Sunday, January 25, 2009

Ready for transplant

That's me doing another couple of miles around the floor. The floor is shaped like the letter "A" and it takes 10.5 laps to complete a mile, including the little ends of the "A", so there's a little bit of back-tracking. There are emergency exits at each end, and Johanna and I are in the habit of kicking the door-jam before turning around. My sister thinks this is cute.

Today's day of rest went ok. It's not really a day of rest, it's more like a day to let the chemotherapy toxins finish draining from your body. Literally. I did a lot of peeing in these last 6 days. Just a few days ago I weighed 180 pounds and am now back down to 165. Most of it was from fluids, which they kept me heavily pumped up on during the chemotherapy. I think the infusion rate was 240ml/hr, which is about 1 1/2 gallons of fluid a day, not including the water I was drinking myself or from meals. I am also on a variety of other drugs, in both pill and IV form. One is a drug to ward off potential seizures that could occur from the Busulfan, one of the chemotherapy drugs. Another drug reduces the chance of GVHD (graft-vs-host disease), which I'll be on for a while even after I leave the hospital. Another drug helps protect your bladder, since the breakdown of one of the chemotherapy drugs can cause bleeding in there. There are drugs to protect your liver, and drugs to fight my not-quite-gone fungal infection. It's no fun being hooked up to the IV pump or taking a dozen pills a day, but it helps to know why they're there. One of the nurses left a fat reference manual called the "Drug Guide for Nurses". I haven't looked at it much, but it's nice to have since it can be hard to remember why you're taking that one particular drug with the funny name.

Today we put a new dressing on my Hickman catheter. The dressing is really just a square piece of sterile sticky tape that covers the entry point. They rip off the old tape (fun), sterilize the area, then put new tape down. It doesn't sting as much as the PICC line for some reason. Up until a few days ago the dressing included a round patch called a bio-patch, which covered the entry point and protected it from bacteria. Now they've switched to a different kind of patch that is supposedly better, and this one has clear goop instead of the bio-patch, so now you can see the entrance wound and suture in all its glory :) It's kind of cool, and makes a better impression when showing it off to people. I feel more like Iron Man now.

My dad hung out for a while and we talked on the phone with my aunt, uncle and cousin. My sister and Brian came over again and we watched more of Monk, then chatted with Joe who stopped by as well. Ryan and Joanna stopped by with their baby and I showed them all the decorations in my room. Johanna and I fiddled around with the video chat more since she's still at home with a cold, and my dad even got my mom up to speed on the video chat at their apartment. All in all it was a busy day!

I think I'm ready for tomorrow, but I'm not really sure what to be ready for. For example, I was expecting to feel awful by now, but I don't really feel that bad, relatively speaking. In fact, I ate the most food I've eaten in a day since I got here: a bowl of cereal for breakfast, cheeseburger and potatoes for lunch, chicken noodle soup, grilled cheese sandwich and pretzels for dinner. And right now I am absolutely craving crunchy tacos. At this point in my induction chemo, I was lucky to get down a few pieces of Cheerios since I was experiencing the full-on hell of mucositis and watching the insides of my mouth slough out.

I guess I'm a little worried that if I'm not feeling absolutely terrible, then the chemo drugs must not be working to their full effect, which might cause the donor's blood not to engraft as well. In fact, I've been watching my counts for the last 6 days, and they haven't really dropped very far at all. They're all still way above what my "normal" levels had been like for the last 6 months. But the doctors and nurses say not to worry, that they see this all the time, and that we're just seeing the lingering effects of blood cells that haven't died off yet. It'll take the new blood about 2-3 weeks to engraft and that I should expect the old blood counts to bottom out about 3-4 days after the transplant.

They also say to expect things to get worse, since mucositis usually doesn't surface until around day 3 after the transplant and I might not be able to eat food during it. I've been brushing my teeth and using the special mouthwash constantly, so hopefully it won't be as bad as last time. I was on IV nutrition for weeks last time, and while it was good to have as a backup plan, it was annoying sometimes and hard to get weaned off of, since you were never really hungry and you couldn't just quit it cold turkey, they had to cycle you off of it. IV nutrition can also be a source of infection since it's a breeding ground for bacteria, so if I can keep off it this time, that would be great. I'll also be taking just enough immuno-suppressive drugs to prevent my old blood from fighting off the new blood, but not enough to keep the new blood from beating out the old blood and leukemia cells.

It all seems like such a delicate balancing act. All I can really do is keep my body prepared and hope for the best really.

Cross your fingers!

10 comments:

MW said...

Steve keep on keepin on! Just wanted you to know that your DC support team is thinking of you, and sending you good vibes

Trevor said...

Looking good, Steve! This is your chance to show that MDS who's boss. I've got a good feeling about these stem cells you're gonna get - even if they have two X chromosomes ...
(And FYI, I'm doing a hematology rotation this month, and I've done a bunch of bone marrow biopsies. And every time I do one, I think about your hematologist and how he sings "I Wanna Be Sedated" to you. It's a great idea, but I also wanted to do something original, so I usually sing "Baby Got Back" instead. It totally makes sense, especially here in Wisconsin where the people tend to be a little stockier ...)

George said...

This is it men...

I'm so excited. Yet I still think the mucositis sounds like the worst part. So gross.

Thanks for the updates from Cindy and Johanna. I loved the web pics of you guys chatting on line.

Walking 2 miles is a great achievement. And I don't know about you, but every day I struggle with just getting my butt out of bed. It's an achievement in itself. :)

appointedtime said...

We've been praying constantly - for you, your family, the doctors and nurses, and your donor.
Keep up the good spirits - I've been really impressed and inspired by your positive outlook!

appointedtime said...

-Becky

Kristin said...

Hi Steve. Chad and I will be thinking about you today and sending the strongest, healthiest brainwaves we can in your direction.

erin said...

Good luck! I'm sending positive vibes and prayers your way and to all the Riders and the Reehs who are there supporting you.

Farookh said...

you look strong, steve! time to finish off the little buggers...good luck!

Robin T said...

I'm so impressed by your strength, courage and optimism! This is it! Good luck. There are lots of people rooting for you and sending you good vibes.

sureshk said...

Good luck Steve, our thoughts are with you.

Maybe after this is all over, a career in medicine is in the works, this software stuff is overrated.