Karen's Page

Welcome to Karen's Page, a web page intended to keep Karen's family and friends informed about her cancer. Karen, age 40, has a rare form of cancer called Pseudomyxoma Peritonei. She and her husband Tom have 2 children ages 4 and 7.

Tuesday, June 27, 2006

Chemotherapy Is Over. Film at 11

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

Monday, June 19, 2006

Chemo #11

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

Monday, June 05, 2006

Chemo #10

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