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.

Monday, March 27, 2006

Feeling pretty good!

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

Friday, March 17, 2006

Hi everyone!

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

Tuesday, March 07, 2006

Settling in, sort of

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

Sunday, March 05, 2006

Back on the Blog!

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