Wednesday, February 25, 2009

Day +29 - Preliminary results from biopsy are good!

The flow cytometry tests from my bone marrow biopsy came back negative, which means my marrow is functioning normally and there are no signs of the disease. Woohoo! The pathologist's report isn't ready yet, but this is great preliminary news.

Yesterday was a pretty long day at the SCCA. The infusion rooms were full and we had to wait a while to get in and then the Mesenchymal stem cells were delayed even further at the lab. So after a blood draw in the morning, I was back again for the infusion from 1:30 until 6. Luckily I only have one more of these infusions to go. I picked up a few more bags of magnesium IV fluid, and then it was over to pick up Johanna and head home. It's amazing how many supplies are required for my daily maintenance. I have to be diligent about keeping track of when my saline and heparin flushes and all the other various supplies like IV tubing, alcohol preps, Hickman dressings, parafilm, and tape are running low. On top of that, I only get 4 IV bags of magnesium at a time, so I have to remember to visit the pharmacy whenever I'm there to pick up more, which requires getting in touch with the RN if the order hasn't been sent down yet. On March 8th I'll be switched over to a home-delivery service which will be great.

A couple of days ago I started getting a rash in my underarms, which has now started becoming painful, and I was concerned it was a resurgence of graft-versus-host disease (GVHD) now that I'm tapering off the Prednisone steroid. But the doctor said it was just a chafing issue. I thought that was weird, since I've never chafed there before. Johanna had mentioned the night before that maybe I was losing my underarm hair, and I was like "no way". But I took a closer look in the mirror and lo and behold, there's no hair there! The conditioning chemotherapy I had for the transplant has caused a lot more hair loss than the induction chemotherapy. My head and face are completely follicle-free, and I haven't shaved in weeks. The rest of the hair on my body is probably 30% of what it was before, and my eyebrows are now starting to thin quite a bit. I'm not sure when it will start growing back, but with my puffy face and almost hairless body and still-weird eyes, I look like a pretty funky dude.

The other annoying thing is that my lips are constantly chapped, and I've determined that the skin there is sloughing off about every 3 days. So they're either in a state of being chapped and peeling, or fresh and pink and sensitive.

Finally, my eyes are clearing up and you can see more white in them, but I get blurry vision and teary eyes a lot now. It's a result of one of the medications, but it really makes it annoying trying to do anything like work on the computer or read or drive. I usually have to rest my eyes for an hour every few hours to keep them going.

Other than that, things are great :) I'm tasting more and more foods, and my appetite is still ravenous, even though I'm tapering off the Prednisone steroid and am only taking half the dose I was taking at the beginning. The dose will continue tapering down until it hits 0 on March 20th. I'm a little anxious about this, since I'm wondering how much the steroids are masking how I'm really feeling. The docs expect me to feel more fatigued, less motivated, less hungry, and possibly nauseous once I'm off the steroids, so we'll see how it goes.

Today and tomorrow I have no clinic appointments, which is awesome. This morning my dad and I walked Johanna to the bus stop and then we continued on to Cloud City Coffee and back home for a nice 3-mile walk. I'm looking forward to puttering around the house and working on fun projects all day.


Neal Freeland said...

Promising news! Can't wait to read about the projects you're going to work on at home.

Curly_Bird said...

" sign of the disease."

What a wonderful, amazing, super-cool statement!

Beth said...

Great news, Steve. Yea!!

Beth and Jeff

Cindy said...

That is completely incredible and so exciting that your marrow is functioning normally and there are no signs of the disease. :)

The field of science deserves serious kudos for making you healthy again!! Here's a big thanks to all the doctors and nurses and amazing drugs and treatments available, not to mention your hard work, and the support of Johanna, friends, and family :)

I know we still have to be cautious and wait and see how things go, but I think it's important to celebrate how amazing things are going so far!

Scott said...

Wow Steve you seem so positive... It's absolutely amazing. I'm a big believer in the power of positive thinking, and at this rate you should be just fine ;)

George said...

Hey man.... still thinking of you and absolutley fantastic news. I heart the Stever machine :)