Monday, February 2, 2009

Day +6 - More fevers, brain scan, losing hair!

That's me on the left feeling pretty well, in front of my increasingly large number of pictures and comfort stuff. Unfortunately, I didn't feel that way much of the day today. With my counts dropping, I've been getting more and more tired and have been sitting down or sleeping most of the day. This morning's mile-long walk felt like climbing a mountain. But we're on Day 6 and things are still going relatively well.

This morning when I rinsed my mouth, I saw a fingernail-sized piece of skin in the sink. Uh oh. The oral medicine woman said it probably came from somewhere in my throat, since she couldn't see anywhere it would have come off inside my mouth. She gave my mouth an A+ for being at Day 6 with a mouth this good. Woohoo! My tongue and cheeks are turning a whitish color, and she explained that this is because the cells in the mouth completely replace themselves every few weeks. With the chemo, all those fast-growing cells are essentially disabled, and my mouth is clinging to what little skin and cells it has left. The taste buds are slowly dying, so I'm losing taste, but I'm still able to eat food with some effort.

I spiked a couple more fevers over 101 today, so the docs ordered in the big guns of antibiotics, Imipenem and Vancomycin. I've been on an antibiotic called Ceftazidime, which is what they start all transplant patients on. The transplant protocol from Fred Hutch dictates that patients be switched over to these 2 more powerful antibiotics once they start getting fevers. Since my neutrophils are now at 0.00, this is par for the course.

Last night I had more headaches, and I figured out the right dose of Imitrex that will get rid of the headache but not cause those annoying bone pains in my feet. Trying to balance all this stuff out can be a pain, especially at 4am when you're suffering from an excruciating headache. The docs are still convinced that the headaches are caused by the Tacrolimus immuno-suppressive drug that I've been on since I got here, 24 hours a day via IV drip. But just for good measure, they sent me down for a CT scan of my noggin. I haven't heard the results yet, so hopefully it's all clear. I should know by morning.

Oh! So today while I was sitting in my fancy new recliner, a gift from one of the nurses who brought it over from a recently vacated room, I noticed a funny sensation in my beard each time I bumped it. Well, I grabbed a few beard hairs between my fingers and they came right out! I expected this to happen sometime next week. My head hairs seem to be coming out too, but Johanna and I shaved my head a few days ago so it's hard to tell. So I quickly shaved off my beard, and now I shouldn't have to worry about shaving it for the next few weeks. Oh joy for those little bright spots in my life :)

Unfortunately, my intestinal tract is starting to fall apart, as expected, and this is making it hard to keep food down. I wasn't very successful with lunch today, and was only able to get halfway through dinner. The problem is that the chemo affects all the cells from your mouth to your butt, and the result is more nausea and other unfriendliness like stomach cramps. I was hoping to be able to eat solid food the entire time, but at the rate things are going it's starting to go downhill quickly. My oral mucositis is still in good shape, but if my intestines and stomach don't want to play nice with food, there's not much you can do. I'm hoping to be hungry for breakfast tomorrow morning, so we'll see how it goes.

That's it for now!


Farookh said...

hope you wake up hungry and have no trouble keeping the food down.

Cindy said...

Great news that the mucositis is still in relatively good shape at this point. Let us know how the CT scan results turn out. Funny that you're happy about not having to shave your beard :) You are doing great despite the inevitable effects of chemo.

Simon said...

Your attitude is an inspiration! Who else could talk about having a fever, headaches, puking and losing skin from their throat, and then still get excited about not having to shave?

And as for breakfast, just pretend it's chocolate. Or something else yummy.

- S

PS. Is it wrong for me to be excited that the captcha for this comments is "const"?

George said...

Hang in there... those headaches are sounding a little annoying. But maybe if you play some techno and close your eyes you can pretend yer at a Rave.

Any hallucinations yet? Great post. A lot more than I would have expected from someone with fevers and hair loss and megaheadaches.

You are like super human.

Vanesa Polo said...

You seem to be doing great and not loosing your sense of humor, that is fantastic news!
Thanks for keeping us up to date. I do not comment everyday, but know that I read your blog daily and think of you and your family.
My mom got all her hair back, and now it is a little bit curly not super straight as it used to be, so she is delighted about that! We'll have to wait and see yours =)