with me know that I can tolerate just about anything, but this breath was off the hook.

Naturally, being a big man, he spent a lot of time leaning forward in his seat to be comfortable on the four hour flight and that put his mouth no more than 18 inches from me no matter where I sat. There was no escape! Faster, me mighty steed! Faster! Mach .81 (according to the pilot) was not enough! ***Santa, for Christmas I want an afterburner for this airplane to get us on the ground fast. Please. Love, Tommy. PS, I've been good. ***

I put my coat over my head and filtered the air with the insulating layer. No good.

I hid under a blanket AND my coat. Still no joy.

I begged the pilot to turn off the No Smoking sign and have the entire cabin light up. The lights stayed on.

I tripled up on my Altoid mints in an effort to thwart the stench and surround myself with helpful vapors. Only short term success, and I was risking permanent taste bud damage to my tongue if I kept up the mintage rate I was doing.

Finally, I employed the fresh air vents for both 21A and B in a two fold approach. Since he was in B, I used my B vent to blow a flow of air back towards him in a force field move. Then secondarily I used the A vent to blow down across my face, giving me the direct fresh air that I needed to block out the cabin air that Pops was using up. It worked as long as I sat perfectly still in the air flow. My neck cramped, my butt hurt, my left arm was frozen to the wall of the plane, and my eyes were dry – but it was worth it. The breath was awful. I prayed that somehow Captain Underpants would appear in the aisle and woosh by at that moment to take the foul stench with him in his wake. Did not happen.

Then – Respite! Over Iowa, Mrs. Pops offered him a mint. (‘Offer him the whole package!’ Screamed my mind) Thus, with the dentures confined to the mouth and the lips closed while the stench devoured the helpless mints, we finished Iowa and Illinois without barf.

Whew.

Monday, I checked in my bags at Toledo and the gate dude arranged for me to have my good old 21A back for the trip from Chicago to Palm Springs. Groovy. I sat and read Memoirs of a Geisha and looked forward to a pollution-free run to Palm Springs. As we boarded the plane for Palm Springs, I walk down the aisle and as people take their seats and the view clears, who is sitting in 22A and B? Its Mr. and Mrs. Pops!

“Hey,” he says, “ Werent you on this flight on Friday?”
I tried not to look disappointed, or break into tears. “Heyyyyyy . . . . .how are you?” Weak, but genuine in my inquiry.
“ Well, “ says Pops, “ You didn’t cause too much trouble on the way out, so I guess it’s OK to sit there again!” He chortled.
“ I’m so glad you’re not sick!”, chimed in Mrs. Pops, “because it turns out I had the flu and I was so worried that all of my coughing on you Friday had made you sick. I thought I was contagious” Frankly, I hadn’t noticed.

So there I sat, with this big stupid smile on my face, hand on my box of Altoids and trying not to laugh out loud. What were the chances? But the trip home had a better ending because although the chair still shook alarmingly and Mrs. Pops coughed a lot, apparently the grandkids or the Moose convention had worn him out because he slept the whole way – with his mouth shut. I am done flying for a little while.

So have a mint if you need one and count your blessings this Christmas!

I am.

Blog-Man.

Saturday, Dec. 17th

2005-12-17T10:59:00.000-08:00

Hi Everyone!
It's Saturday and the boys are at their last soccer games of the year. Unfortunately, I don't feel well enough to attend. I'm still experiencing stomach cramps and they're driving me absolutely crazy. My Mom has a theory. I have been using some estrogen patches to deal with the menopause that I'm going through. One of the side effects (we learned from reading the literature this morning) is abdominal cramping. So, I decided to take the patch off and see if it helps. I would rather feel grumpy than crampy!! I hope that is all it is, and I can get back to eating again! I feel as though I've taken ten steps backward and am feeling very frustrated. You have all been so supportive, I can't thank you enough.
I have only been on a few outings - mostly doctor's appointments. I got my stitches removed Tuesday - YEAH! I went to my oncologist yesterday, and they gave me a shot (procrit) because I'm still a little anemic. The most fun outing was when I went to Tucker's class yesterday to view the gingerbread village that he and his friends worked all week on. The village was really amazing and some of it came home with us. It tired me out and I came home and immediately took a nap.
Tom is in BG to attend his grandmother's memorial service. I believe she lived to be 96 years old. We feel fortunate that we were able to visit her last August before she passed. The boys miss him and so do I. Please pray for safe traveling for him and his family. He'll be home Monday night.
In addition to that prayer request, I would like to add that I would like for you to pray for my cramping to stop. Once that happens, I think I can make more progress again. Also, pray for my parents who are doing such a great job of taking care of me and the boys. It isn't easy and they have managed with great grace and love.
Don't be afraid to call. Hopefully this cramping will stop and I'll be up to more visitors and more outings!!

With lots of love,
Karen

Thursday the 15th. Retro day

2005-12-15T14:28:00.000-08:00

( Sing to Chestnuts roasting on an open fire)

Gas globs gurgling in the dead of night,
Karen’s pain jacking up her day
Tiny grunts, with her eyes full of pain
It’s really hard to sleep tonight.

We know that poos are on their way
They're bringing lots of strength and healing the next day
And every gurgling sound that we may hear
Means a functional intestine tract is near.

And so I’m offering this simple blog,
For addicts from one to 92
And though it’s been said many times, many ways
Won’t you please pray . . . for poo.

Thank you . . thank you verra much.

Bloggers, it has not been a good day and I write this little Christmas ditty to keep up the good spirits. On Tuesday Karen had her most active day yet and that included a nice little lunch and a quite respectable dinner. Unfortunately, it looks now like she is still paying for it. She was miserable all yesterday and all last night with stomach pains, and as a result, back pains from being tensed up all day, and the like. Last night was miserable too, as she was always trying to be comfortable and not succeeding. Lots of moans there.

But the dock workers are still producing, and aside from all the ruckus going on in the warehouse, things are OK, albeit uncomfortable. But to be safe, Karen went and saw the doc today who prescribed something to calm the stomach down and promote sleep. I pray that tonight will be better.

Overall, I would say that the last 36 hours have been the worst since we have been home. When I talked to Karen today she sounded completely whipped and very much like the exhausted person who laid in the hospital bed a month ago. A big change from the chipper girl of 72 hours ago. A bummer.

So, we are starting again with the really bland food, clear liquids, and the like. Square one, if you will.

I’m going to Ohio tomorrow where it is sunny and warm. Lousy time to leave, but we’ll get through that!

Blog-man.

Tuesday - Dock Workers Strike is ending!

2005-12-13T11:35:00.000-08:00

It’s Tuesday now, and things are actually ramping up!

First off, I must comment on Karen’s overall better mood. Since going to the doc last week, she has started her hormone therapy, also know as ‘happy patches’, and they seem to be kicking in and making her overall mood better. She takes a joke better, has more energy, and seems to weather the little bumps in the day much more easily than last week. Of course, it’s possible that it is more a matter of having another week of healing under her belt, but either way I don’t really care.

This morning, Aileen drove her to get her sutures out of the monster incision. Karen said that things went really well and that there was a small area that looked like it wanted to open up a bit but the doc showed no concern over it. She is now cleared to take a bath! I expect that she will be soaking in the big tub tonight, luxuriating in one of her favorite pastimes for the first time in a long time. So we have the first of the two big medical events behind us for this week. The second, of course, is to lose the TPN at night, and that will happen on Thursday.

News from the docks! Great news from yesterday is that the dock workers shipped two boatloads of product! Management was thrilled to learn about it, and the best news was that no further union negotiations were necessary; the workers did their job and the product went out! That’s as good as news as any for this week, and we hope that the shipping department continues to adhere to its contract, thereby allowing the receiving department to crank up again.

This morning, after suture removal, Aileen took Karen to Starbucks for a sit and grocery run, and then Karen stopped by my office to say hey and show Aileen the digs. She looks great and is now ready for her nap to be sure.

Life is good!

Monday the 12th - Docks are Open

2005-12-12T15:13:00.000-08:00

Sorry that I have not blogged for a few days here . . . now that we are home things do not happen as fast or with as much severity as that did there for a while, and that is a good thing. The last week has really been settling into a pattern and getting used to having Karen home. It’s not like she is difficult to have around – quite the opposite! She takes long naps and perches on the couch during the day, and is usually in bed by 9 or so. That’s a day for her, and each day the awake time gets a little longer.

She is more mobile every day and is taking her own showers without a shower seat. I think that one of her biggest peeves is her case of LGS (leftover goo syndrome) Over the weeks in WHC she had so many things stuck to her with tape that now the little goo residue patches do not want to leave. She has tried all kinds of solvent, and even sand blasting, but to no avail. The only way to get this stuff off is just to pick at it and try to roll it up into little rubber balls for disposal. It’s a regular source of humor and comment to talk about the tape.

If you have not seen her, Karen looks great. Her hair is getting quite long and I think she looks beautiful that way, although I am also sure that when she is well enough she will get it cut. Bummer. She is quicker to smile every day and has actually asked for some things which I can deliver on like more ice cream and Molasses Cookies, a batch of which I and my Mighty Kitchen Aid mixer will mix tonight. Good stuff.

Tomorrow, Tuesday, she is going to have the sutures in her super-incision removed and then she can let that heal a bit and finally take A BATH! That will be great for her as it will sooth her aching back and body more than a hot shower. She is making a huge effort to wean herself off of the Percoset and is moving to OTC stuff like Aleve and Tylenol as quickly as she comfortably can. Sometimes they just don’t cut it, though, and she has to back them up with the strong stuff. It’s an ongoing experiment and the results do not always stay the same from day to day.

We visited Dr. Luke, her Oncologist, on Friday and talked about Chemo. He was duly impressed by her incision and still a bit wary of the whole Sugarbaker process. However, as always he is tremendously supportive regarding the cancer and talked to us about the upcoming Chemo. He is of the mind to perhaps wait on it for a bit, with his reasoning being that if we jump right in and do it now as Dr. Yoo has recommended it will be more of a proactive, preventative measure. Sounds good, right? Ahh, but there is more. The downside to jumping right in is that we don’t know where the baseline is so if we do Chemo soon we will not be able to look back after a few months and see if we have made any improvements. It’s like leaving on a plane flight at night with no directions. When you land you know you made the trip, but you don’t know how far you’ve come or where you are when you land, because you don’t know where you started. Luke’s thought is that we let Karen heal completely and watch the CEA cancer markers. If and when we see a spark on that scale, then we go with the chemo. Of course by then the cancer will have progressed farther, right? Right. But since we don’t know if doing chemo right now will do anything other than make her uncomfortable for 6 months, do we want to give up that quality of life? Is the tradeoff worth it? Well? Is it? Huh? (If you have the right answer to this question, please submit it in writing. We don’t)
One thing that Luke is very sure of is the exit of the TPN. The TPN holds up the dock workers and prevents her from developing an appetite because her body has everything it needs without having to do anything. The only part of the body that does not appreciate the TPN apparently is the liver, which is used to helping create food for the bloodstream, not receive it as a premade TV dinner. The liver sends little liver hate mails through the blood stream which cause some strange readings, but nothing to worry about. Pesky liver.

His bigger concern is the PICC line, and its potential for infection. We agree. So after Karen finishes off her latest run of TPN on Thursday, we are going to remove the tube and let her eating stand on its own. She is making the plan that the reduced Percoset plus no TPN and more eating by mouth will indeed get the shipping department up and running, and as a result provide more opportunity for the receiving department to bring in some regular food. We just have to watch her weight. Right now, she is at about 130 which is above her pre-surgery weight. It’s the TPN. After we take that away and she has to eat on her own we will watch that every week.

Sunday Karen had her first outing to Church to see Tucker in his stage debut as an orphan in the Christmas Production. Now, I may be a little (a lot) prejudiced ( a whole, whole lot) here but he has to be just about the cutest orphan on the face of the earth. I could not stand it! I was so proud that he was up on the stage and having the time of his life. I went back stage and adopted him on the spot. He did a fantastic job with the children’s ensemble who had their act 100% together. It’s nice to know that when the old man can’t be involved that I now have a protégé that will step up! And I don’t doubt a second one in the wings as well.

But that outing wiped her out. Last night she was overtired and could not sleep. How frustrating. So tonight its warm cookies and some milk and early to bed.

Joyce and Al are down in San Diego on Coronado island enjoying some much deserved R & R. Sister in law Aileen is in from Chicago for the week, and has already spoiled the guys with Playmobil and a new pedal car for Hudson. Shoot, Christmas is already over! They are thrilled, and did I mention spoiled???? It’s great to have her and she seems to like our weather. Can’t see why. 20 and snow or 70 and sun. Hmmm.

Hey, enough already! Blog at you later.

Tom

Thursday

2005-12-08T11:13:00.000-08:00

Happy Thursday to you all! I am very pleased to report that last night was one of the best nights that we have had. Karen is very tired of the TPN bag weighing her down in the evening, and is very driven to get it over with but for now it is still there. Last night I went to our small group Christmas Party (Thanks, Eric!) and had a wonderful time. It would have been great to have Karen there with us, but she just does not have the batteries yet to handle such an outing. I got home at about 11:0 and she was drowsy but awake. I slid into bed and soon afterwards the three of us were asleep.

About one o’clock I was awakened by a buzz saw that had planted itself in my room. Karen was snoring like I have never heard before, and she was out. I did not even feel her get up for bathroom runs but rather did not sense any movement until about three when it was time for meds. After that she was soon snoring away again. When I asked her how she slept, she said that she had had a pretty good night. That’s encouraging to say the least and the fact that she was sleeping so deeply was fine news.

This afternoon at about noon I hit a wall, and am now exhausted. I think it must be the past month of frantic activity and now that I ‘m home and things are in hand, my bod just says “time for a nap.” Wow. My brain hurts!

Have a great day, y’all!

Wednesday Morning

2005-12-07T07:53:00.000-08:00

Hello Faithful Bloggers!

The last 36 hours have been merely OK. While Karen gets stronger and stronger by the hour it seems sometimes, there are those days when it seems that progress becomes a bit flat.

The nights are still rather incomplete and with the TPN going in all night, regular trips to the bathroom are at least every couple of hours. Then throw in a wake up beep for meds every four hours, and at least one session of gas bubbles and walking per night, and you have a pretty chopped up sleeping experience for those in room 1A. (That's us.)

She has completely lost her shuffle, and now walks very nicely as well as handling the steps without any issues. Exercise is the key to movement from the underleg department, and to that end (no pun there) she is doing the miles.

She's feeling a bit down, though, and I think that it because now that she is dropped back squarely into life around the house, she is for right now a spectator, on her own schedule and not really interacting with life around her and that is causing a bit of depression. It's important for us as caregivers to remember that. The common attitude that I find myself having is to assume that she is just so thrilled to be home (which she really is) that she does not mind sitting and napping and reading while the rest of us run around doing our things. But the real matter seems to be that whereas she is normally the one doing the running, it is hard to sit by and watch others do it. We think that she is glad to be resting while life goes on, but she is feeling like she is not healing fast enough to keep up with the pace. Does that make sense?

Last night was especially trying. As mentioned, after these many days with some occasional solid food meals we still have had no action on the shipping dock. Trying is not the issue, and all protocals have been followed but the dock workers are not producing as they should. This caused much angst in the head office, and it becomes a pain. Last night the gas bubbles and belly pain were pretty intense so Karen finally called in the Liquid Negotiation Team to address the Dock Workers. (Follow me here.) After about 30 minutes of intense negotiation, they were able to come to an agreement and some product was shipped via China Bowl Express.

Savvy?

This gave some relief and she was asleep quickly.

The nurse, Bill, visited yesterday afternoon to draw her blood, change the dressings on her PICC line, and do a general check up. Based on her blood work the next batch of TPN will be prepared and delivered by the end of the week.

I know that many of you have been hesitant to call and chat with her, but now I ask you to stop with the hesitation. Her stamina is tremendous and she would love to speak with you. She does not drowse in and out anymore so pick up the phone! She wants to feel in touch, and you all are who she wants to be in touch with!

OK, then.

I'm off to be useful at work. They have been so gracious and supportive. I hope they remember who I am.

Later!

Tom

Monday the 5th.

2005-12-05T08:45:00.000-08:00

Monday December 5, 2005

Things are starting to settle into a pattern here, and while many patterns and activities are new some are definitely old ones coming back to visit.

For example, last night, while hooking up the TPN machine, Joyce thought that there were too many bubbles in the air line going into the PICC. Small bubbles are just fine, contrary to what I learned from John and Roy back in the 70’s on EMERGENCY. They don’t instantly make your heart stop and kill you and it is not necessary to administer 700cc of lactated ringers and call Rampart to talk to Dixie for further instructions.

No. You simply let the little buggers run their course. Well, as Karen gets more and more on her game daily she is watching more details. Last night, as we set up the TPN she watched the entire process until I had started the programmed infusion and then declared that there were too many bubbles. Instead of quoting the above mentioned TV show, I began a logical process of stopping the pump and in the process used some buttons that she had not seen me use before.

“What are you doing?” she asked.
“I am stopping the program so I can re-purge the line to get the bubbles out, like you want.” I replied in a reasonable tone of voice.
“ Why are you pushing so many buttons?”
“ To stop the program to purge the line.” Roy never had to explain himself. And it’s not like there was a manual really handy to look this up and then verify through three independent sources. There was TPN dripping on the couch, for the love of Pete.
“ How do you know what you are doing?”
“ It makes logical sense. Stop the program, get back to the prime screen, and then reset.” I was getting miffed at her lack of confidence.
“ Why are you pushing the arrow button?!? You don’t know what you are doing! Stop ACTING like you know what you’re doing!”

Now it was on. Karen is back: Get the job done and now, but do it so it makes sense to ME.

“ I Do know what I am doing and if you will have the least bit of faith in poor, unmechanical me, I will fix this in a minute.” Said I with gritted teeth and a firm glare.

She rolled her eyes and was quiet. I am always astounded when she makes an issue out of the smallest thing on a machine! When I swap out a water heater or rebuild an RV, I get a smile and a “that’s nice, honey.” But when I am asked to stop and restart a tiny little pump I get the Denial Of Skills. She has no idea how angry that makes me, but I doubt it is going to change. I am The Fixer, for cripes sake.

Aside from the annoying spouse routine, yesterday was again a big stride in strength and pain reduction. She walked three times up and down the block, and last night we walked for ½ hour or so and it was a breeze! The shuffle is all but gone, replaced by small steps as we walk along.

We added to the routine a nice kitchen timer that counts down 4 hour increments and one of those little pill boxes so that in the middle of the night she gets a beep and then takes the next pills. Easy. That keeps the meds in line.

But the evil gas bubbles were back last night, and she was up and walking around the bedroom and through the bathroom in the middle of the night trying to break those things free. Two nights ago her pacing sounded like “ssssssssh.ssssssssssh ssssssssssh.ssssssssssh.” at a slow pace. Now it is a pretty quick walk without any shuffling at all. There were two episodes last night of gas bubbles but I think that it may be a good thing because she is eating more food and that should be producing more gas, right?

This morning when she got out of bed, she virtually hopped right up and walked out of the room. With her Dr. Suess socks and purple slippers she is a vision of comfort and fashion as she almost breezes around the house.

Her body seems to be finding a pattern as well. Yesterday afternoon, after a busy morning, she took a 3 ½ hour nap that was really good for her. Then she spent the evening with the family watching The Wizard of Oz downstairs. She only really wants to be in the bedroom for sleeping and otherwise is downstairs. That’s a good thing.

I am planning to be back in the saddle on Wednesday at work, and am looking forward to that. Sister in law Aileen Pendleton is arriving Friday night for a week, and next weekend is Tucker T’s debut in the Southwest Christmas Program. Then Bumpa and Grandma are leaving for a few days of R & R down San Diego way.

Things do roll on, don’t they?

Tom

Sunday the 4th - Trying to settle in

2005-12-04T10:55:00.000-08:00

One thinks that coming home would be somwhat of a respite from the crazy life that we lived at Washington Hospital. On the contrary, having touched down on Friday afternoon things have only ramped up to a now frenzied level as we rush to adjust to life with the patient home.

Strangely enough, the boys don't seem to subscribe to the notion that there should be a bit of rest time now for the travelers. It is important for mommy to see and hear everything that has been going on for the past 3 weeks so why not show it to her all at once? Trains, books, projects, cars, homework, craft projects - all of these demand immediate exposition and acknowledgment before heading off to soccer games, etc. So Karen has had a whirlwind of things to see since arriving.

The night time ritual is very interesting, and I am the lucky guy who gets to play with the nifty machine. Before we touched down, a local company dropped off to the house 7 big bags of TPN, seven vials of multivitamin stuff to be shot into the TPN, a pump, a backpack, loads of 10ml saline filled syringes, 5ml Heparin syringes, alcohol wipes, tape, batteries, needles and tape. All of this equipment is used to hook up the night time feeding for Karen to keep her health and weight up until she is eating normally.

The TPN is still fed through the PICC line in her arm, which is the front end of the tube that actually runs all the way up her arm and across into a large vein just below her throat. the idea here is that TPN is pretty hard on the skin and smaller veins and need to be introduced into a large vein for prompt delivery, so everything is hooked up and delivered via sterile fittings.

We start by removing a bag of TPN from the fridge (and starting tonight we will warm it up a bit as I understand that there is nothing like a new liquid delivered into your bloodstream at 40 degrees to bring a chill to your bones) and we run a new set of tubing and filter from the bag of TPN, through the metering pump, and into Karen's arm at the PICC line. Next we mix the multi vitamin and use a needle and a syringe to inject the vitamins into the bag. There is a sequence of flushing the PICC line, priming the new line and filter, and then activating the pump to deliver the entire contents of the bag (the better part of two quarts) in a precise twelve hour period. Once everything is set and humming, the pump and the bag fit neatly into a smart backpack for easy carrying and transport. Nighttime makes the most sense for this delivery as the only carrying of the bag that needs to be done is from the bed to the bathroom and back several times a night.

Karen's two sleeps home have been pretty good. Last night she was up quite a bit and had a bout with the old gas pain demons for a while, but overall it went well. Although at the time it was scary for her, she could not remember if she had taken her Percoset pain meds at 3AM and instead of risking overdosing she waited until 7AM to take the next dose. She survived it and pretty well.

Our bed is quite the sight. Karen is right center with a mountain of two pillows and two pig pillows below her. The TPN pump (about the size of a large backpack) lays in the middle of the bed and clicks and hums all night. This is covered by another large pillow. There are also mounded along the centerline of the bed another 2 or three pillows just in case, and then on the remaining portion of the bed is me. I can't see Karen when laying down without sitting part way up and craning my neck, but I know that if the TPN is a-clicking next to me under the pillow, she is still in bed. If not, i have concern.

In the morning, when the TPN has all been delivered, the pump makes a little beep every fifteen minutes until I unhook everything and send Karen unattached into the world.

Her mood is good but she is establishing her level of energy which is better than expected but still very low. She is up to taking phone calls but they most likely wont be long ones so be not surprised in the middle of a conversation if she announces that she has to go and get some rest. It seems to happen that way. Certainly a change from her marathon-level phone talking skills of norm.

Last night the boys and I went and got a tree and put it up, and this morning they helped put up all the ornaments. Very busy.

I have to run to the store this morning and get one of those pill-box things like my Grandma used to use, and some extra trash cans. I believe that a while back I mentioned the amount of waste generated by the healthcare industry. Yow.

Have a great day!

Tom

Home at Last! Phase 1 is complete.

2005-12-03T12:56:00.000-08:00

Saturday December 3, 2005

Hey everyone! We have arrived and in great fashion.

We left DC on Friday morning at OH dark thirty, with Bob and Ginny driving us out to Baltimore, and Bob Jacobs showing up to help us move gear down to the lobby. The trip was uneventful to the airport, and I was pleased that Karen showed no signs of distress at road bumps, direction changes, etc.

Once at the curb, our bags were whisked away for check in and the wheelchair arrived. Allow me to recommend traveling with a wheelchair whenever possible, as she was rushed past the waiting throngs of people, past the checkpoints, through barriers that were opened for access to her ( and to me, her loyal packhorse) and within 10 minutes of our arrival, and that may be a bit on the high side, we were standing in a very sparsely populated concourse with two hours until flight time. A quick run out to gate D16 and we were actually sitting in front of the gate. We were the only ones, of course. It was a bit early.

I was concerned that the two hour wait might burn up some valuable resources so first thing was to strike out in search of some breakfast offerings. Karen asked for a bagel and cream cheese, so I set out to find such a thing. Unbelievably, even amongst the coffee shops and bars trying to make a few breakfast bucks, there were not any to be found, so I settled for a collection of muffins and a water for her. The blueberry muffin got a wrinkled nose and ‘I don’t like blueberry’, but the coffee cake was a hit and she nibbled. Enlightened after 16 years to the fact that she does not like blueberry muffins (?????) we put away most of the goodies, and then Karen decided that she needed a walk. So, using her wheelchair as a walker she ventured off to walk. Said she would do it by herself. Away she went, and after about 5 minutes I looked and she was a good 25 feet away. I turned back to my book and after another chapter or so I looked up and she was a good 30 feet away. This was easy. Like a slow-motion toddler who does not go very far and needs no direct supervision. Over the next 30 minutes she traveled about 150 feet and back, and then sat back down. What a walk! She was doing great, and then announced that is was time to pee.

Now, this had been a concern because right up until we left there was usually some kind of assistance for the pees. I had seen no 'family' restrooms and was sure that the other traveling ladies would not welcome my foray into the restroom in a supporting role. The good news was that she had no attachments now, and right off she offered to go pee by herself. We had the time, so I said, “Okay, then.” And off she went.

Then came the chairjacking. The rickety chair she started with was really wide and beat up but it worked just fine. She went to the restroom, parked the chair outside the stall and then when she came out, she was approached by an airport guy who asked if she was using the chair. He must have been blind as well as stupid and She said that yes, she was using it. He asked if he could trade a small chair that he had for the big one that she had as apparently a sumo wrestler or someone needed to catch a commuter to Boston. So the trade was made and she came back to me with this different chair. What an idiot! “do you need this chair?” ‘No, I like to hobble like this to bring attention to myself.’ No tip for you, goofball.

We got on the plane and settled into our seats. Kudos to BroMike for setting us up in first class. Tremendous. Karen was quite comfy and they brought her yogurt, water, juice, and a fruit plate so she nibbled and slept all the way to Denver.

Coming up the jetway in Denver (as you have all seen by now) I noticed a familiar profile standing far off in the concourse that looked amazingly like BroMike Rudd. Sho nuff, it was Mike! What a treat. He talked his way onto the concourse to say hi after driving all the way down from Fort Collins. It was cool to see him and he promptly escorted Karen to the potty while I grabbed an overpriced and tastless deli sandwich. He also brought a new pink pig pillow, a duplicate of the one originally given to Karen by the Rudds for her trip. The pig is filled with tiny beads and can be used for a head, a prop pillow, or a cough pillow as needed. Karen had made mention that pig #1 was a little worn and suffered through sweat, hospital fluids, etc. So Mike pulled from a bag a new pig. Karen was pleased. Then, in about as long as it has taken you to read this paragraph, it seems, it was time to board the flight for Orange County so we hugged Mike goodbye and assumed the same seats on a different plane for home. Thankfully, both flights on this day were on time.

I had had concern about gas pains and back pain that had plagued Karen right up to the night before we left. In fact, we were up from 2AM to 3AM walking the halls trying to work out some gas bubbles. Then we napped until 4AM when the nurse woke us up to remove the TPN (food) bag and start with the discharge process. I was worried that the gas pains would crop up and we would either need to walk ( unstable as it would be) up and down the aisle) or she would be in pain the entire trip. Turns out that the pain was not a big issue at all and the only gas pains that I was aware of occurred west of Kansas City until about the Colorado line. That was it. What a blessing.

Touch down at Orange County was easy and by the time we had wheeled Karen down to the baggage claim, Steve Blair materialized and commandeered Karen from the wheelchair guy ( who promptly faded away) and scooted her out to the curb to the awaiting Duchess of Kent. The Duchess is Steve and Chirstines fabulous motor coach, who sat at the curb in all of her splendor taking up about 6 parking spaces. (Steve and I both strongly subscribe to the theory that there is nothing wrong with employing a 30,000lb machine to move a 125lb woman.) Karen was quite the celebrity as she was walked into her private bus. I waited for the luggage with Steve until the parking police began to have issues with the bus at the curb, and then he went to deal with that. After I had the luggage I went and stood at the curb with the other people waiting for their rides. It was very funny and I felt again quite star because as I stood with other people craning their necks for their pick ups, Steve guided the Duchess up to the curb to pick me up. First off, in mixing with four lanes of taxi cabs and mini vans the Duchess stood out like a giant amongst minnows as the traffic inched towards me and you could see her from the second she entered the long tunnel. Then, with a mighty blast of wind and a silent glide, Steve bumped over two subcompacts and slid to the curb. In so doing, he also pulled up in front of 26 other waiting people to my left and about 6 to my right. Where moments before there was an open view of traffic and of the world, in a few seconds they were 2 feet from the shining chrome and gold mass of the Duchess, who came to a stop with a mighty blast of air brakes and diesel sounds. Then the door glided open and I was swallowed. Another blast from the brakes, a rumble of diesel, and the curbites were left to wonder either (1. Who that was or (2. How Pete Rose had gotten so tall and gained so much weight.

On Board the Duchess was Christine with Baby Olivia ,and Karen was put on the couch in the living room and seated comfortably while Steve played rush hour limbo with traffic. We motored home in the lap of luxury, and for the last half Karen stretched out in the bedroom, pillows under her knees, and dozed to the rumble of a diesel at work. Could there be a better sleeping environment??? I think not.

As we arrived at Bradford Circle the boy were playing out front as Steve backed the Duchess up in front of the driveway. After gawking at this sight, Hudson was the first to see me through the windshield and he started jumping up and down. After I opened the door and hugged them they ran up the steps into the Duchess and saw mommy. A very happy reunion indeed! The guys had to learn where not to hug mommy but they got that down pretty well.

Soon after we moved Karen inside and got settled, the home nurse showed up. Karen will continue to be on the TPN for nutrients until her appetite comes back so every night we will hook her up to a nice portable pump and a bag of TPN. It’s a nice setup, and all fits into a backpack if she wants to be mobile. She will keep this until she can eat 2/3rd of everything offered her at meals.

Karen was glad to be back in her own bed. I, as husband and night nurse, get to sleep on my side of the bed with the pump and bag of TPN between us. Since her PICC line is in her left arm and she sleeps on the right side of the bed, the pump sleeps in the middle, covered in pillows to keep its busy whining and bumping sounds to a minimum. I thought it would be a problem but didn’t even notice. Since all meds are now oral, we are up every couple of hours to visit the potty and take meds as needed so the night is actually a series of 2 hour naps, but good naps. No hospital paging going on.

This morning, Karen got up and had a busy morning around the house, taking a walk up and down the street, and as I write this is napping. I think that she is going to make huge strides in the next few days and the back pain and gas pains are already significantly reduced.

It’s good to have her home.

A bit of clarification: She is not quarantined, or on a restricted diet, or limited to who she can see. There is no fear of any kind of abnormal germs, sick people, or anything like that. Once she has rested a bit she will be able to walk, talk, and socialize as normal, within rest periods. That’s her big issue now is that she tires very fast. Call her on the phone and see how she is if you want to stop by. That’s perfect! Just know that it will probably not be a long visit! Thanks to all for giving her this day or so to get her bearings.

She is thrilled to be home without a doubt. I think that just getting out of the hospital, which is not a very healthy place, will help her tremendously.

Now that I am the sole blogger, I will keep up with the blogging and take it all the way through her recovery at home and then chemo. We are not even close to being done with this, but we have finished phase 1.

Thanks for your support and interest!

Tom

Denver Surprise!

2005-12-02T11:41:00.000-08:00

Since Karen and Tom were scheduled for about an hour layover in Denver on their way home today, I drove down to the airport and managed to talk United into giving me a gate pass to go down to see them (very nice United lady that I thanked profusely. They are allowed to do this, but discouraged from it).

I had sent Tom an email that I might be able to do this, but he hadn;t read it yet. So, they were both stunned that I was at the gate waiting for them. Remember when we all use to be able to do that?

So, I had a nice 40 minute visit with Karen and got to take her on walk to the bathroom. I was also able to deliver the new pig pillow, as the last one was worn out in DC. Karen looked great and sounded good too. Flight from DC to Denver went well and she seemed excited about getting home to see the boys.

For one last finale, I snapped this picture of the two of them in the airport just before they boarded the flight to Orange County.

Thursday the 1st of December - SHOWTIME

2005-12-01T07:37:00.000-08:00

Let's cut to the chase. We are coming home tomorrow, on our scheduled flight. Could not have worked out better. This morning Gary and the team wandered in, looked things over, and said that it was time to get thee out. So we are going to do all of the discharge stuff, prescriptions, and the like today for an early exit tomorrow.

The hospital here is calling ahead to set up a visiting nurse to come and do the TPN and monitor her vitals once home. That will be set up to start tomorrow evening. We asked the questions about restrictions like food, walking steps, etc. and there are none. Nor are there any restrictions for her as far as quarantining her from the general public. That's not an issue for her.

The two main issues are still the lower back pain and the occasional nausea. As long as she sticks to a schedule with Percodan for pain, she seems all right.

So now I am trying to pack the hotel room into the suitcases that it arrived in, and of course that does not work. But I will make it fit and then schlep it over to the hospital room so that all we have to do in the morning is pick up and shuffle.

The airline is aware of the need of a wheelchair for all flights and connections, so I think that we will now be some of the people who need ' a little extra time' to get on board. Ha!

I think that the trip will wear her out in a big way, and I would not expect her to be talkative or very social until Sunday or so but we will see.

So for now, that is it! A big IT, granted, but an it nonetheless.

Discovered why all of a sudden Kathryn could not get wireless in the lounge. The computers that were the wireless access point are gone and they have framed in a new office there. I imagine she tried and tried and did not put that together but when I walked out of the elevator into a wall that was not there last week . . . well . . that pretty much explained it. Mystery solved.

I'm off to pack and check out of the hotel. It's going to be an interesting day.

Talk soon@!

Tom

Wednesday Night Late

2005-12-01T07:35:00.000-08:00

November 30! Happy birthday, mom!

Here I am. 2 hours late on a flight out of Chicago, crammed in to a seat that is made for a person half my size. I’m on a nice little McJet, on my way to Baltimore. We were delayed this afternoon for two hours because the front tires needed replacing, and apparently AAA was backed up or something. I think that the actual changing only took an hour or so, but the remaining time was the paperwork and the runaround as we got signed off to leave. I think it is hilarious, and I suppose crucial at some point, because if this plane augers in to a cornfield in Tennessee, how will people know who to sue for my wrongful death if we don’t have a signed log book that shows who changed the tires? It does make me sad, though, and a bit more understanding of the reason that the airlines are in such trouble. I reckon it took about seven guys standing around looking at this airplane to get those tires changed. It was not tough, and in fact looked like it was more simple than changing the tires on the family Oldsmobuick. (Spell check hates that word). As I witnessed it, it went like this, after jacking up the nose gear:

Step one: Remove large cotter pin from hole.
Two: using large, custom made wrench, remove nut. (first discuss if it is lefty-loosey, or righty-loosey, depending on which side the wheel is on.)
Three: Using lateral force, remove entire wheel/bearing unit.
Four: Gaze at now naked, unladen axle for 25 minutes. Talk about sister’s new punk boyfriend.
Five: Send five guys in two trucks across the field to the hangar to get new wheel/bearing unit.
Six: Stop for coffee at snack shack. Re-address punk boyfriend issue.
Seven: Mosey to full, waiting aircraft and again regard still unladen axle.
Eight: Find smallest hole in center of new wheel/bearing assembly and carefully fit it onto axle. (This should take three guys NO LESS than four tries.)
Nine: Break time. Punk boyfriend ain’t so bad. Maybe Sister ain’t so good.
Ten: Re thread big nut and use wrench to snug it up. ( See step two to avoid saving time.)
Eleven: Realize that no one remembered a new pin. Send three guys back to hangar to get pin part number 19448372888399939948777387487-B. Not A! B! And get some coffee.
Twelve: After pin arrives, discuss proper reinstallation, then force pin in any way it will fit.
Thirteen: Using big boy letters, and staying within the lines, fill out the part of the log book that says ‘tire’ and ‘who dunnit’.
Fourteen: send log book back to hanger in order to cause delay of plane even further
Fifteen: Ooops. Forgot to take book back to plane. Play four hands of Hearts to decide who is going to drive back across the airport and return the log book.
Sixteen: Have coffee.
Seventeen: Call it a day.

Finally, I have arrived at the hospital. Bob and Ginny were there extra early for my arrival, and were the perfect chauffeurs all the way in. They brought me up to date on what they had seen and experienced with Karen since I left.

When we finally gained 2NW, my first sight was the backside of Karen tooling down the hallway with her stand in her hand, doing some laps. There was only the one bag, the TPN, still connected to her, and she was actually walking instead of shuffling like when I left her. As I walked up, Ann saw me and the jig was up! It was great to see her, and she really looks good. Her hair is clean, her eyes are bright, and except for the very slow speed at which she moves, she looks like herself.

But, alas, the evening went downhill. Soon after I arrived was the time when all of the meds were due, and they brought her a new cocktail of stool softeners and muscle relaxants for her back. Taking these at once did not sit well in her stomach, so the nausea came back. Then it was time for the heparin shot which is still as painful as it ever was. And the pain meds seemed to take a bit longer than usual to kick in so before long the back pain was really bothering her. We watched the Jazzercise video ( which she loved by the way) and started Benny and Joon, but soon it was the same way as I had left her. Very uncomfortable with the back pain and some nausea. I was amazed. Was it my very presence? Krikey!

Now it is 12:30 and she is still awake, and we have done the turning, removal of heating pad, and massage of lower back. It does not look like she is close to sleeping yet, I’m afraid. How things can change quickly.

The word on the street is that she will leave and come home with the TPN bag for food, but only use it at night. This means that we will set up an IV machine at home, and have a nurse come in and check on her regularly. Having been here for a few hours now, there are some items that I will need to install once I get home that I had not considered. First off, she walks to the potty but I don’t want her to have to turn on the big lights at home, so I may run a little night light path to the bathroom or maybe even some low voltage rope lights along the floor to guide her.

One big thing that I forgot was a chair! What was I thinking??? She spends a lot of her time sitting in a chair by the bed. I am going to have to remedy that, by gum – and it was not even something that I had considered. Big goof there.

It looks like right now she is drifting off to sleep, finally. Let’s hope. Time to smother the couch!

Stay tuned tomorrow as things may get interesting. As we still fight with the back pain there is a rumble that she may be released in the next couple of days. I have been planning to stay in the hotel for a couple of days to bring up the post-partum comfort level but after talking about it with Karen tonight, she is of the mind that when she is let out we should just go and get there. Okay, says me, its her call but it does make some sense now that we have to set up and work with the TPN. It also means that she will not be in as good shape as I hoped for the trip home, and from how her stamina seems to be (or not, actually) it is going to be a challenge.

But we knew that going in, didn’t we? Ann has had things well in hand here and I find myself again re-learning the nurturing details of tending.

Now it gets interesting.

wednesday evening

2005-11-30T14:16:00.000-08:00

Karen has had a much better day today. Yesterday she had a lot of back pain and nausea. She slept well last night due to better pain management and the nurses getting to her faster with the drugs! We have found that she does best with the pain pills at the same time as the zofran and those coming exactly 4 hours apart. She is so much happier when she's not in pain (imagine that!)

She is very excited that Tom is coming tonight! Yesterday we washed her hair, today she got all washed up. Her energy is great and she walked around the track a record 4 times at one time today. She was planning to go firther but realized she wanted to save her energy for her bath! Last night she set a personal record for speed around the track. She was really moving! This morning one of the ladies at the desk said that we looked exactly alike! I said "You should see her twin!" I think it was the bed head and sleepy eyes that they noticed!

The doctor's have decided to send her home with the TPN, the food bag. They plan on having her use it at night. This will let her eat at her own pace and not be too stressed about food.

We were lying in wait this morning for the rounds and didn't let them get the best of us! We got to ask a few questions and that resulted in some muscle relaxants for her back. We're hoping they help.

She enjoys your letters, we can't seem to open your photos but appreciate all of the thoughts.

Captain Underwear seems to be training at off times, I have seen him once, and heard him another time. We don't know what his health issues are but are hoping that he is well soon too! Too friends that we've met are checking out tomorrow. I bet Karen will be following them soon!

Tuesday afternoon

2005-11-29T13:29:00.000-08:00

Tuesday afternoon

Karen is sleeping as I write this, looking pretty peaceful in her bed. She had a rough morning with pain and nausea. She us having a lot of lower back pain due to being in bed and sedentary for so many hours. She has had the lower back pain on and off but the pain pump and the other pain meds kept in check. Now that she is just getting her pills every four hours she has a bit more pain. Few of the nurses just bring it to her on schedule they usually wait for her to ask and during the night she sleeps through a request time and then she wakes up in pain. She is also trying to take it after eating a bite of something because it also can make her nauseated. She waited just a bit too long this a.m. and was really miserable. By 10:30 we had her back up ad running, pain meds, nausea meds, a small bite of food and she was ready to head to the track. We heard Captain Underwear just once today and don’t know if he is still here or not. Maybe he was scared off by her training sessions. She made it around the track 3 times in two training sessions today. She had a warm up lap while the pain was intense and decided she needed to wait and try later.

The doctors are not surprised by her lower back complaint and said it was pretty common. They alternate between telling her that she should listen to her body about eating and then discussing how they can get her to eat. It’s a bit confusing to know how important this really is to them. The whole doctors on rounds thing is such a joke. They appear at her bedside in the early morning just when she’s sleeping soundly, turn on a bright light over her head and ask her questions. It seems like a torture scene and I believe that our country is having arguments about torture techniques at this time. (since I’m in the city I’m thinking about calling John McCain) She has no time to formulate a thought or question based on the little information they provide, let alone the time to articulate it before they say goodbye. I have run after them a time or two (glad I am sleeping in sweats) to ask questions that we wrote down ahead of time. I would like to propose a two minute warning on those visits, if they came in and said “the doctors are coming the doctors are coming” at least we’d be able to adjust to the lights! If there are doctors out there reading this I don’t mean to offend you but a little courtesy seems to be in order.

We had her sit in the shower today with her back to the hand held sprayer. She tipped her head back and we washed her hair. She looks great! Clean hair really cheers her up. She can’t shower yet due to the tubes and all of the sutures but she can get pretty clean. She also blew it dry by herself.

Thanks for the prayers for her back and her appetite, she ate a little vegetable soup and a few bites of pudding for lunch. I was really encouraged that the soup tasted good to her. They have her on an appetite stimulant that tastes horrible to her. She drank it in one gulp and we were pleased that she didn’t gag. They really don’t want her to vomit and are always cautioning her about what to do if it actually happens. We are really happy to report that she hasn’t had that occur.

Dr. Yoo, her medical oncologist came in last night and launched into a rather interesting dialog about animals that don’t have gall bladders. It seems that elephants (who don’t have gall bladders) live longer than animals who do. I think this was in response to Karen’s question about digestion now that she doesn’t have one! He also said that she should avoid greasy food for a while and that her body will adjust! She wants to take him home to CA with her and I can see why. He asks about her and really cares.

Tom gets here tomorrow night and I know she is excited. When I read the date on the calendar she said “It’s Toms birthday” HAPPY BIRTHDAY TOM! Welcome to the over 40 club, it’s about time you catch up with the rest of us! We’re thinking about you.

Returning to the Front!

2005-11-29T13:15:00.000-08:00

All right all right all right all right! I have had a great time being home with the boys, Joyce and Al, and everyone in the 'hood but now it is time for the big mission. The mother of all retrievals. Perhaps one of the longest ( and I know that Frankfurt, Germany is the topper in my book) distances traveled for a date. The ultimate line for the old party question, "...so where is Karen tonight?" " Why, I think I left her in our Nation's Capital!".

Ayup, it's time to go and git 'er. Back to the ranch, ya'll. (or all y'all)

Tomorrow morning I am wheels up at 7:48, stuffed into coach for a trip back to DC. If I am lucky, they will entrust me with the lives of the passengers and allow me to sit in the emergency rows, but I think that my name may still be blacklisted from that last incident where I attempted to practice removing the hatch before flight. Certainly, I mused, I must pe prepared for that rapid but bumpy landing from 40,000 feet that will leave the hatch in good enough shape to actually remove and chuck, yes? Apprently not. My 4 yard hatch chuck onto the wing and subsequent union baggage handler cost us 6 hours of maintenance delay plus a lovely debriefing with the Homeland Security party staff. Dude, I'm just doing my part for national security. Anyway, I will not practice. I will not practice . . . .

Talked to Karen this morning and she is sounding more and more like herself. This is evidenced by her explanation to me that the reason she is having heartburn and nausea is that the medication needs food in the system to reduce said nausea and that she is not eating more than 10 bites per day. Taking an especially passive tone I replied that, " gee, it sounds like you have the answer right there, huh? Need to eat more food and let that acid and stuff get soaked up."

" Tom, I KNOW THAT!" came the oh-so-prompt reply. "It's not like I don't want to eat. I need to talk to the doctors and find out what can be done about the nausea and heartburn."

"Um, I think - and correct me if I am wrong - that you said that more food in your belly will set things right . . . .right?"

" Yes, but I have no appetite! I don't feel like eating. If I could just get rid of the nausea and the heartburn things would be great." (Unsaid retort: "never stopped me!")

" All right then . . . .wanna talk to your mom?"

So as I return to DC with the mission to bring her home the first step is going to be to get her to eat, which she apparently is not yet keen to do. I will persevere, however, and because of that we may come home divorced. Grounds: " Your honor, I must cite culinary cruelty as the cause of this dissolution. He would simply not stop trying to feed me. Every minute he want's me to eat. Cakes! Shakes! Juice! IceCream! All the time with the food food food! He's an animal! He can't let it go! I can't live with him another min- NO TOM! I do not want a fritter!"

Not pretty. But, I have a job to do and I am up to the task. Feed the mrs, and fetch her home directly.

Stay tuned. . . . it may not be pretty.

El Bloggo.

(Tom)

P.S. Pie? Schnitzengruben? (just warming up)

Last night

2005-11-29T06:47:00.000-08:00

Karen had back pain last night and had trouble sleeping. Her back spasms are from prolonged sitting and bed rest. Please pray for relief from back pain and increased appetite.

Monday evening!

2005-11-28T13:41:00.000-08:00

I confirm (happily) that the previous blogs contain accurate information! All that remains on Karen's torso is a small white bandage, lots of sticky tape residue and quite a few sutures! She is thrilled by her new walking ability and walked two laps this afternoon around the race track! she had been confined to the speedway but is now doing full circles on the track getting ready for the Indy or a race with Captain Underpants! He has recently been moved to a room closer to ours and I think it's a ploy to psych her out, it's not working! she's ready to train seriously now.

The telemetry was removed earlier and that was great but the JP grenades are the best to go! We are now in the Stamina training phase of recovery and the spnge baths from the nurses are over and we were left to our own devices with a wash cloth and towels. No shower yet but she smelled pretty clean by the time we were finished! The whole process of drain removal, walking and bathing was exhausting and she slept a bit before undertaking the track!

We were told by this evenings nurse that she will be removing the pain pump tonight. As I tucked Karen in before I came to blog she gave it a fond pump and said "I'm gonna miss you buddy!" I think she will but she has used it less and less over the day. She is getting her pain med at the same time as the anti-nausea medicine and that has really helped her today. Her spirits have been good since she hasn't felt so nauseous.

Our biggest goal now is to find something to eat. she ate a few bites of soup and a bit of apple pie today for lunch. Nurse Mindy told her she couldn't get her pain meds without food as that adds to her nausea.
I am really encouraged by her attitude and she was talking about what to wear on the plane and how to get out of bed at home... all signs that she's more ready.

She enjoys listening to your notes and loved the photo album that she received today from Snapfish (Mike?) We both had fun looking at it! It included Kepke family vacation pics from the last 4 or more years, very cool! Thanks for your thoughts!

We'll keep you posted on things! I imagine she'll be tube free completely very soon! Your prayers are really helping and we appreciate them!

Say Goodbye to JP

2005-11-28T07:26:00.000-08:00

Today Karen’s JP tubes were removed! Her telemetry is also gone. This will make walking easier as she no longer has to tape the tubes down. Now that she is unencumbered her lap times will decrease; the floor lap record may fall. Watch out Captain Underwear! Her remaining PICC line administers medication and food. Today she’ll get an appetite stimulant. Please continue to pray for relief from nausea and for her appetite to return.

This Just In! Karen is Tube-Free! (but not PICCless)

2005-11-28T07:23:00.000-08:00

This is a breaking news Blog . . . Washington (GN) We just got off of the phone with the patient herself who reports that this morning some mysterious men in white, armed with sterile surgical kits, forced their way into her room and demanded ...... Three JP Drains. Not just one. Not Four, but three. three was the number, and the number was three. They then used the Holy Scalpel to remove the sutures and whisked the drains out. Was there pain? Yea, verily there was. Was there much rejoicing? Yea, rejoicing was abundant.

Karen sounds happy, almost giddy about this and has planned her day to pursue Captain Underwear with a vengeance. Her main tasks now consist of eating more and more, walking, and sitting. It has now been mentioned that she may be parolled this weekend and I was quite pleased to note that there was not a hint of terror or serious trepidation in her voice. So now it is down to pain control and food. She is mobile!!!!!

I know that Ann will be posting a more accurate Blog account but I wanted to post my excitement at the news . . .hot off the press!!!

sunday evening

2005-11-27T15:16:00.000-08:00

Sorry blog readers! As a previous blog addict I know how late this posting is...I checked all the time before my arrival here! I couldn't get here sooner as Karen has been very awake all day and she likes company most of the time. She and I agreed that I needed to head over to blog though as it has been an eventful day.

Early this morning Karen's bowels started working, this happened right around the Doctor's rounds and the nurse was so impressed that the big event finally happened that she felt the need to show him!! Karen and I were a bit surprised by that but I guess there are steps in a patient's life that everyone cares about!

Karen had a breakfast of oatmeal and the doctor had told her that to go home she needs to eat 2/3 of her tray that they bring her so she did! Fortunately there was only oatmeal on the tray at that meal! She has not accomplished that feat with any other meal and I don't see it happening as the smell of most things put her off right away. She is able to eat anything she'd like to try that is soft so Uncle Bob and Ginny brough over pudding, jello, noodles and butter, all things that sound edible to her.
She had nausea almost all day and didn't feel well until late this afternoon after her second walk. She felt so much better after that walk that she took another and made it farther than ever! Yeah! She's training to beat this man who runs the halls pushing his IV. He books up and down the hall with this look of glee as he passes. I have named him Captain Underwear as he wears his outer gown as a cape and it sort of flies out behind him as he goes, hence the underwear sighting. I think he's a superhero in disguise!

The lasso (oxygen tube) has been out for a day and today they removed one of the JP tubes. It hurt a lot as it was sort of embedded in the skin and the Dr. had to do a bit of cutting. Karen was tough! He said they'd probably be removing the others soon! Thanks for the prayers and keep them coming! She still gets the killer heparin shots and has to wear the "Leg Irons" the cuffs around her legs to prevent blod clots. The velcro is wearing out and occasionally they pop off as they expand.

She is sleeping better and her biggest problem right now is the nausea. Please pray for that to pass. She gets a bit stressed when they talk about going home and she said she's worried about nausea on the flight and just the length. I am sure that she'll get more comfortable with the idea when Tom is here.

I know she is missing everyone and looking forward to her reunion with her boys.

Saturday afternoon

2005-11-26T12:49:00.000-08:00

Karen has had a very sleepy day! she said goobye to Kathryn early in the morning, drowsed over a small bit of oatmeal and slept for 2 and 1/2 hours. After her sleep we walked up and down the hall and up and down the hall again! She made it to the nurses station and back once and to the first doors the second time! She has snoozed a lot since with a short time awake over a bite of mashed potatoes and a few peaches. We watched an episode of "What not to wear" and I decided to shoot secret footage of her in her hospital gown for future use! What with the non slip hospital socks it will make some great footage on TLC!
There has been no change in medication today and she had the last of her antibiotics this morning. They are keeping her on the food IV and will talk about a change on Monday. they are encouraging her to eat anything soft she might want to try. My job is to scope out the cafeteria for something that might appeal to her that is edible! She mentioned ice cream but isn't yet sure. The nurse today reminded her that she will just have to try things and some will work and some won't at all. Pray for her a few foods that she might like to come along, so far only oatmeal.
She gets irritated because she wakes up having to go to the bathroom all of the time. she hates to have her sleep wrecked! It's good that her kidneys are functioning so well.
Keep praying for her strength, she's working hard at being more independent! Please pray for my hands! My excema is not liking the dry hospital and all of the hand washing! It seems a silly request what with all Karen is going through but I'd still covet your prayers.

email for Karen

2005-11-25T15:41:00.000-08:00

With Kathryn heading home you may send email to Karen at love4karen@comcast.net
ann will be picking up email at this address for her.

Here's my last blog entry from Washington DC titled "not a perfect angel but close!"

On my last day with Karen I have so many mixed emotions. I, like Tom, want to stay and see the progress. I want to be home and sleep in my bed. I want to stay here and get Karen through any potential tough times in the oncoming days. I want to see Mike and the kids and my dog. I want to stay with Ann and help her out.

I sound like an angel on the web, so I thought I would tell what I was not good at while I was here.
-my ice chips delivery was less than desired (especially at night). I always got the right amount, but I frequently missed her mouth and had to search for “stray chips” amongst the tubes and blankets and gowns. I improved. Unfortunately when I missed and the chip landed smack dab in the middle of “the girls” we had one of our giggle fits – Karen started laughing first!!
- I have knocked off two inhaler exercise (air bongs) machines off of their perches. The first one broke, the second one the mouth piece hit the floor and I was grossed out by that and she was still under neutropenic precautions.
- The lasso incident has already been reported
- I talk for Karen too much. I have improved in that area – really!
- I have trouble moving the side arms of the bed. I swear they are against me!
- I can’t turn off the pulse/ox machine very well. I have no idea why.

Well all of these are very small details that Karen gets a kick out of. I am very confident that Ann will do well in my place. She will get Karen going and be a great encourager and cheerleader. She is used to coaching, and teaching. These traits will serve Karen well. Karen is nervous that Ann is here...

Keep Karen' s spirit up. Let her know what is happening in your lives. Thanks for your notes.

Kathryn

Friday night 11/25

2005-11-25T15:10:00.000-08:00

Karen Update:

Last night was a good night. After a midnight blood draw and ½ of ½ a dose of benedryl she was asleep until morning with periodic wakefulness that did not last long. A lot of coughing last night – all good. Pain was managed well. Not very much gas or lower back pain. Ann said she got more sleep than she does at home. I don’t know if I believe her or not!
Fever reached 101, but Tylenol did the trick.

Karen is beginning to have hot flashes again. I guess this will be something that will be with her for a long while. Darn, but at least it doesn’t involve pain.

After visiting with Dr. and all here is the scoop.
New pain management is:
Percocet is her new baseline pain medication. It is in oral form. This is something she can go home with. Her extra pain med is the button push of Dillodin. She will receiver her first percocet at lunch. The goal is to wean her off of Dillodin.

Bone marrow is responding very well to treatment. They will stop the antibiotics slowly – two at a time. Two today and then two tomorrow.
A stool softner has been ordered. Should receive it at lunch time.

Dr Yoo stopped by again. We really like him! He explained what happen on Tuesday with the fever and all. Karen’s white blood cells were climbing through the weekend and on Monday as expected. They stopped the neuprogen as was protocol on Tuesday morning. It turns out that Dr Yoo thinks that during the surgery with all of the aggressive scraping of the peritoneal lining, and during the 4 days of chemotherapy that the chemo went into her blood stream. This is expected to some degree, but not to the degree Karen experienced it.
Her reaction to this was a typical reaction that chemotherapy patients have with intravenous chemo (what she will get when she is strong enough). When you have regular chemo therapy your white blood cell count goes down within 10-14 days after chemo. It is individual as to how much they go down, and the oncologists usually monitors it to see if you need neuprogen as a boost. After 3 weeks your body then starts developing the white blood cells on their own. Well, they didn’t expect Karen to have that reaction, but she did. Her white blood cells plummeted fast resulting in a fever. Now Dr. Yoo suggested STRONGLY that her local oncologist needs to be informed of this reaction and is prepared for it for her first Chemotherapy treatment. Most likely this will happen again at her first chemo. There is a type of “prevention” for this. She will need a shot of Neualasta. It is neuprogen that lasts for 3 weeks – just in time for her body to start producing the white cells themselves.

Karen got her hair washed at the room sink with the help of her nurse Thelma and Ann. We are avoiding the bathroom at all costs! It took a ½ hour for the sink water to get really warm. They did a nice job and Karen tolerated it well. She looks great! Dressings got changed today. Ann got a look at her chest tube sites. Not bad looking!
Lunch has just arrived as well as the new pain meds and stool softner.
Lots of advice about constipation: Drink a warm drink in the a.m. Eat oatmeal or corn meal everyday. Drink a room temperature water bottle at night and she’ll poop by morning. Whatever…

POSSIBLE discharge date given by Dr. S is Tuesday. Poor Karen’s eyes got huge and nausea followed. She has a lot of fears.
Ann told Dr. S that Tom wasn’t coming until Wednesday and he seemed fine with that. The worst case scenario is Ann will have a roommate for one day.

Please pray that she will not let her fears stop her and that she continues to get stronger to face them.
Fears: eating and discomfort afteward, changing of pain medication after finally finding a good combination, BM’s, pain while walking – not being strong enough to go home when they say, etc Karen specifically asked that you would pray for her JP tubes to stop draining, she’d like them removed.

Thanksgiving

2005-11-24T13:46:00.000-08:00

Last night was a painful night. Not a lot of sleep was accomplished. Poor Ann had a tough first go at being alone with Karen. She handled it well. Karen’s pain was mostly from her lower back with intermittent gas pain. They tried rolling her and different positions, but nothing really helped. Benedryl was suggested and the ZZZZZs began. On Tuesday night and during Wednesday morning naps, Karen had bad dreams. Last night the dreams did not return. Yeah! Karen was very tired when I arrived this morning, so she napped a lot. Nausea reared it’s ugly head again, but meds helped that right away.
Her breakfast consisted of a few bites of scrambled eggs and 2 bites of English muffin and some orange juice. She mistakenly drank coffee (we thought it was tea) Yuck!! She then snoozed off and on until just before lunch.

She walked before lunch and she went far! She almost made it to the nurses station. She said that it went better than she thought it would. After returning to bed she coughed/yacked and tooted at the same time. We tried not to laugh until she was done coughing! It was a good one!

She is on continuous oxygen. We call it the Lasso now because when we had Karen stand up last night, both Ann and I forgot to take the O2 off. Karen’s head did a lovely backward swing and Ann and I about died! We quickly got it off and Ann dubbed it the lasso from then on.

I had a lovely visit from my Uncle Jim Larsen. My mother- in -law’s brother. It sure was good to see him again. Thanks Uncle Jim for thinking of me and my family today.

Lunch consisted of orange jello (2 bites) turkey sandwich (2 bites of wheat bread only) and cranberry juice ( drank almost all of it).

This afternoon has been consisted of a lot of gas bubbles that won’t go away. A reminder of Monday’s pain. It is a drag. When is this going to stop!
Tim called and Karen had fun talking to him between pain – it was a nice diversion. Thanks Tim!

The second walk – she made it to the double doors just before the nurses station. Not as far since she was battling the gas pain at the same time. Now she is sitting in the chair more comfortable, but no passage. Some nausea at the end of the walk with slight improvement when she sat. Once again the nausea meds helped.
Jane, our favorite nurse ( we really like her now) told her to go off oxygen and take deep breaths and let’s see what happens. She doesn’t think Karen needs it. We will keep the pulse/ox monitor on.

Good news is that she is taking Tylenol only if her fever goes above 101. We haven’t had Tylenol yet! The last temp at 4:10 was 97.2. YEAH!

Brief note from Ann:
That twin thing is alive and well here, Kathryn is amazing and anticipates Karen’s every need. I told Karen she was going to have to order me around because I didn’t get those mindreading genes! Kathryn told me a funny story about when Karen was really struggling the other night (Tuesday). It turns out that Dr. Gary told her in polite words to shut up because she kept answering for Karen! Kathryn couldn’t figure out his problem with that since she knew what was wrong and it was easier for her to answer than it was for Karen. Sure enough when Karen answered it was exactly what Kathryn was going to say!
My role is basically to provide sports analogies to get through the walks and pains. I am the chief cord unplugger now too especially since the lasso incident! I am also learning to call the nurses station and tell them about bodily functions as they occur so the nurse and come and measure, help, and provide the appropriate medications. I am trying to watch Kathryn and learn everything before she goes. She is incredibly capable in all aspects of Karen’s care and doesn’t miss a detail.
Thanks for all of your prayers, they are surely working as Karen makes progress by the minute.

Happy Thanksgiving to everyone!

November 23 - A Great Day, Indeed . . .

2005-11-23T23:11:00.000-08:00

November 23, 2005 Day 14

Howdy, All.

Being far, far, away like you are I have not had a lot to say over the past few days, but the happenings of the last 36 hours have me feeling pretty good, so I thought that I would take a bit of time and share some thoughts and updates with y’all. ( and if there happen to me more than one person in the room, that would be ‘all y’all.)

First off, can you believe what is happening with Karen? I know I sound like some kind of deranged fan at a Carpenters concert, but man what a great story. I, like you, am far away from all of this so my role now as far as recovery is to be supportive and talk on the phone and to that end I did my duty this morning, and I came away from the conversation with a smile and a shake of the head.

It’s funny how when a loved one is in the hospital that you have so many ups and downs that you find yourself in a sort of hazy blur most of the time so that the really good days seem to be nicer than the bad days, and the bad days aren’t really as good as the good days but it could have been worse, right? I think it is a bit of a coping mechanism and for myself I find that I keep my eye on the prize rather than stressing and worrying about what happened last night or this morning. While away, I really judge how she is doing by how she sounds, how long she talks, and what she tells me. Now I understand that you may read that and say, “ …so you’re saying what? The blog is not my friend? The blog speaks untruths? You don’t use the blog for guidance and the secret lottery numbers?” Au Contraire. While I am a Far Away Observer, I too rely on that information because the calls I get are generally not that long, the facts are fuzzy, and frankly I am not looking for the medical update while on the line. I am saying that with Karen, I can tell when a “fine” means I feel like crap or when “fine” means I feel pretty good but I don’t want to say it too loudly. It’s a matter of communication. That, and 16 years of hearing the occasional “that’s FINE with me, honey! Really. Fine. Enjoy yourself. I’ll be Fine.” Like the Eskimos, who have 37 words for 'cold', I know Fine.

That being said, a 30 second call with the Dear Dear ( that would be Karen for those who are now confused) tells me a lot more than a clinical list of the meds she is on that day. The first days after I left I did not sense to great a change in Karen. She was Maintaining The Proper Clinical Path but her information was groggy and her stamina was almost zero. After a few sentences of an update from her, she generally announced that she was tired and needed to go to sleep and that was it. Back to K1.

The morning after the fever hit I talked to her and she was upset. She had the energy to tell me in her own words how painful everything was and how frustrated she was that she had built up so much strength and was making great strides until the fever hit her. They could not get the pain under control and she was miserable and afraid for tomorrow. What was wrong with her? What caused the fever? Why did they take out the catheter so soon? When will the pain begin to lessen? Why do I have hallucinations and leg twitches? And let me tell you that just that conversation cost her a lot in energy points. She was abruptly done and it was game over.

But this morning, she was a different person. First off, she called me instead of vice versa which was a nice switch and unexpected surprise. Secondly, She launched right into how her night was and how she was feeling. While in the past weeks her sentences came in bursts according to her breathing (“I am fine but I’m feeling . . . . a little tired so I will take . . . a nap and then watch . . . . some TV . . . – sort of like Christopher Reeve used to talk if you can recall that) today she had something to say, sister, and she talked to me. Asked about the boys, what Tucker and I did yesterday on our daddy day and then quizzed me on the matter of now that I had done that with Tuck, was I going to do the same for Hudson. Well, that was a pleasant surprise and I wanted to test the brainwaves in the water if you will, so I asked her something that only she would know. I was going to the bank this morning to make a deposit for her Jazzercise and had been searching for her checkbook to grab a deposit slip. I had not found it so I asked her (very nonchalantly) if she remembered where the heck her checkbook was. I expected nothing. What I got was a, “ hmmmm. Well it should be in my purse. Where is my purse? Ahhh . . . try looking in the bar area and if not there then – oh, wait – crap! – I have my purse here in the hotel room. Why don’t you go upstairs, find a new box of checks and grab one of those deposit slips and if you can’t find that go to the bank and see Katrice. She’ll take care of it for you.”

My smile was very wide as she finished and my first inclination was to say something very juvenile like, “That was great! You put so many sentences together and they were correctly constructed with proper verbiage and no inappropriate pauses!!!” I quickly regained my sanity and condensed that into, “ Yeah, that’ll work.” Same thing, almost.

But there was no slur to her voice, no straining sound of effort behind the words, and she was more like my Karen than she’s been in 14 days and 9 hours. After that we babbled about something trivial for a minute and then she says, “ Is my mom there?” Well, we had far exceeded the talk range of 3 minutes or so that our conversations were normally limited to before Mr. Nap showed up so I said something brilliant like “ uh . . .sure. Love you dear dear . . .” and I pushed the phone at Joyce. Joyce then fled the room looking for another phone and so I turned and thrust the phone at Al, who was sitting defenseless at the table. Well, they both were on the line for several minutes before hanging up, giving this Karen-initiated call a duration of about 15 minutes. 15, I tell you!

Well that was cool. I was pleased.

And then tonight I got back from Small Group and there was Kathryn’s evening blog and it made my heart just swell. Things are sounding so very good, Karen sounds stronger and I think that the light at the end of the tunnel is starting to glow dimly again. I mean, I know Karen and there was not a doubt that she would bounce back from this dip but she has done it in extraordinary fashion! I picture Karen, Kathryn, and Ann all doing laps in the room and chattering away at the same time with Ann offering support and Kathryn cheeping away about how good she looks, how strong she looks, etc. and Karen watching the tiles slide under her feet like she is concentrating on a race that she is in. And then to finish off the evening with a light snow falling past the windows, blanketing the trash dumpsters and the ambulances, annoying the sleeping security guard, and covering up the life flight helicopters asleep on their pads in a fluffy coating of white. . . it’s a picture from Thomas Kincaid, almost. If he did inner-city DC scapes. In winter.

I think that tomorrow is going to be a new high in this adventure. I think that she will be walking good distances again, that her strength will be back, and that she will make a few trips to the arctic toilet in spite of the risk of posterior frostbite. I believe that she will consume more grown up food. I even believe that at least one, if not all of the JP drains will leave her.

And no matter what happens, I will give thanks. She’s still here, and she is getting back in to fighting trim. And we will bring her home, soon. That’s the prize.

And why, some may ask, must you fight so hard for this prize? Aren’t you angry at God for having to play this game? Ahhhhhh, grasshopper. . . . you miss the bigger picture. Who was it said that “what don’t kill you only makes you stronger”? Karen is going through this for some reason, and it is not for her, me, or anyone on this earth to understand why. To try to grasp that is fruitless, and a little naïve. How could we know and even if we did, what would we do with that information? Write and complain? Call some great No Help line in the sky? Worthless. When we are done with this, we will have gained a greater value for time, a true knowledge of the unfathomable depths of our friends’ and families’ love, and a strength that comes from God to persevere. Think about it. There are a few things that I can think of that would be worse to endure and I hope I don’t have to do them very soon. But if we do, we know right where we stand: with God, our friends, and our family right at our backs. So close are they, in fact, that if we even tried to step back in fear we would be firmly held up before we even had a chance to throw our arms back. And let me tell you, there is no better feeling than that. Everyone should be so lucky.

Enough said.

Sweet Dreams
Tom

Great day!

2005-11-23T19:28:00.000-08:00

Mark has already given you some of the good news about today. I will recap.

Her catheter came out this morning with much fear on Karen's part because it was so painful last time. I finally had to say that we needed to trust the doctor about this and it is 2 days later than the last time. No pain!! YEAH!
She was able to empty her bladder 3 times today so far. Once even managed to use the freezing restroom in her room after her second walk, but has decided that won't be a goal quite yet -too far away. First 2 ultrasounds indicated that she is empting it 100%. She experiences cramping afterward- a new pain, but hopefully this will go away once the bladder works more. We now have a bedside commode and a bed pan if necessary.

The best good thing that happened today came when Ann walked in the door! Her sense of humor and willingness to learn the ropes right away was great. Now I know how Tom felt when I walked in the door. YEAH!
Ann arrived in time to be a part of Karen's first walk ( the laps from the bathroom door to the room door). Karen was weak but managed well with discomfort. YEAH!
Her white count is going up! YEAH!
Her temperature has been 98.7 all day with oral Tylenol in her system. YEAH!

She is now on a solid food bland diet. No fruit of vegetables since they are perishable. Another rule: no perishable food in the room. Lunch was apple pie and bread and beef stroganof and cooked carrots or something. THe main dish was not pleasant to look at let alone smell. Ann quickly got the main dish out of the room and Karen concentrated on a few bites of pie and bread. DInner was a mistake. They brought her fruit. So they took her tray away and as of 10:00 pm the new dinner (chicken soup and crackers) had not arrived yet. A possible flash back to the light bulb senario.

During my nap I missed the second walk. Karen has to wear a surgical mask when she leaves the room. She hates it, but well what can you do... SHe onlyl went one door down if that much, but it is progress. YEAH! She feels weak so her strength has taken a hit from last nights' fiasco.

She is coughing a lot of flem up today. YEAH! She had trouble getting it to come all the way up yesterday, so they gave her this suction type thing she can put to the back of her throat to help bring it up. It kind of looks like a thin gun. She has become a pro at using it. She even coughed some up on her own when she couldn't get to the "gun" soon enough. Progress. Small steps are great aren't they?

Her third walk was out in the hallway and she went two doors down. YEAH! Ann and I could see the determination back in her face. It was nice to see I tell you! YEAH!

Another antibiotic has been added to Karen's coctail. I will list them, but I have no idea of teh spelling. Diphlucin, Cefapin, Vacomiacin, Tobramiacin. No explanation as to why one was added. A question to ask the doctors tomorrow.

Please know that your prayers are working. I firmlly believe it. Thanks so much and keep up the good work. Please continue to pray for teh fever to be conquered and we can get rid of the tylenol. Pray for continued postive attitude from Karen. She REALLY needed today. A lot of baby steps that we all cheered about.

I am going to sleep at teh hotel tonight. I have mixed emotions about it. I hope ANn will call if she or Karen needs me. Knowing her that will be the last thing she will do.
I am going to sleep with a light snow falling in DC. Kind of a beautiful ending to the day. It's been awhile since I smiled while walking back to my hotel room.

See you all tomorrow!

Kathryn

White blood count

2005-11-23T12:05:00.000-08:00

Ann arrived safely at the hospital and she’s already watched a movie with Karen and was giving foot rubs when I called. I didn’t know she knew how to give foot rubs. I know this isn’t about me, but …

Karen’s white blood count is back up. Her catheter is out. Her fever hasn’t spiked again which surprised her doctor. Her energy is high and she just finished doing 'laps' in the room (not walking the halls due to lower energy and infection concerns). “She is doing great” and is surprising the doctors.

Cracks me up, two swimmers talking about doing 'laps' in a hotel room. Finished a 150 today but didn't do any flip turns. The last 25 was a no breather. Wonder if they would wear those funny caps for morning workouts?

No flowers please!

2005-11-23T07:06:00.000-08:00

Wednesday morning:

Well, the fever was brought down by a cooling blanket and 2 ice packs. We eventually got rid of the ice packs. Karen was very emotional last night and didn’t like this turn of events. In her mind the fever brought forth the possibility of death, and it shook her. It took a lot of talking and I requested Pastoral services to come. We had a lovely visit with a female pastoral resident around 9:45 pm. She was able get Karen to be realistic as to what she can control and what she needed to let go and let God. She had Karen face her biggest fear, and to say it out loud, and told her only God knew what is going to happen, and that Karen was in charge of saying “I will” statements to herself of what she can do for herself. Such as:
I will continue to diligently do my breathing exercises.
I will rest and relax to let my body heal and fight this fever.
I will let all of these machines monitor and take care of my while I am resting, and trust that they work.
I will trust everyone to do their jobs!
I will go home.

She had trouble sleeping, as you can imagine with the cooling blanket. She got cold and wanted more blankets which we couldn’t cover her up too much since that would defeat the purpose. Some gas pains emerged without relief, but they were very infrequent compared to the last two evenings. They hadn’t happened in a while and I was getting concerned. Boy I was glad when they started again. Funny huh? I wish they would “see the light” more quickly thought –those sad – lost bubbles. By 1 am we were a bit desperate for sleep. The nurse came in with Toridal and she went to sleep for a solid 4 1/2 hours. YEAH! We are beginning to love Toridal it seems to do good things. Her self administration of her narcotic goes down when she gets it.

Our tube count remains at 5. Our IV bag count went up from 3 to 4 since the 3 antibiotic cocktail is given intravenously. Our machine count went from 0 (we got the monitor off yesterday afternoon) to 5. 1. Pulse/Ox monitor 2. Cooling blanket -a machine keeps the water at a constant temperature) 3. The heart monitor got put back on 4. Automatic blood pressure cuff that took her blood pressure every two hours. 5. Oxygen – although the doctors didn’t really think she needed it once her respirations got back to normal, but Karen opted to use it while she slept.

This morning she is now on a Neutopenic precaution which will help protect her from bacteria. A sign is on her door. She cannot have any flowers since standing water tends to create stuff to grow in it. So, no more flowers until further notice!! Any one who visits and has a cold, must wear a mask. I, and all others that come to her room must wash their hands before touching Karen. I was already pretty good about that, but not 100% especially in the middle of the night. It won’t be too hard to make it 100%.

Her pain is better. She took the o2 off this morning. SHE is very tired and keeps falling asleep – good! We will let her body rest and hopefully we will walk later in the day. We have permission to turn up the blankets temperature since her body temp is 97.5!!! She will get Tylenol suppositories (she doesn’t like them – who does!) to manage her fever. She is happy to be warmer. We won’ t take off the cooling blanket until we know her temp won’t spike again.

We are glad that our sister in law (Mark’s wife) is coming today to help out. Thanks Ann for giving up your Thanksgiving for us we really appreciate it. A second set of ears and hands and encouragement will help both of us.

I must admit that last night put an emotional toll on both of us. We both cried in front of each other. This just wasn’t in her or my plan. I guess we both need to trust God will get us through everything. A lot happen quickly and we didn’t react well to it. All of the sudden there were 2 nurses and Dr. Gary (who Karen and I can’t decide if we like) there all of the time with all of these machines coming in. It was overwhelming to say the least.

Pray for the medicines to work on her fever so the blanket can be taken off. Pray for her body to fight this fever. Pray for positive “I will” statement to be focused on today.

Thanks to Mark for posting the blog last night on my dictation. Thanks Mark for your encouragement and funny jokes too – I sure needed that!

I am a day behind on all of the emails. She will hear all of them eventually. She loves hearing from you. Sorry I am not responding to the emails as I wish I could. Know she appreciates your thoughts.

That is it for now.

Kathryn

Cooling Blanket

2005-11-23T02:44:00.000-08:00

Last night Karen received a cooling blanket and Tylenol suppository which reduced her fever to 99. She also received a muscle relaxant and more wires. She is now hooked up to a pulse monitor (the finger) and a blood pressure cuff.

Ann heads to D.C. this morning and is leaving early to beat the I-95 holiday traffic. Overheard Karen last night saying she is looking forward to Ann's visit but she could be hallucinating again. She’ll be the first advocate to arrive with a pad and pencil rather than a laptop. Might be rough.

Fever

2005-11-22T14:41:00.000-08:00

Karen has a 102 degree fever. They don’t know the cause and are taking urine samples, blood cultures, and chest x-rays.

Additionally, her white blood count is low. This occurred two days ago and she received Neupogen. She responded well to that drug and her counts were back up so they took her off it this morning. She'll return to this therapy.

They diagnosed this condition as Febrile Neutropenia which can occur after chemotherapy.

In addition to being treated with Neupogen, she will be getting three antibiotics for the next three days along with Tylenol.

Her hallucinations are still occurring due to the pain medications. They are going to continue to administer the same pain medicines until her temperature and white blood counts return.

Karen’s red blood cell count is also down. They are going to give her Darbepoetin.

Good news.

She hocked a luggie yesterday and another one today. Her distance wasn’t very impressive but that’s another goal to shoot for. She is also passing gas – painful but relief at the end.

While talking with Kathryn, they had the 3rd fire drill. This means Kathryn and Karen can’t leave the their penthouse. Like Karen is going to leave the room anyway.

This posting has lots of long words that mean gobble-de-gook to most of the readership. However, her prayer requests are simple - lower pain and fever.

Tuesday morning through lunch

2005-11-22T09:58:00.000-08:00

Last night was pretty good. If it wasn’t for the gas pain with would have been a great night. They seem to get stronger and more frequent but there isn’t a result! It is so frustrating. I got my best sleep yet, and Karen actually had to yell at me to wake me up once last night. Thank goodness her NG tube is out and she had the voice to do it. I guess with the ear plugs and getting used to the beeps and blurps I am finally able to sleep more soundly when to opportunity of sleep is there.

The pain continues this morning. We will add a pain medication that will help her rib pain while walking. It is called Torital. She is sleeping as of 9:15 and when she awakes she will get this in her system – then try her first walk.
There are some minor details I think I have forgotten to write about. She has had a low grade fever of 100 degrees since yesterday morning. We are told this is fine and not to worry.
Early this morning on rounds she was told that her red blood cell count has been low for the last couple of days. It is not rebounding so they will give her some medicine – the name escaped both of us- to stimulate the bone marrow. This should give her more energy. Her white blood cells are low as well and she has been receiving meds for that the past couple of days. This med is called Nupirgen. She continues on the blood thinner Heprin.
Another side effect of the narcotic are small hallucinations. Sunday night produced two. One was a pyramid that had lollipops all over it. Karen’s favorite was the multicolored high top tennis shoes – “they’re so cute”. She didn’t have any last night. That is good. Personally I wish we could get this pain taken care of without the narcotics. She doesn’t like feeling so tired and dopey.

Anway, we really hope the walks go well today. This is a frustration for her not being able to do that without pain or wooziness. She feels her body is letting her down. I addressed this issue privately with the cute green eyed doctor this morning. He assures me that everything happening is normal and that she really is doing well. I passed this message on to Karen. Cross your fingers folks!

11:00 am Karen’s first walk was out to the hallway, and she made it only two doors down from her room but that is progress since yesterday. She received the Torital before her walk, so it required less narcotic. It worked. She had to turn around due to being tired – not pain driven. YEAH! Torital was only order once for today. We will request it again for the next walk. Her lower left eye puffed out but is lessening. We are hopeing that it is not a reaction to Torital because we like it!
She and I accomplished our first bath together. Usually the nurse does it while I escape. Our nurse today is not as efficient as our Jane of the past. Her spirits are better after the walk. She was disappointed on how little she walked – so I see motivation setting for the next walk –YEAH!

I left her with her first all liquid meal. She is not hungry at all. I opened the chicken broth and quickly shut it - the smell did not go well. She tried one square of the red jello - wrinkled her cute nose and we put that away (too sweet- is there such a thing?). I left her with the tea and cranberry juice. She was told not to rush eating. I don't think we will have a problem...
Thanks for all of the cards and care packages.

Monday Evening

2005-11-21T18:55:00.000-08:00

Well, Tom got it mostly right except the catheter issue. Here's the scoop. I was able to get away to the hotel for a while, but I promised Karen I'd be back soon.

The good news is that Karen got her NG tube out this afternoon. She is doing well without it so far. The JP tubes are producing a lot less. She also got her catheter out. That did not go well. Too much pain and distention of her bladder, and she couldn’t pee to relieve it so it has been put back. They may try again in two days. Karen will be hard pressed to try it tomorrow.

Karen’s first two walks were unpleasant with nausea.

The frustrating news is that they believe her muscle twitches and nausea are a result of the amount of pain medication she is taking that has a cumulative effect. They took her off of it totally for a little more than one hour. Of course, they started when I was at the hotel – I had no idea. Karen called me after ½ hour and asked me to come over. I arrived to Karen in pain. Wow, that wasn’t pleasant. She is now on half the original dose (.2)/.2). She is still uncomfortable and afraid to move. Now we have to decide how much to increase the pain medication if it is needed. Either increase the base level or increase the self administered amount. The muscle twitches are coming back already, but not as frequent. Our other option is to change narcotics/medications.

The third walk today, after the new dosage, was painful – she couldn’t go much further from her room. The nurse told her she didn’t have to walk tonight, but Karen was stubborn and wanted to try. GO KAREN!

Her gas pains still persist with a vengence and with no “end” result. Gosh, I sure wish that would happen.

We have increased the dosage this evening to .3 – base level and.3 demand. Dr. Gary wants to talk Dr. S about changing her meds to possibly Torital which is a non-narcotic.

She will start real food tomorrow now that the NG tube is out. They will try to switch to oral medicines as well in the next couple of days. We really need to get the right “recipe” for this pain. So prayers in that department would be great. During the extreme pain from the distended bladder and the lower dosage she said this whole thing wasn’t worth it. Then I read her some of your emails to her and her spirits got a little better. Thank you all!

That is it for tonight.

Kathryn

Monday Night - Crappy Monday

2005-11-21T18:24:00.000-08:00

Monday November 21, 2005

Kathryn still can’t get the computer to talk to the network at the hospital, and she has not been back to the hotel all day, so I am back to give you my understanding of what is happening. I talked to her at about 6:20 Pacific and Karen did not want to talk to me because of the pain and discomfort. I got the scoop from K1 and I will do my best to relate it to you. I don’t know if I have the facts completely, but will do my best.

This morning they removed the NG tube. That’s the good news. The bad news is that now comes the time of fear in that because the tube is gone there is no back up to prevent nausea and remove the bile from her stomach. It either goes through the proper channels or it comes out the entrance. The latter is not a good option. So she is wrestling with the discomfort of her now-vacant esophagus and throat which will take time to heal plus the heavy fear that their may be a wretch in her future. Result: Tense.

They also decided to remove her catheter this morning, which sounds like a great thing. But what if it hurt to sit up, much less get off a chair and onto a bedpan or try to stretch for the toilet? (That’s a 5 minute walk across the room) Not good, and apparently her bladder is working just fine which caused some very uncomfortable messes in the bed and surely upset her something awful. I know that this would make her very upset and K1 handled it well. After a stretch without the catheter, they huddled up and decided that they should not have taken it out and decided to put it back in. Any of you ever have one of these things? Like driving a bus through a drinking straw, and about as comfortable. When they re-inserted the catheter it was incredibly painful and that was all the more part of her crappy day. Result: Lots of pain, but better peeing.

They also came and stripped the JP drains today (see yesterday’s blog for a play by play of that thin slice of heaven) which only added to her pain and frustrations. Result: more pain.

Then the capper. The docs got together and decided that the muscle twitching and some of the nausea that she has been experiencing were the result of too much pain meds, to they decided to cut her Dilaudin in half. HALF. Add up the above pain and discomfort and then take away pain meds, and, well, I cant imagine.

Seems they are trying to solve the twitching and nausea and at the same time wean her off the IV based meds and onto the oral meds. At the same time. I feel awful for her.

K1 was calling a meeting of the docs as we hung up to get this pain under control.

Oh – and get this – someone, I don’t know if it was a doc or a nurse, mentioned that they might release her from the hospital this weekend. She went into low earth orbit. Still eating through an IV, four JP drains hanging off of her, can’t walk to the toilet, and they are talking release????????? She had a fit, and rightly so. Turns out someone was running their mouth or said it in jest and that is NOT the case. Well, no kidding. But the damage was done and I am sure that she went from 0 to Terrified in about .1 second. If they tried that crap I would be on a plane tonight if need be and get that handled. What a load.

So, it’s not pretty. Pray for less pain. Pray for getting out the drains. Pray for strength for K1 and Karen as they are going to need it.

I hope I got all of this right and I trust that K1 will get that computer whipped into shape ASAP!

Keep the emails going K1’s way. When she gets that computer up, she can read them all to Karen. That will help. I am praying that in a couple of days this will be a memory and we can start looking to a week down the line when she is making some progress against the pain. It’s hard to believe that she is not even two weeks out of surgery yet. Seems a lot longer than that.

Tom

Monday - mid day

2005-11-21T09:06:00.000-08:00

I am so sorry you haven't heard from me for a while. I can't get connected at the hospital anymore. I will work on that later. I write from the lounge in the hotel. As Tom had kindly posted for me last night, Karen is going through some rough spots, physically but more emotionally. She is tired of pain, and discomfort. She is tired of shots, NG tubes, just about everything.

Today she started feeling good. The night wasn't as bad as predicted. A lot more gas pain last night, but not untolerable. This morning's visit with teh senior attendent said that he thought the NG tube and the cathedor could be taken out today. Karen is a little concerned since she moves so slowly about “making it” to the bathroom. They will bring her a bedside commode if this actually happens. Of, course there is always the dreaded bedpan as well. We will see.
The muscle twitches may be a result of an imbalance of her electrollytes adn they will check that.

This all happened before Karen got out of bed. After a bath and sitting in the chair we decided to walk. During the first walk everything changed - she got woozy. We barely left the room. We high tailed back to her chair as quickly as possible and called the nurse and got the basin. She came and connected Karen to the NG pump and was able to extract some "stuff" She gave her her gas medicine and then we all waited. I must say I almost panicked and had visions of her throwing up. She has since been woozy off and on with various degrees of wooziness. This makes her very sad and frustrated - small tears again then pain in the throat from crying.

She tried a second walk after being comfortable in the chair for awhile. We only went a small way wehn she ahd to turn around. Put her in bed and the wooziness was still there but not as bad. The nurse assured us we can wait to get the NG tube and cathetor off. I said we would do that since it now frightens her to think about going without them.

She is resting and Dr. S ahs not shown up. I got tired of waiting and am eating lunch and getting a shower. Hopefully a nap later this pm

Her ribs feel more tight than painful today - progress. Now that this new GI pain has started it would be nice to get rid of, or lessen an old pain.

Please continue to send her emails, etc her way she REALLY loves them.

Please continue to pray for emotional and physical strength for both of us.

Kathryn

Sunday Night - Email alert!

2005-11-20T19:47:00.000-08:00

It was a very painful day with the gas bubbles rearing its ugly head more frequently, and this is progress but is causing her to press the meds more often which makes her feel better but also makes her very groggy and having to take so much pain killer makes her unhappy.

The first walk of the day was uncomfortable, the second walk went well, and third walk made it past the nurses station and back (which is a good 200ft round trip) and she said that felt good but was very tired after that. The fourth walk was very uncomfotrable and didnt get 5 feet from thedoor because of the pain, and once she got back it tok her a long time to relax from being so tense. Everything was painful from then on.

She finally got relaxed and then they showed up and stripped her JP tube drains. This is a new thing in the last few days. The take the drains and pull them out straight from her body and then squeeze the tubes and pull towards the drain. The reason is that as the volume of fluid decreases, fibrous liquid tends to build up in the tubes, blocking drainage. The do this clean out to make sure that it continues to drain. It's very, very painful.

Then the daily heparin shots in her arm were given, which burns a lot, and she cried.

She is at a point where she wants the pain and prodding to just stop, and wanted me to let everyone to know that she is feeling really low right now and can use your prayers.

Great news: No nausea at all from the NG tube being clamped off. the test numbers for the bacteria count or something in her belly are going down constantly which means that her stomach is cranking up. The number will be checked every 6 hours and hopefully we lose the NG tomorrow.

if you have the time, would you send Karen a cheer up and hang in there email? Send them to me at kathryn.rudd@comcast.net and I will read them to her as soon as I get them.

Thanks, everyone. I'm off to be cheery.

Kathryn

Saturday night

2005-11-20T06:49:00.000-08:00

We had an interesting night last night on 11/19 in to 11/20. It was started with Karen not being able to sleep! She had a new discomort that started after sitting in the chair and getting back in bed for the night. It was a tight feeling smack dab in the middle of her chest area between her breasts. We called the nurse after it didn’t go away. She came in and asked questions then went to call a doctor. She then came back and said Karen would get an EKG and a blood draw as a precautionary measure, which is normal procedure for Dr. Sugarbaker patients. There goes the dream of an earlier bedtime. The tabs for the EKG were needed in the area just about her right chest tube location. We called the nurse in to see if the dressing could be moved to place the tabs onto her skin in all of the right places. These tabs were blue and square. Her chest looked pretty colorful with her circular monitoring tabs and these put together. With “the girls” showing and all of these tabs were on, and her hair in a pink scarf, Karen joked by saying “hey Tom, take a picture!”

Karen proceded to have trouble sleeping so she was given liquid Benedryl. Around midnight (after another fit of giggles) we were able to sleep. What a glorious sleep. We both slept soundly for 3 hours. She was awakened by the same old lower back pain, and rib pain. There was some GI pain but it went away. We were awake for 2 ½ hours after that trying to catch up to the pain with the meds. Even reading a book to her, Peace Like a River, didn’t put her out like it always does. We asked for Benedryl again. Normal protocol said they weren’t suppose to have it after 3pm but Michelle our nurse broke the rules for us –Thanks Michelle! We finally slept at 5:45 until 7:30.

Dr Sugarbaker just came in. Everything came back normal. Dr. Sugarbaker said that the chest discomfort is most likely a result of the NG tube irritating the esophageal passageway. Guess what the treatment is! Walking and sitting straighter in the chair. We are clamping the NG tube to see how she does with out it. They are suppose to check on her every 6 hours. If she doesn’t get nausea and discomfort all day than it will taken out “sometime” tomorrow. If she is teh slightest naseated it get turned back on. She can officially take a shower. NO WAY until hot water rears it’s head in this room! WE ran the shower ane it is luke warm. WE will see...

Have a great day everyone!

Kathryn

November 19 Tom Coast to Coast

2005-11-19T21:47:00.000-08:00

November 19 – Tom on the way home

Baltimore (AP) – Here I sit in BWI waiting for the flight to Chicago and then home to Palm Springs. Listen all you Washington DC dwellers: you have my admiration and respect. This traffic nightmare that you live in – I don’t know how you deal with this quagmire on a daily basis and maintain your sanity. I know that I was gazing longingly at every Metro Station that I passed, wishing it was going where I was going. I came up the main drag from the hospital, Georgia Avenue, and they had closed the street down for a parade!!! A main thoroughfare and state route and Mickey Mouse was slowly walking down the middle of it! “That’s insane”, said I as I wove the White Turd into the hinterlands of Silver Spring trying to find my way around the inconvenient blockage. I drove through some beautiful neighborhoods of million dollar cracker boxes and did end up back on Georgia at the 495 without much delay and while doing that it occurred to me whey they had chosen Georgia for a parade: It’s the only frickin straight street for 6.2 miles! They had no choice in the matter, and I can see that now . . . but man! And on a Saturday, too. What are they thinking? Crazy Colonists. I will gladly take LA in rush hour. We have straight roads.

The cancer news weighs very heavily. Since the situation has changed so drastically in the last few days as far as the prognosis goes I am thinking it is going to take some time to sink in. While right after the surgery and before the pathology reports came in I was seeing some light at the end of this tunnel and could see lots and lots (maybe LOTS and lots) of Karen years in the future I was very confident that we were well on our way to crushing this thing. After all, the surgery had gone perfectly, right? Yeah, it did, and that is the great part of the story. When we sat with Dr. Yoo he made sure that we understood that diligence on our part is key. We need to keep the cancer watch team on high alert not just in the next year, or five, or ten, but for the rest of Karen’s life. Unlike a breast cancer, a prostate cancer, or other types of cancer where you are considered cancer free and cured after five years or ten years depending on the disease, you are never, ever considered free of this Adenocarcinoma. It’s on board for the entire ride, and what we have to do is watch it like the terrorist that it is, and if it so much as looks at us wrong it gets a mighty whack with a small sledgehammer. That’s all there is to do.

Keeping Karen’s attitude and health up will be key because if she is not strong as we fight this, she will lose. That’s not a might, that’s a will. Jazzercise! Jazzercise! That will be our mantra. . . . We need to watch her weight as well as her physique. She cannot get too thin and sinewy. I can’t believe we are back to the original mantra that Dr. Luke gave us in February: “ There are no skinny cancer survivors. Period.” So there we have it.

There for a while I was relaxing a bit on the travel and adventure schedule for the upcoming years. Right after the diagnosis I was of a mind to pull all of our dream trips forward and show the boys some of the wonderful things out there while we still could as a family, even though Hudson is still probably too young to absorb a lot of it. After things began to lighten up a bit that schedule relaxed, and the schedule stretched out again. Now, in the last couple of days, the travel agent in me is trying to get as much as possible pulled forward again. Where to start? So many adventures that I want Karen to have and enjoy with the boys, not just for her but so that the boys can look back on their childhood and have great adventures to remember with the family and Mom. Hey, maybe this is all overkill and Mom will be there for decades and that would be a true miracle and blessing, but I don’t want to take that chance. This is God’s timing, not mine. I am duty bound to make the most of what He gives us, and I will do everything I can to avoid ever having to look back and say, “we really should have done that . . . “

Bring the car around, Jeeves. We’re going for the country in a drive.

Of course it’s possible that none of this bad stuff will come to pass, and I am reluctant to look out that window right now, for fear of it falling on my fingers. Maybe in a while. For now Karen has to heal (which she is still doing in spectacular fashion) and we need to bring her home and get the chemo started so that we can finish it. (It works that way, doesn’t it?)

Chicago – I was planning to write some more while in the air, but the man in front of me decided to recline his chair for more legroom. I guess you can never have enough in the emergency exit row. The guy next to me was about my size, and we were both amused by the fact that in the travel magazine there was a small article about how to relax and exercise during your flight. Exercise! Well, I am all for that so I read on to see what amazing revelations that this magazine had.

1) The Ankle Roll. I can do that! Once I slide my backpack from under the seat in front of me, making careful use of the aisle as my feet and luggage pass by each other. Yes . . . yes . . . .that’s nice. Ankle Rolls. I feel more fit already.

2) Leg Muscle Flexing. It keeps you loose and relaxed during flight. That’s cool, just have to make sure I put my tray up or my onboard beverage and complimentary dozen mini-pretzels will end up in the magazine pocket. So, tucking in the elbows before we attempt a maneuver, we grasp the can with the left hand and the napkin and plastic grip-proof cup and stuck, attached napkins to the other and lift. Maintaining a careful distance between your elbows and the seat behind you (0.088 of an inch) and the back of the reclining seat equipped with the high-buffed bald spot in front (1.8334 inches) we flex! And release. Flex! And release.

Oh, that’s not very exciting. Lower tray with left index finger and return to normal sitting position. Keeping your elbows close to your sided, bend your head over and meet your hand for a refreshing sip of beverage. The Cup Curl, I suppose.

3)Lift Your Knees to your chest. Yeah, right. I can’t even see my knees because they are underneath the seat back of the guy in front of me, who is literally 6” from my nose. Ahh. . . that’s a good one.

Anyway, I am home now in Palm Springs. Bumpa and Grandma, along with Tucker and Hudson came to get me. It was a happy reunion! Tomorrow Bumpa and Grandma get the day off while the Guys and I go visit Thomas. They have earned their rest to be sure!

You read the great news about Karen and the poos, right? Fabulous news indeed. It’s the little things in life, I tell you!

Tom

Saturday evening

2005-11-19T19:41:00.000-08:00

Here are some little events from this afternoon. We have had two fire drills today. Dr. Red was called over the intercom. This consisted of putting the dirty linen bin in our room and any of Karen’s full trash cans in the room to get the hallways clear. They are normally in the hallway so housekeeping doesn’t have to disturb us by coming in the room. The fire doors in the hallway were shut. We were not able to leave the room until Dr. Green is called over the intercom with an “all clear”.

Uncle Bob and Aunt Ginny visited us. It was great to see them and Karen always enjoys their visits. They have kindly agreed to do laundry for us. They are terrific! The laundry room in the hotel has a drier that takes forever to dry clothes and it is a big waste of time for us.

We are working on trying to get hot water in the room in anticipation of Karen’s first shower. We like to think big at times. Everyone seems surprised to find out that there is not hot water in the sinks. Our new response it “we challenge you to try it”. No one has taken us up on it. We hope that this issue doesn’t take as long to solve as the light bulb!

Karen has had longer naps today – at least ½ hour.
The biggest news is that Karen has had a very small BM movement. She has no urges or warning of this wonderful event but it is progress. This may start a series of discomfort for awhile as the bowels wake up even more. The nurse said she heard really good bowel sounds. The good night we were looking forward to may not happen, but we hope we are wrong.
That is it for now. “See you all in the morning”
Kathryn

Saturday afternoon

2005-11-19T11:05:00.000-08:00

O.K. it is mid day around 1:45. Karen has had a bath, walked twice (once with Tom before he left and once with me after my 2 ½ hour nap and shower in the hotel room. She sat in a chair in between walks and stated that if felt good. Tom left at 10:15 and I arrived at 12:30. Karen seemed to be comfortable being left alone that long watching TV and snoozing while waiting for me to show. Did I mention that Dr. Sugarbaker came in this morning? He is on call this weekend, and came in with his residents. He is pleased with Karen’s progress. He anticipated the horrid NG tube might be able come out “soon”. Oh what a Happy Day that will be! We, of course imagine tomorrow might be the lucky day. She is feeling pain in her stomach area when she walks but that is normal. She is encouraged to walk with as good a posture she can (no huching, Jane the nurse keeps reminding her). This seems to stretch things out and Karen can feel it. SHe is doing well.
I wanted to add to Tom’s notes. The chemo therapy treatment they will use is borrowed from Colon/rectal cancer treatments because this cancer is the closest “cousin” to appendix cancer. That is how they determine what treatment to start with. If the first treatment doesn’t work, or is not as successful as needed (CEA not going down) then there are 2 other treatment plans to try.

Karen did not ask Dr. Sugarbaker’s “prognosis” this morning and I felt it was not my place to ask. I think she will address it when she is able. Most likely it will only be guesses anyway.

KEEP PRAYING!

Friday night

2005-11-19T06:11:00.000-08:00

Last night was uneventful. Karen slept in 1-2 hour sessions – with 30-60 minute awake time in between. The ribs hurt in the chest tube area, but the lower back pain was much better, but not gone. Still no nausea. The 4 remaining JP tubes will stay in today as well as the NG tube. They may try to clamp it off tomorrow to see what happens. The color from the tube is moving from a dark green to a lighter green which is a good sign that the bile seems to be almost gone from her stomach. Unfortunately the NG tube got blocked sometime from 3 am on and no one noticed until the Senior resident came and took care of it this morning. It was a little uncomfortable “catching” up, but things are good. No “toots” yet, but there is still hope! We were told to walk walk walk today. I am off to a quick nap and shower. I am tired. I will check emails after that.

Please note that my priorities here are; to my sister first, myself a close second, and the blog third. I will do my best to keep you posted on major happenings. If you haven’t heard from me please know that all is well.

Karen’s spirits seem good. I think the visit from the oncologist is still settling in her mind. Please keep both Tom and Karen and their families close in your prayers now that the road to recovery and healing is a bit longer than desired or anticipated.

Kathryn

November 18 Meeting with Dr. Yoo - Oncologist

2005-11-18T18:19:00.000-08:00

November 18 Consultation with Dr. Yoo

This evening we met with Dr. Yoo, a medical oncologist who works with Dr. S and his patients. He is the only medical oncologist amongst a staff of surgical oncologists and this makes him jibe quite well with Dr.S’ treatment system.

As he explains it, there are two parts of the treatment that determine the potential outcome of the procedure.

1) the amount of cytoreduction that is accomplished during surgery, which relies on the skill and experience of the surgeon. It also is determined by how much of the tumor is interactive with organs, IE some bit of the tumor wrapped around a crucial organ or nerve system, prohibiting its removal. If those types of tumors cannot be removed, the success rate of the surgery is lowered. Karen’s procedure was the highest success rate possible.
2) The grade cancer that was removed. The more aggressive the cancer, the lower the survival rates are. One would hope for a low grade cancer, but there is also intermediate and high grade cancers.

So – follow me here – the worst case scenario would be a low success cytoreduction with a high grade tumor, and the best case would be a CC1 cytoreduction with a low grade tumor. And in between there are all the other combinations.

What Karen has is a perfect CC1 surgery with a high grade cancer. We were hoping for intermediate to low grade cancer, but what we have is a mix of intermediate and high grade cancer. Because of the high grade tumor, we now must include systemic chemotherapy as part of this treatment.

Now I am sure that you may remember hearing that systemic chemo does not work on this kind of cancer, and before you perform the surgery that is true. However, after the surgery, the heated chemo treatment, and the follow up with 5FU the volume of cancer cells likely remaining is within the range to be addressed by systemic chemo. So while the systemic approach can not touch a belly full of cancer and mucin, it can make a run at a ‘cleaned up’ belly.

As soon as Karen is deemed healthy enough (as determined by Dr. Luke at home) she will begin 6 months of chemotherapy. It will be a 48 hour treatment once every two weeks for a 12 cycle program, or 6 months. It will be done as an outpatient procedure. NOTE: Dr. Yoo will give us a written consultation report with the names of all the chemos to be used in the procedure, and we can forward them at that time. Go with me here. . .

The chemo has some serious side affects, the most notorious being a tingling sensation all over the body that feels much like after a limb wakes up from being asleep. There also may be some nausea. Good news is that only 5% of patients lose their hair any more, so that my not be an issue for Karen. She can and will be encouraged to continue exercise and Jazzercise throughout as much as possible.

That’s what we know right now, and there are still many unknowns. Dr. Yoo stressed to us how rare this cancer is and again reminded us that because it is so rare, there is no track record of treatment or survival. He did stress that these chemo regimens are FDA approved and are used by Colon cancer patients regularly. But again, it is a borrowed procedure that shows good results since there is not a specific, trial tested chemo for this Adenocarcinoma.

We are quite bummed out, and face this with disappointment. The biggest bummer is that while we have a good surgery, this aggressive cancer is frightening, and we don’t yet know what Dr. S has to say about survival rates in this scenario. We will talk with him about this.

So we charge forward. First thing is to get Karen healthy and jazzercising again. Then we attack with Chemo. After that, we test her regularly with the CEA test and CT scans, and go from there. We will take them as they come.

Talk to you all soon.

Tom

November 18th - The Morning Edition

2005-11-18T09:06:00.000-08:00

November 18 Morning Post

And how is your morning? It’s already been a hopping party here at Washington Hospital Center. I arrived this morning to find that Karen had a good night, and is being spoiled by Kathryn as only Kathryn can. Karen says that if she pushed the pain button, moved in her bed, or made any kind of noise Kathryn would jump up and run to the bed. Kathryn read her books, they watched TV, and gave Karen ice and water. I believe that as a nurse, I fail miserably in this light. I did not even think to read her a book in the middle of the night. I can sure fix an occluded TPN line, though. Yes, sir. We all have our strengths

Apparently Karen still only slept in spurts of an hour or so, but they were sound sleeps. Now that the chest tube is gone from her right side, it makes it not only plausible but somewhat comfortable to sleep on her side for a bit, and that is what she did. She looks pretty good, I must say. The gas bubble is still on board and shows itself every now and then, causing Karen a bit of pain as it rumbles around. Foolish gas bubble! Why wont you show your face to us? Verily, we require you to come into the world and be smelled! I hope it finds passage today. That’d be good . . . . and smelly. I’ve tried to “seed” the process with some gas of my own, but that does not seem to be working well and earns me only a grimace, roll of the eyes, and declaration that I am truly a disgusting human. I’m just trying to help.

Today is Friday, and at WHC that means Time For The Doctors To Show Everyone What They Are Doing Day. This is Dr. S’ big rounds day, and this morning at 9:30 he and about 10 of his closest doctor friends came a-calling. Karen had just concluded a record-breaking walk from here to the lounge where she enjoyed stunning views of Irving Street NW. She shuffled back to her bed just in time for the Sugarbaker Show. He was most gracious as his PA Rob read Karen’s stats to the group and they dutifully scribbled down things like JP outputs, white cell counts, and the like. Sugarbaker almost beamed with pride as he checked her vitals, looked at the incision and talked about the procedure. He introduced himself to Kathryn and declared that he would not have made THAT connection.

When they got to the point of talking about tubes they arrived at the left chest tube. “ We’re down to 85CC on that. What do you think?” he asked Rob the PA as he gazed over his reading glasses and waited for an answer. The question hung in space for a few seconds and then Sugarbaker said, ‘let’s get it out of there.’ I personally thanked them all for coming and said that the removal made the visit worthwhile.

He also spoke in detail about her white cell count. Those little devils are the ones that attack infection and generally eat the bad guys. Her count is down on the low end of the scale, which is expected after chemo. It has gone from a 14 down to a 4.5 in the last few days. This is par for the course, and they are going to give her some meds that will boost the production of white cells to keep her in the green, so to speak.

So they breezed out of the room, and soon after Rob the PA and another doctor zoomed in and told Karen that they will be back in a few minutes to remove the left chest tube. They returned ahead of schedule and proceded to remove the tape, cut the sutures holding the tube in and then, while Karen hummed an off-tune broadway song, Rob whisked the tube out. It sounds a lot nicer now that I write about it, but it was pretty painful, mostly due to the sutures. This doc apparently was not very gentle and she was downright pissed off at him for his lack of gentility. She was so mad that she demanded that I agree with her that he was a jerk and directed me to massage her feet right away. Yes, ma’am! How do you respond to that? “Gee, honey, didn’t look that bad to me.” “Golly, you’re just exaggerating.” I think not. Who knows how all of this feels, but in my opinion just about everything must at least ache if not downright hurt. Today was the first time that I saw tears in her eyes but I did not know if it was from pain or the frustration of the doctor thing. Karen asked this morning if this was all worth it. Of course it is! It’s just tough to get philosophical with her when it hurts to swallow and she can’t even sleep.

Plus, as I believe that Kathryn made note of, the Central Line was removed from her neck today. That was not really a big deal for her, and the bandage over that little hole will be off by tomorrow. Happy days!

Tube Count: 5 Today we lost the left chest tube and the central line. Now, all that remains are the four JP brothers (1,2,4 and 5) the NG tube, her catheter for pees and the PICC line, which I see as a long term resident.

We interrupt this blog entry for a quick message for Karen, who asks me at this moment to relay this to everyone:

“ Thanks for the mail and the flowers and . . . zzzzzzzzzzzzzzz.”

And although Karen’s verbose tome is difficult to follow, it does bring to light a very important and cheerful topic. The cards and flowers that have been arriving daily are truly a delight to her. The first batch of cards, some dated as far back as November 9 arrived today by the WHC Mail Technician. I simply open the envelopes and then she takes out the cards and reads them. I am reminded of the Third Duchess of York who, back in 1774, used to speak of the great joy that she found in the colonists’ consumption of tea as a cheerful part of their lives. Some of you may have heard me read from her historical quotations on the subject. She did have an inspiring way with words.

But again I digress.

While I am away from Washington, I need you all to make a note to change the address for getting messages to Karen. You certainly may continue to send them to me, but the most direct route for information to her will be through Kathryn’s email at kathryn.rudd@comcast.net . Don’t forget the dot between Kathryn and Rudd.

Tonight we talk to Dr. Yoo about the ongoing chemo situation. I hope that we are not talking a huge regimen here. That’s really all I have to say about that.

I am heading home tomorrow, and am looking forward to seeing the guys very much. It’s going to be tough to leave here, however. It’s that feeling of “ ten minutes after I leave something is going to happen and she will need me.” Life has shown that it is rarely as bad as the mind makes it, but it’s a human thing. I am so glad that Kathryn is here to watch her, and I am also a bit envious of her because the next week she is going to see changes in Karen that I have been hoping for. It will make returning on the 30th that much better, though.

Speaking of wondering about the useless, I wonder if the White Turd will start. I have not seen that little heap since the 8th. I am sure that it is still there, but I hope it will run. (Isn’t my faith in the mundane inspiring? I am sure Karen is going to be fine but I doubt that a GM product will start after 9 days in a parking garage. I am truly warped.)

Enough for now. Kath- ( you know what? For years the Kepkes have written Kathryn as K1 and Karen as K2 and when it comes to typing, that makes sense. I have yet to type ‘Kathryn’ without screwing it up. From now on she is K1. How’s that work for ya? Really? Tough. I’m doing it anyway.) K1 is taking a nap.

Talk to you later!

Tom

Thursday late night-evening

2005-11-18T05:41:00.000-08:00

Hey everyone. My first night with Karen was a challenge for me. I tried my best to get used to all of the hums, churns, and bell sounds to get some sleep. I finally was successful around 3 am. I dozed until then. I did much better when Karen was asleep –evidenced by a little snoring. The only time I like to hear that sound. Karen had her best night so far. She was able to get to sleep for an hour at a time on average. A big step compared to previous nights. The unfortunate always happens. She is not awake to push the pain medication, then wakes up with pain then it takes 45 minutes to an hour to get back to sleep. We were able to turn her on her right side in the middle of the night and that gave her her longest sleep (1 ½ hours) We were awakened by beeping sounds from the pain distributor. I ran to the nurse’s station, because Karen was not awake yet- hoping to get the thing to shut up quick. By the time I got back she was awake –darn! Sigh – it doesn’t seem to get better. Her nausea was much better. No complaints for that at all. Her main complaints were not new. The left chest tube was the worst culprit. Her throat the next. Only one gas complaint. We still don’t have “passage” yet, so we hope to accomplish that goal today by walking. She kept thanking me for being there and commented on how wonderful I was. I got fairly slap happy and got the giggles around 1 am. Unfortunately, Karen got them too and that was her only complaint about my care!! I am not suppose to make her laugh.

More gas pains this morning. The PICC is a go. They have changed her over to it this morning. The central line will be out “sometime” this afternoon. They like to use that phrase a lot it seems to me "sometime". No tubes out today. They are still too productive. We should see Dr. Sugarbaker around 9:30-10:00am today. I will stay here until he arrives, then go to the room to take a nap.

I now must seek food.

See ya!

Kathryn

Thursday Evening Late Edition

2005-11-17T19:32:00.000-08:00

November 17 Evening

What a day we have had here. After a crappy night of monumental proportion, today has been downright enjoyable and you know, I am glad to say that. I have not reviewed what Kathryn has been posting so please forgive my overlap if that is the case. She is new to the posting deal but I am sure she will hit her stride shortly.

As many of you know, I will be leaving DC on Saturday morning bound for Palm Springs to see the guys. The plan right now is for me to be home until Wednesday the 30th when I will come back here and stay until Karen comes home. I will blog from home but it will fall to Kathryn to report the good stuff so I ask you to be as gracious to our newest staff blogger as you have been to Mark and me.

Tonight a lady came to put in the PICC line (formerly reported as an IPP line – acronym unknown on that one!) The PICC is going to replace the central line in her neck as the central lines have a propensity to get infected and the PICC is much neater, apparently. The catheter actually ends up in about the same place as the central line, but it is run through her veins from her arm and across her chest. It was a little surgery with gowns, masks, hats and the whole shebang. It took about 30 minutes to complete and was interesting to watch. It started with numbing the area on her are where the line was to enter, and then using an ultrasound machine to observe the vein inside. Once isolated, she put in a large needle thing with a tube and then fed the catheter inside that needle into her vein. The little catheter was pushed into the veins and it was hoped that it followed the right path to where it needed to be. There are lots of side veins that can interfere with the path of the catheter, and on the initial installation the catheter took a northerly turn and headed up towards her ear. She could hear it in her ear moving around, and when the tech flushed the line with saline Karen said that it sounded like a stream was in her ear. So the tech put a high pressure flush into the line and basically pushed the catheter back to where it should be. Then X ray came and it should verify that the placement is good, and then the IVs will be moved from the central to the PICC.

Walking was fun, and she covered a good 50 feet at 6” per step. It was a great start and although a tremendous effort at the time, it seems to have energized her somewhat. Tomorrow she will walk at least 3 times and that should really get the intestines moving around and hopefully launch several air biscuits.

I am off to the hotel for laundry duty and to sleep in the bed. I hope that Kathryn has a good night. And for those of you wondering what a “poor mad sandwich” is, you may know it as a Poor Boy. That’s Kathryn’s special east coast interpretation. Good Stuff!

Later, all!

Tom

Thursday evening

2005-11-17T17:30:00.000-08:00

We have had an eventful afternoon. -all good! After a long awaited "bath" Karen sat in a chair She was told she had to walk before she was allowed to go back to bed. They never gave us a time frame for that - which frustrated Karen (and me as well) who was tired of sitting after 1 1/2 hours. She also was told to do her breathing treatment every 1/2 hour with 10 inhales with teh goal of reaching 1000 (Mark , I put that in for you!) while in the chair. THe whole time in the chair was without oxygen. She dozed in and out. She was able to accomplish her breathing goal about 50% of the time. After a 2 hour sit she then got to walk. This proved to be quite a process of pinning the JP tubes to the gown, getting the chest tube drain portable (I got to carry that), and getting a gown on her back (no mooning). She found walking extremely exhausting adn a lot harder than anticipated. Her goal was to get to the "atrium:" just outside her room to look at the fish tank. SHe got as far as -a normal persons -two steps outside her room and had to turn around. Nausea and exhaustion won over. She was really not happy she didn't reach to goal and stated " I would have done better if I wasn't so drugged up". I can see she will be motivated tomorrow. THe goal is to have her walk three times tomorrow and eventually sit in the atrium for awhile. NO promises about further tube removals yet. HEr pulse ox was so good after the walk- in the 90's they decided she won't need the oxygen anymore until bedtime.

Unfortunately, the gas is still and issue and no "passage" has occured even after the walk and long sit. We really hope it happens before bedtime so she can have a good night. It seems the pain is not as frequent, and Karen is not pushing her pain button as much either. Both Tom and I agree she is seems more comfortable with everything today. - even willing to have us leave her alone to get lunch for awhile.

She is currently getting her IPP - which is another -more comfortable way to receive meds, food, fluid, etc. I was kicked out of the room since only one of us was permitted to be with Karen and it is a 45 minute process. She seemed nervous about this procedure.

I hope to meet Dr. Sugarbaker tomorrow. I understand that Fridays are a "teaching" day in which he goes over cases with students and visiting doctors, and they come around and meet the patients . I really want to be there when he comes to Karens room. WE will make it happen.

WE were visited again by Tom's uncle and aunt and I appreciated their food and lovely sense of humor. It must be genetic! I had a poor mad sandwich with shrimp. It was very good and very filling!

That is it for now.
Catch you later...
Kathryn

tube report

2005-11-17T12:32:00.000-08:00

Good news:
The gas pain seems to have subsided for awhile. Karen got her right chest tube out and her #3 JP tube out at 9:30 this morning. This whole process allowed her to get extra pain meds - this made her happy and sleepy. She tolerated the process well, and felt much better once the chest tube was out. She said she was so comfortable she was afraid to move. She also commented on the doctors through out the process. She asked the first doctor is he was married because his eyes were such a pretty green (she did clarify the fact that she was married as well) She then asked if I thought the resident had nice curly hair. I agreed. The doctors got a kick out of it. Jane the nurse said she was distracting herself, but I know the truth. She wasn't voted most flirtacious in high school for nothing! The sun finally came out after an evening of heavy rain in which I had to walk in and tolerate a 2 hour shuttle ride. I was very glad I wasn't driving . There Sure are crazy drivers here. I lost count as to how many care horns blared at us and how many our driver adminstered himself. Karen rested a lot this morning _YEAH. She managed to watch an entire movie at lunch. She is expected to walk later this afternoon. Tom went back to the room to crash. He came back around 2 pm.

Not much else. Now that I know how to post a blog properly you should hear from me more often.
Kathryn

November 17 Morning Edition

2005-11-17T05:38:00.000-08:00

Did you get some sleep? Good.

I think that there must be some kind of rule that you can’t have two good nights in a row. After the cramping/gas/belly pain last night subsided at about 1:00AM or so we settled down to wait for the Xray. We waited and waited and I checked with the nurses who said that since Karen was now resting comfortably that they had changed the status of the request from Stat( urgent) to WWGT ( Whenever We Get There) . This caused some some sincere pissing off on my part. We hadn’t seen a doctor or the nurse since the order was placed, and now nobody knew when the Xray was showing up. What, I demanded, was a STAT if it could be changed???? The nurse who is on this ward tonight is basically by herself and stretched very thin but dang! So we sat and waited until 2:00AM or so and I figured that there was one sure way to make the Xray dude show up, and that was to get Karen really comfy, turn out the lights, and try to get some rest. We went through the ritual of pillows, ice, blankets, socks, and positioning for Karen and then I eased over the little couch and settled in.

Sure enough, soon down the hall came the sound of Xray dude and his sidekick The General (Electric). In came he and we had to wake Karen and jamb a nice, cold plate down behind her back for an Xray. Hoo boy I was in a good mood then I can tell you. After he left, Karen decided that she wanted to lay in a position on her side so we went through all of the ritual to set that up. After placing her there I turned down the lights and crushed the little couch. I had pulled the little blankey over my chest and was dozing off when I heard the call: “Tom” It had lasted 12 minutes. So we removed the blankets, pillows, etc, and replaced her on her back with a little tilt up for her head. By 3:00AM we were quiet and dark and wondering where the doctor was. The cramping thing was gone by now for some time but still . . .

The resting bliss lasted until 4:45 when Karen awoke from some kind of doze to find her throat hurting her. The NG tube is rubbing her throat raw and there is very little that can be done about it. So it was catch up with the pain meds again.

Then, without warning at 5:30AM the cramps started again. Just like before. At about that time the same doctor that we had not seen all night shows up and says, “Are you still having pain?” Duh! That guy left, and I don’t miss him at all.

So this morning the usual team showed up and reviewed the Xrays and have good news. They saw some air in the bowels and say that it is normal, and that the bowels are indeed waking up. It looks like it’s a big gas bubble. Gas! That’s actually great news and several things should happen today:

- The Gas should find an exit, and she will feel better immediately when that happens
- The Central Line is coming out, and the PICC line is going in.. That will be more comfortable.
- The right chest tube may come out! It has been underproducing and therefore it’s job is being outsourced. Too Bad!

The better news is that things are right on track for the bowels to wake up, and when that happens we get gas, and then when the bowels actually start to produce some . . .items, the NG tube will come out. That will be a great thing.

So after a hellish night we are in the daylight again, and the news is good. This kind of harkens back to the words of that great philosopher, Rafiki, who said, “ Ahhh. Change is good, but sometimes it can hurt.”

Today there is some sitting in her future, and some small walking steps.

Thanks for all of your prayer last night, and it has worked fine. The immediacy of the pain was a scary thing.

Pray for some nice toots. Dan has prayed for pee with us before, and that worked!

Kathryn bounced in this morning all dressed up in a nice sweater, jeans, pretty hair and earrings. I must have looked at her like she was from Mars and I said, ‘ Look at you all dressed up!’ She smiled and said that she will be in sweats in no time. I should have brought a suit. Talk about underdressed.

And this just in – We know how we got the killer suite! We finally met Jane, the nurse who Tim Pierce, or friend and former Sugarbaker associate told us about. She has been gone for the week and this is her first day back. Well she charged into the room this morning and laid out a great plan for the day. It is going to be a good one. And then she said, “do you like the room?” Turns out she was calling and calling and calling last Thursday and Friday to get it set up for us, and it sounds to my weary ears like she may have pushed a few extra buttons to keep us in ICU a little longer until this room came up. Way to go Jane!!!! It’s who you know, isn’t it?

Enough already. I’m pooped. ( get it? ) And a bit slap happy. I’m going to sleep on a bed for several hours. And when I wake up, things will have progressed.

***yawn***,

Tom

Things are calming down 1:07AM

2005-11-16T22:10:00.000-08:00

Well, it has been an hour and we still have not seen the Xray guy. The great news is that the bloat and pain that Karen has been feeling has been moving and has now subsided. could this actually be a sign that her bowels are waking up earlier than hoped? We don't yet know, but what we do know is that the bloat that she felt is gone, and the 'gassy' feeling has been migrating around. Does not sound like a blockage to me. It sounds like a new gas bubble looking for an exit sign. So she is quite comfortable and wanted me to let all know that things are good. I am still hunting down the Xray because I want to see what is happening in there, but Karen feels fine for now. Your prayers worked!

So go to bed.

We'll catch you up in the morning.

Tom

PRAYER ALERT: LET'S CRANK IT UP

2005-11-16T21:06:00.000-08:00

Tonight at about 11:30 Karen started having sever pain and spasming in her lower belly area. This got worse and worse and we called the surgeon on duty. He listened to her belly and says that he can hear the bowels doing something, but there should not be pain and there is some distension that he can feel. He has ordered Xrays of her belly right away to see if we can find out what is happening. This is hurting her pretty badly. There is tension amongst the staff. Please pray for:

- Pain to reduce
-That this is not a bowel obstruction. Serious implications there.
- Guidance to the docs, as none of our regulars on here tonight.

Thanks

Tom

Kathryn Has Arrived!

2005-11-16T17:40:00.000-08:00

After an interesting trip through DC in the rain, Kathryn had arrived. She is now under Karen's grip in the room.

That is all.

Tom

November 16 Afternoon Edition

2005-11-16T12:58:00.000-08:00

I am so very glad to report to you that there is not a great deal to report. I have seen a subtle change in Karen today that I believe is a bit of a plus. Everything that they do here as far as pain is rated on a one to ten scale, and until today Karen has been at 7 and 8 depending on when you ask her and what she is doing at that moment. Today, for the first time, she declared that for a brief time it may have been a five. Her two most common statements are still either, “I am in pain” or “ I am nauseous.” If she is in pain we either move her around a bit and try to find a better position, or make sure that she has hit her happy button for more meds. If it’s nausea, then I pull on the gloves and go to work backflushing her NG tube, and then reconnecting the tube to the vacuum source. It’s amazing how quickly the removal of a small amount of bile (ick) can reduce nausea. But the difference I see is her mood. When she was conscious enough to ask for things, she tended to bark out what she wanted (if we were lucky) or make hand gestures that we were required to interpret post haste. There were not a lot of wasted manners in her commands because her sense of urgency, heightened by pain everywhere, made those words to costly to say. Later when things calmed she would thank all of us for our help.

Now she has the resources to say a little bit more about what she wants, although I am still amused by how the meds affect her mind. Several times she will start with a, “ get me those . . . . “ and I will stand there on my toes waiting to get the thing in question. And I will wait for 15, 20, 30 seconds and then finally ask her what she wanted and it is gone. I get a blank look.

The meds still do not let her sleep for very long, and I find that frustrating. One thing that she needs most is sleep and yet the very drugs to allow her to heal also keep her awake. But another sign of improvement is that if I am not in her sight for a few minutes it does not send her into a panic as it did a few days ago. She even encouraged me to go and grab a sandwich today and that was a big step in my book.

By this time, Kathryn should be on the ground and on her way to us from Dulles. I think that when she arrives I will become support staff and somewhat superfluous. Once these two get together they will sit and chatter for hours, and I will fill the post of ice-getter and audio/visual technician. That sounds just fine to me, and I think that Kathryn being here will be a big boost to Karen.

This follow up chemo therapy weighs on our minds. It would have been nice to have Karen more prepared to discuss it last night so that we don’t have to think about it for the next few days and quite frankly I had set in my mind that this was the PMP and that we would not have to deal with it anymore beyond the follow up tests. It’s not so much the having to deal with the side affects of the chemo (and that is another unknown) as it is the fact that whatever was in there was scary enough for Dr. S to set us up with this Oncologist in the first place. It’s not a part of the procedure that I had seriously considered and for me, a Fix-It guy, this leaves many items left to fix in the near future beyond what we are currently fixing and – this is the part that I don’t like – I don’t have a plan because I don’t yet know all of the details. I have to have a plan. I MUST have a plan, don’t you know?

Karen’s room is about 100 yards from the heliport and most hours of the day and night we see some up close views of some pretty neat hardware coming in. It also makes me think about the fact that we don’t have it as bad as many do. The immediacy of the life-threatening situation that requires a ride to the hospital in one of those flying ambulances is way more crucial to someone’s family than what we are going through, and hearing the sound of those birds landing and then clawing their way into the sky always causes a bit of a grimace when I think about it. It’s also sobering to see what happens when they land. If the person is still alive and there is a chance, the chopper touches down and the trauma teams are right there before the rotors even slow. If it is more dire, the chopper lands and the rotors slow before the team rushes in and there is a distinctly different level of urgency. It’s a subtle difference, but a life and death difference none the less. So how is your day? Any choppers come today? No? That’s great news.

The mood in this room is lighter. I don’t know if its because we both got some rest last night or that we are settling into a post-chemo routine or exactly what. But now that we have met the staff and know pretty much what happens it is better. All of these little machines and I have reached a level of understanding so that we can communicate adequately. Remember that annoying pulse/oxygen saturation machine that beeped and screamed on the last day of chemo? Since Karen was released from its grip, I thought they would come and get it and take it back to the giant instrument corral that must exist here somewhere but they have not. I pay it no need, and it has become a stand for some flowers and Karen’s DVD player. Ha! Serve me, vile trinket! (and be quiet about it.)

The flowers that you have sent are stunning, and I have the enviable task of finding places for her around the room where Karen can see all of them. Since she cannot see behind where her head rests on the bed, I am unable to use a lot of the table and storage space so I have developed a revolving system where I move them around from time to time so that all flowers have face time with Karen on the rolling tray table at her bed. This works well and keeps things dynamic and she loves them very much. Thanks to all of you!

And check this out! Outside, right now, there is water coming from the sky! The sun is hidden by this huge mass of gray stuff and water is pouring out of it onto everything, not just the grass and plants! I think that someone has a timer problem because this water has been on for a couple of hours now and it is making the streets wet. A valve must be stuck or something. And the interesting thing is that from this room we have a view of a busy 5 way intersection and people are not even crashing into each other. They must highly skilled to be able to drive on wet pavement. Wow.

As we speak Karen is getting ready to sit again. That’s twice today, and requires about 20 minutes of prep time to make the transfer. It’s a tough process and it makes her very nauseous. It’s quite unnerving to see her struggle to stand and hold herself upright in one place for a few seconds as just a couple of weeks ago she was jazzercising. But that will get better.

Tom

Kathryn's on her way

2005-11-16T11:05:00.000-08:00

We managed to get the kids off to school and Kathryn to the airport on time. She's in mid flight as I write. She should land in DC (Dulles) around 3:30 (United #902 for those who want to track it) and expect she'll be at the hospital between 5:00 and 6:00pm depending on baggage claim and traffic.

Traveling with several books, DVD, iPod and a PC, she actually looks like her technologist brother (or husband) traipsing through the airport. She'll get the real fun when she goes through security with all that equipment.

I know she's looking to this trip with an odd combination of anticipation and trepidation, but is looking forward to being able to give Tom a break now that Mark has left.

Tom, on behalf of the outlaws, just let me wish you luck with the twin language thing. I think it will be in hyper-drive this week. You may never understand what they're saying. In fact, I imagine that Kathryn will quickly determine that there are seventeen meanings of smack smack, much like the Eskimos and words for snow.

God bless you, and thanks for all of your postings keeping us up to date.

Mike

November 16 - Kathryn Day!

2005-11-16T07:23:00.000-08:00

November 16, 2005 morning report

Oh happy day. Some good news! Karen had her firs decent night’s sleep last night and although she was awakened by someone every hour or so, she was able to go back to sleep for most of the night and got some rest. This was reflected very much in her mood and I could tell that she felt better by how she interacted with the staff and with me. There was less of an edge on her voice.

Gary the Sugarbaker PA came by last night at about 8:00 and removed tenckhoff catheter last night. That was the tube that delivered chemo directly into the belly cavity and was sewn into her side along with a pair of JP drains. Gary told her that most people don’t feel pain when the tube comes out, but more of a ‘weirdness’. Okay. He started by having to cut the sutures that held it into her side, and then with a long armed motion he pulled the entire thing out. Although he said it was shorter than they used to be it still seemed to me like that tube kept on coming and coming and coming until finally it was out. The look on Karen’s face did not reflect weirdness, however. It was good old pain. Gary seemed confused by that.

Dr. Yoo the medical oncologist came to see us last night at 8:30PM, breezing in during the evening hours just as Dr. S said that he would. He introduced himself and took a look at Karen’s incision, tubes, etc. and was extremely pleased with everything. His purpose was to discuss what was going to need to happen as far as additional chemo after we get home, but he had the good grace to ask Karen if she was up to talking about this right now, and she said that she was not. We made an appointment for Friday night for him to come back and talk.

This is a big day for Karen because Kathryn is arriving today. She gets in late afternoon and once arrived, I will be but hired help. Ahh, the shame of it. Relegated to support staff! That’s OK with me as it will do her spirits good to have Kathryn with her.

This morning the gaggle of docs came in at about 6:00AM and looked Karen over. They huddled and peeked and talked and ask deep questions like, “Are you in pain? Where is your pain? What number is your pain? Are you sleeping?” This is amusing because she is asked these questions it seems hourly by nurses, therapists, and random people who happen to stop in. But again it was an indicator that she is feeling better that she answered with good graces and a smile. Then one of the doctors stepped from the fray and announced that it was time to remove the dressing from her big incision. That looked pretty painful to me but off it came and I am glad to report that there was no sign of infection or seepage from the wound at all. It is a very clean incision laced by black sutures all the way up, and at this rate it is going to heal very quickly. Karen thought that for some reason they were just changing the dressing but the old one went into the trash and soon with an announced, ‘ we are going to let that breathe’ they all moved off and left Karen with a new visual feature to admire. She was fine with that except for the fact that now the sutures seem to catch on everything that she lays across her belly.

A couple of the JPs are not performing (that’s a good thing) and should be coming out in short order. They are numbered 1 – 5 and every day their output is measured very carefully. My bet is that #3 will be the first to go as it is not doing a whole lot.

Today we are going to brush her teeth! You’d think we are going to dinner she is so excited. I am going to head over to the hotel in a few minutes and take a shower and have some breakfast and I will return with the brush!

Karen is sound asleep again (that in itself is so encouraging) so I am going to run off and post this, grab a shower and som fresh clothes, and then some back.

Tube Removal Count: 4 Today's featured tube was the tenckhoff catheter. Goodbye, Tenckhoff, and thanks for playing.

Later!

Tom

November 15 Meeting with Dr. Sugarbaker

2005-11-15T15:42:00.000-08:00

Today at 4:30 Dr. Sugarbaker arrived. I thought that initially he was here for his daily check but he was without his Surgical Posse. Instead, he was here to talk about both the procedural follow up and the pathology.

Well, the pathology today was a big surprise as we had been told very specifically that it would be a minor miracle to have it back by Thursday. Nevertheless it is back and complete. Allow me to launch right into it.

The first big question was concerning the grade of the cancer. Dr. S had believed that it was intermediate PMP( low being best, followed by intermediate, and the worst being aggressive) and he was, for the most part, right. However when he was in her belly for the surgery he changed his thinking a bit, and the pathology now confirms that it is actually a Well Differentiated Mucinous Adenocarcinoma. (That’s a bit worse that regular PMP but well differentiated is good) Karen’s cancer was not low grade as we would have hoped but indeed intermediate but with some pockets of aggressive cancers. Overall this did not concern him because he emphasized that the surgery went as well as is possible, so whatever cancers were in the peritoneal cavity are gone, but the presence of aggressive cancer at all was a surprise and not good news and indicates that the surgery is not the end of this.

What is good news is that he does not see any need for future surgeries at all, BUT he is going to have us see a surgical oncologist, a Dr. Dal Yoo, by the end of this week to discuss what he believes will be a 6 month course of systemic chemo to try to counter any of these more aggressive cancers. We don’t know what the drug will be or how long it will be or how it will affect Karen, but as soon as we have more details we will advise. Needless to say, the prospect of traditional chemo is a real downer but at least we can have it done at home.

Dr. S very much wants to get our Doc at home, Luke Dreisbach, involved in what he has found and of course in administering future chemo and interpreting the cat scans as they are done. He is going to rely on Dr. Luke for his eyes and brain because with 900 surviving patients Dr. S cannot possibly read all of the CT scans that his patients are having.

One of the requirements of his office is that we send him a Christmas Card every year with a brief update about how Karen is. If they do not get a card, they will call us and pester us mercilessly until they learn what is going on. Interesting.

Aside from the CT scans every 6 months, we need to have a Cancer Marker screening done every three months for 5 years. There are several tests that you can do to check for cancer markers including the AFP, the CA 15-3, the CA 19-9, the CA 72-4, the CA 125 (pretty common), and the CEA. For Karen’s type of cancer, the first 5 types are not very useful and we will use the CEA as our guide. Here’s the deal: A healthy woman will have a CEA score of 3.0 or less and Karen’s number on 11/10 before the surgery was 12.8. That’s a big number and now that the cancer has been physically removed they will run the test again before we leave the hospital and then – as I said – every three months after that. Dr. S believes that when we are done with the further chemo (in about a year or so) he number will be at about 1.0. We are to use and track the CEA and if we see any significant trend that will be a red flag.

I found the pathology pretty scary and Karen does not know much about any of this yet and has asked not to know right now, so keep it zipped. There was indeed cancer just about everywhere, and especially the uterus. There were lots of tumors that were as big as 0.7 cm on the uterus, and many more on neighboring areas. Lots of adhesion tumor as well, which made things stick together quite a bit. The lining of the peritoneal cavity was pretty well studded as well. Dr. S sent a total of 10 specimens out for analysis in order that the readings be done separately.

So that’s the story on the pathology. Dr. S is still of the belief that she is going to leave here earlier than expected based on how she is doing. The pain issue is almost universal among his patients and he says that it is par for the course to change meds mid stream and to deal with the sheer discomfort of it all. Since everyone has an opinion of when things will happen as far as tubes, I asked him for the direct scoop. Tonight we lose the chemo catheter and on Thursday the central line comes out and she will then get a little PICC line in one arm to finish up the food, hydration and drug duty. The chest tubes perhaps in the next week, and the JP drains will go one by one as they stop producing chemo extraction. They can vary.

She has been dozing today, and her pain is about a 6 -7. The pain this afternoon is not in her chest (!) but in her lower back and abdomen. She says it sort of feels like cramps from her period, but we know that that is not the case. This pain seems to be the worst yet, and she is not happy about it. This is kind of like labor all of the time, as I remember it except that this is going to last for days instead of hours. Oy!

Gary, the PA for Dr. S, has upped her conitnueous does of Dilaudid for the night so that she can hopefully sleep, and we are slow going to use a heating pad for her back and benadryl if needed for sleep. Oh – and get this. . . she is often too hot and wants it to be cooler! What? I have to check her bracelet often to make sure that this is my Karen. Holy cow!

I pray for some sleep tonight for her and for me, but unless some major changes take place it’s going to be another rough night. It’s like a comedy at times; I perform some task, move her, hold hands, etc. and then wait there until she seems comfy and in place. Then if I move away to pee/sit/type as soon as I sit down she wakes up and needs something. We get that done, I wait and then sit. Voila! Smack smack! Sit. Stand.

She looks and acts like our normal cute Karen when asleep, but when she is awake and having to deal with her pain it’s a lot of non-verbal looks and grunts and she is not happy. I am learning the lingo, however. I’ll get it!

Hope you all are having a great day, and thanks for the flowers and goodies. They have started to arrive and they do cheer her up. It will make the next couple of weeks a little nicer!

She's asleep right now, and I have her permission to post and then grab some food and get my butt back up there ASAP.

Alrighty then.

Tom

November 15 - Mid Afternoon Update

2005-11-15T11:48:00.000-08:00

New Drugs! New Drugs! New Drugs! Finally the paperwork came through at about 9:30 this morning, and they started with the new doses then. It seems to be working and she has been sleeping a lot since then.

Another issue was the imbalance between what she was peeing out and what she was taking in. She was a touch dehydrated which explains why the throat and the chest drains were so painful - the tissues were a bit dry. So she is getting some more hydration through IV (the *smack* * smack* does not really hydrate because it goes into her stomach and right out the NG tube.) the crease on her forehead is pretty calm right now. I hope it lasts.

The chemo from yesterday was drained this morning, and we finally made use of the bag that has been hanging on her side for five days. After about two hours they checked the JPs again and got about 150cc more chemo stuff out. Talked to Gary the PA this morning and the equation for removal of chest tubes is Clear chest X ray + no more than 100cc per 24 hours drainage from the tubes. The X ray is good right now but we are still at about 500cc on the left and 300 on the right per 24 hours. A few days left, I would say.

Mark is gone. He left for home this afternoon, and now it is we two. It's kind of scary because now if I am anywhere from visiting the sandbox to grabbing some food Karen is alone and she is not good with that yet. she requires (when awake, of course) lots of smacksmack, tissues, straws, hand holding, etc and gets very agitated if someone is not there right away. I can understand that and am just sad for those other patients on the floor who are doing this with only the nursing staff for support. It would be hell, I think.

Great news! After 5 days, 6 requests, and 9 hours we got a lightbulb! Yes, we now have a bulb to go with our table lamp! And I scored a spare as well! Now that's living!

There is some big todo outside the window this afternoon with police cars, ambulances, and lots of people standing in clumps talking. Don't know who did what but hey, that's DC!

I have no tube count update but rumor has it that we will be removing the catheter from the chemo today, so we can add another to our count. Stay Tuned!

Kathryn arrives tomorrow late afternoon, so soon you will have another blogger.

Talk to you soon!

Tom

Late Edition - FINAL

2005-11-15T05:40:00.000-08:00

November 15 Morning Edition

Well, it did not end up being the machines that got Karen up this morning, it was her throat again. The throat is just taking over the pain situation and Gretchen came in at about 5 and did her best to make Karen comfortable by propping her up on her side a bit, and moving some pillows around. She also called the doctors on duty to come and address her pain issues.

They all showed up at about 5:30 pm, none of them docs that I had seen before. They had a long discussion and asked if she felt drugged up since she was on such a high dose of pain meds right now. She said she did feel drugged up, but she also felt severe pain from both sides of her chest, her lungs, and her throat. Even this higher dose is doing a marginal job of keeping up with the pain. It’s a nasty cycle:

Karen wakes from a doze or nap in great pain, and is able to push her meds button every 6 minutes if need be
Meds gain a foothold on pain
Karen gets drowsy
Karen is still able to push her med button, but maybe only every 15 minutes or so. That’s enough to keep up with the pain, but not ahead of it
Karen falls asleep
Machine maintains standard dose, but Karen is asleep and does not push button
Dosage falls behind
Repeat #1

Every time she goes through this cycle she gets more and more tired, and more and more frustrated. I know that she expected this night to be better than the last, and it has been by far the worst.

At any rate, the doctors are going to change out her meds to a drug that is more potent for pain but will not make her as groggy. It will take a few hours for this order to pass through the pharmacy. In my mid-night haze I did not capture the name of this new drug but when it arrives, I’ll report it.

So after they left, I put Karen back down on the bed with her pig pillow under her head, and we started the process again. She fell asleep at about 6:30. And for the first time, I am cheating. The rule says that only the patient can push the button for extra meds to make them feel better because they can get constipated or too groggy from pushing the button too much. (The machine will beep at you every time you push the button, but it will only actually administer a dose every 6 minutes to prevent over dosing.) I can dig it, and I can even get behind it but this morning for the last hour and a half I have been a drug pusher. Yes, it’s true. I have made sure that while Karen sleeps soundly that she gets her extra meds every 10 minutes or so, and she is sleeping soundly for the first time in the last 15 hours. I can tell this by her deep breaths and the lack of that concerned little crease between her eyes when she is in pain. I figure that a few hours of this is going to help her sleep until the new meds arrive. Total justification, isn’t it? Don’t tell anybody, OK? This is just between us.

Other than that, the night was . . . pretty crappy. But now the light is up (not the sun because for the first time that I have noticed since last week it is gray and overcast)

I finally developed a way to sleep on the couch which seems to work reasonably well, and for that I am grateful. I am sure that I look kind of like I am attempting to put out a fire on a lawn chair as I sleep with arms, legs and blankets thrown askew over myself but it works for an hour here and there.

Mindy is back this morning, and says that today is Karen’s plan. The only thing that has to happen on a schedule is to have yesterday’s chemo taken out around 11. Shoot, that may make her feel better right there.

Mark is heading out after lunch, so I am going back to the hotel to grab some breakfast, a nap, and a shower. And of course, post to the blog.

And hey! We are going to lose at least one tube today. Gravy.

Tom

November 14 Late Night Edition

2005-11-15T00:51:00.000-08:00

November 15 Late Night edition 3:30AM

The good news: Chemo is Over!

The not so good news: After the most exhausting day yet, Karen is having about her worst night yet as well. It seemed that she would fall asleep nicely after we wrapped up her final chemo treatment at 8:00PM and she did doze for a while. Mark ordered in Chinese and he and I celebrated the completion of the process with dinner and a showing of ‘Office Space’ just down the hall from Karen’s room in the lounge. That lasted for about an hour before the night nurse, Edith, stepped out and told us she was awake and asking for us. So ended our celebratory feast.

Tonight the culprit has been not only her sides, but her throat. When she swallows, the tube in her throat must just be raw and she cringes with her whole body. She dozed fitfully until about 1:00AM when she decided to talk to the nurse, Gretchen, about more meds. The resident (argh) showed up but we soon convinced him that more meds were needed and he upped the dose to a flat 60mg/hour (up from 40/hr) with a 30mg boost from the button every 6 minutes. After she calmed down and the meds got in her system, she dozed off at about 1:30AM and I contorted onto the little couch.

At 2:50 the alarm went off that the machine was out of pain meds. I scooted down to the nurses station and found Gretchen, who responded immediately but I could not be there and keep this machine quiet enough with the ‘silence’ button to let Karen sleep. She was back up and now noticed that the pain meds had stopped and her throat hurt worse than ever. So Gretchen reloaded the pain med, purged the line, and we started again. This also required more ice chips, chap stick, and hand holding along the way to move the process along for her.

Hand holding is a big thing for her, and I was warned by my friend Dennis Madsen that this would be so. I have never had an experience in the hospital where I felt that I needed to be holding a hand all of the time, but here we are. It’s a comfort thing and whenever she’s awake and you are near (which is 99.9% of the time) Karen really wants her hand held. It’s even better if there is someone to hold both hands at once, although she does recognize that this impedes her ability to push the pain button every 6 minutes. And with the handholding comes the real-time pain measurement as she passes along just how much it hurts by squeezing. Now I am a big guy and my hands are a good twice the size of Karen’s but in the last couple of days she has squeezed them so hard that both of my hands are a little bit sore right around the base of the fingers where her hands are when our fingers intertwine. There have been times when I have actually had to sort of counter her squeezing by repositioning my fingers. She is strong, and it must hurt a lot. So like Mark said in his fledgling advocacy notes, hold a hand. It seems to be important.

The NG tube is talking tonight, and for a while it was playing a little tune that sounded like the AFLAC duck was in her nose. It was funny and annoying at the same time but Karen was right – it did sound like the duck. AFLAC! AFLAC! Earlier tonight it was making a noise that sounded like schoolchildren playing and happily yelling on a playground. A strange thing to hear.

Mark is heading home in the morning, and he is fast asleep getting a well deserved night of sleep at the hotel. It’s been great having him here and his help has been invaluable. I will miss him very much but more for the camaraderie than even for the help. Strange how some events in life can create and grow a bond between family that you’d never expect. We will be quoting Office Space and talking about NG tubes and The Frau for years to come, and not even Karen will remember most of these times. After all, how many guys have had the chance to bond over a radical chemotherapy treatment?

There you go.

Well, I am going to post this and then try to catch another hour or so of doze before the next machine starts to bleat. It's 3:46 so there is still a bit of night left!

Later. Much later.

Tom

Thanks

2005-11-14T19:40:00.000-08:00

Thanks to Tom and Mark for keeping us all posted. Your humor and the details you provide are amazing. You both blow me away with your dedication, and your diligence in learning everything you need to, to become Karen's best advocate and care givers. I am so proud of you, and I am eternally gratefull you are able to be by her side. Mark, it truelly helps me to deal with all of this knowing you are with Tom for support and with our sister for anything she needs. Please know that my health is well. I know you both have done your very best for her. We pray for all of you for continued strength.

I can't wait to meet everyone and learn as much as I can. I have printed Mark' s advocacy and night shift report and will study it on the plane. Tell Karen that I too will bring scented lotion - then she gets to choose!!
I can't wait to get there...

Love to all,

Kathryn

November 14 - The Last Day of Chemo

2005-11-14T15:14:00.000-08:00

November 14

Here I sit on the couch next to our lamp with no bulb. It has never worked, and we have contacted 'engineering' to procure a bulb but it may take 6 - 8 weeks for delivery, so we sit in the dark and wait. Sure, we have the skill to change the bulb but what fun would that be? We just want to see who comes through first with some light. Call us a little slap happy, but it is amusing.

Today is a good day. Perhaps it is the fact that this is the last day of chemo, or the fact that Mark and I are finally confident in our skills and procedures, but it feels like a good one.

Mark spent last night again in the room with Karen ( honest, he volunteered.) and the night went well. The NG tube got clogged a couple of times apparently and that may or may not have contributed to the nausea issue. Whatever it was, Mark handled it and she had a pretty good night overall. I think it is funny how they want patients to sleep and rest (blah blah blah) and then we get her all comfortable and snug and asleep and some bozo shows up to take her blood pressure. Blood pressure?!? She has machines hooked to her that know the concentration of oxygen in her blood, her heart rhythms (that little machine transmits through a complete wireless network all through the hospital) one that feeds her through a tube, hydrates her through a tube, empties her stomach, and calculates the volume of stuff coming out of the drains in her chest. I would not be surprised if there was a GPS transponder in there somewhere. There is even some little infernal machine that they just brought in that sits next to her on a side table and beeps out her heart rate. ( It reminds me of the worthless ‘machine that goes *PING*’ from Monty Python) But can they tell her pulse like this? Apparently not! I would think that by using geometry, calculus, curvature of the earth or something that they could extrapolate that information from the other streams that they have but Nooooooooo. It’s a conspiracy! Sounds like a government program indeed. That is this person’s job, to wheel around this little cart equipped with an semi-automatic blood pressure machine. Strap it on, push the button and wait for it to tell this vital information. It slays me.

Went to visit Frau Ilsa today and touch base with things. If I had not mentioned it before, she is a sweetheart. She asked about Karen how we were doing and if we were comfortable in our little room sleeping on a cot. “Little room?” I asked, “ we are in 2NW13 don’t you know and there is a couch in there!”

“ Vell, how deed you get into there? Deed you reqwvest that room? You and Karen must be verrry special to have that one. The last patient that I remember having that room vas a congressman, and he liked it a lot. Did someone ask for you?”

“Nein,” said I, “ I think it is just good clean living.”

She seemed to agree with that, and indicated that she was going to come a-visiting on Thursday after Kathryn arrives. We will see.

As we were told to expect, today Karen is much more tired than the last few days. She gets frustrated with that because she is not as strong as she wants to be and also because her mind is very foggy. It’s hard for her to stay awake for very long, and when she is awake it is more of a daze than anything else. The chemo has a cumulative effect on the body and the mind is part of that. In addition, nausea continues to rear its ugly head quite often and when the cleaning of the NG does not work, she gets the Zofran for nausea, and that makes her even more fuzzy. So she drifts from doze to doze and it’s hard to know when she is really asleep and when she is just drifting. A dose of a pepto-bismol kind of stuff is given to her several times a day as well, and administered through the stomach tube to coat and prevent ulcers since there is not any food in there to absorb all of the stomach acid produced. That is all fine and good but it also means that we have to disconnect the stomach tube for 30 minutes so that the medicine does not simply come right out of the NG tube. That tends to make her nauseous as well. So you can see that in this game most things lead to nausea and Karen wins the game when she does not try to throw up. She has not lost the game and we don’t plan to let her lose it because I can’t imagine the pain if she were to wretch in her current condition. I don’t know how much the drugs would help and I think that pain would be tremendous. So we won’t let that happen. We have learned how to work the NG to maximize extraction and how many spoonfuls of ice chips to give her to keep things moving. Today for the first time we saw some red moving out of the NG which is expected, because having that tube laying down in her stomach for days on end is very irritating. We live to watch that tube, though. When it flows well, all is well. When nothing is moving, there is trouble afoot.

And oh how she hates to lay on her right side. We don’t know why, but something about the way the chest tube is on the right side is painful. We have tried pillow position, sheets, placement, and body angle but eventually the right side gets very painful. We refer to the right side as ‘the dark side’, which may amuse some of our more liberal readers out there. But the good news is that as soon as we roll her to the left, she lets out a sigh and drifts off to sleep. We wish we could have figured that one out to get rid of the pain. But it is almost over now.

One highlight of Karen’s day is her morning bath. The nurses come in at about 10:00AM and give her a complete sponge bath. Part of her ritual is also to have a complete rubdown with some lotion that Ginny Wells brought. It smells like oranges, and makes Karen really happy. After that she gets a fresh gown and then a trip to the chair next to the bed for some sitting. It’s good to see her sit, and for now that is the first real milestone that she has physically reached. After the chest tubes are out, it’s time to walk. I hope I am here for that.

I think that just about all of the excess fluid is gone from her body with the exception of her feet and her lower back just above her bottom. I have to wonder though if that is not some internal swelling as well as a result of the trauma to her insides in that neighborhood. But she looks mostly like Karen again.

I don’t know if we have yet mentioned the lung exerciser, but it is a little gadget that looks like what certain of the ‘less savory’ types might have purchased at a Head Shop back in the 70’s. It’s a funky looking clear funnel sitting on a base, and out of it pokes a flexible tube with a mouthpiece on it. It’s purpose is to work the lungs and require the patient to open the little air sacks inside to inflate and fight pneumonia. Karen is to inhale deeply from it ten times per hour during the day and every four hours at night. It’s kind of like a game in that you don’t just inhale through the tube, but you have to maintain a certain flow and cause a little ball to float in space between two lines. Toke it up too fast, and the machine bypasses and you fail the test. Go too slow and you run out of breath before you even get the main meter to register your lung capacity. Hence, it requires a slow intake of air through the tube while focusing on the appliance itself. Mark and I have dubbed it the Air Bong. The air bong is actually a funny little gadget and we find it quite amusing to shout “where’s the Air Bong? Karen needs a hit!” across the room. Mark and I even have an extra one at the hotel, with which we have competed to see who has the best lung capacity according to the Bong Chart that came with it. Funny thing is, when you do it right you tend to hyperventilate a bit and it does give you a light head and a bit of dizziness. We are amused.

Her ice chip intake is up exponentially today. There is not a lot of verbal requesting going on, but rather a smacking of the lips with a bit of tongue. This is done twice in a row and is translated, ‘get thee over here and get me some ice NOW.’ So now we have picked up this verbiage and have employed it in such sentences as these:

“ Hey Tom, I am going to the cafeteria. May I procure you a beverage?”
“Why yes, Mark. Please gather me a large Coca Cola with a big cup of *smak smak*”

“ Wow, this room is as cold as *smak smak*”

“ What’s that noise? Oh! Karen needs some *smak smak*”

We think that by not actually saying the words “ice chips” that we are saving .0000532 seconds of valuable communications time. Up next: Interpreting ‘Mmmmph!’ into a usable lexicon.

We are now only a couple of hours away from finishing chemo. Karen is really tired and everything seems to be achy now. Her shoulders remain sore from the surgery itself as we have learned that her arms were pulled above her head for the duration of the procedure to give best access to her belly. You’ve probably all used a muscle funny and then felt it the worst a few days later. You can never get comfy.

So tomorrow we start to heal. The JP drains will stay on for another day or two but we are done with the chemo and hopefully have killed all of those PMP cells. Good riddance. I look forward to the next couple of weeks because once Karen gets her strength back she will start feeling better every day. And then – Home

By the way, I have gotten a lot of emails as to whether or not Karen can receive flowers and the answer is yes. Send them to Washington Hospital Center ( click on the link to the right) to Karen in room 2NW13.

Thanks again for all of your emails of support. I read each and every one to Karen as I get them through the day, so if you want to get her a message that is the way to do it. (that address is tpendleton@dc.rr.com ) I can also show any pictures that you would like her to see, so email them on!

Stay tuned! It’s going to get better from here . . .

Tube removal count: 3 We had no tubes removed today.