Tuesday, February 3, 2009

Day +7 - CT head scan was good, more high fevers

First off, yesterday's CT scan of my noggin came back squeaky clean. Hooray! I was a little more worried about this than I realized. Part of it has to do with the fact that we've never scanned my brain, and I always had this nag that we should, just in case there was a tumor. A fellow blogger with leukemia had been diagnosed for a year, and it wasn't until doctors at the Hutch heard from her that she'd had some vision issues long back, that they ordered a brain scan, and lo and behold, found a tumor. So each time I get a bad migraine I always worry that maybe there's something going on up there. So getting these results relieves a nag I've had for a while. They also saw that my sinuses were totally clear and free of infection.

Johanna stopped by to get my day started, and though I was hungry, it took quite a bit of effort to eat a bowl of Raisin Bran and peaches. What's happening is that my mouth is desperately clinging on to the remaining cells lining it, but that lining is getting thinner by the day. I can see blood vessels and nerves threading around it now, so it's really thin. And painful in places. But the diligent mouth rinsing and keeping it clean has paid off, and other than a little bit of pain, I still don't have any ulcers or infections and I'm able to get food down. Right now my winning combination of food that meets the criteria of still tasting good with my dying taste buds, having enough calories and protein, and soft enough that it doesn't cause too much pain are Ivar's clam chowder, raspberry jello, hard-boiled eggs, milk, high-fiber chocolate shakes, and sufficiently soggy Raisin Bran. Not a huge selection, but enough to keep me going. My nutritionist wants me to get at least 1,200 calories and 50 grams of protein a day. If I'm diligent about taking the anti-nausea meds before I eat and make sure to order food even when I feel like crap, I can usually meet the goals. In fact, I've been gaining a couple of pounds in the last few days.

Val flew in from Los Angeles today and cabbed over to the hospital to hang out with me for a bit. We walked another mile around the floor before being joined by Rachael and Nic, who we chatted with a bit until I was briskly whisked away by the radiologist for a CT scan of my lungs. Nic gave me a "medal" from the last marathon he ran. These are usually cute, home-made little items, and Nic had created a medal out of a beer coaster and nylon rope, since he actually organized this last race. Totally cool! By the way, I've mentioned it before, but Nic is undertaking a herculean effort of running 13 marathons in 12 weeks, and he only has 1 marathon to go! He's raising money for the Leukemia and Lymphoma Society, a great resource that has helped us. If you haven't donated yet, there isn't much time left. See if you can help him reach his goal at 13in12.blogspot.com

The snot guy came again today and collected more snot. For the little device that measures how powerful your lungs are, I beat my record over last week by expelling 4.5 liters of air in 1 second and 5.2 liters total over the remaining 5 seconds. I'm shooting for 6 liters, since they've never had anyone on the floor get that high. My lung capacity is around 7 liters based on the tests we did at the SCCA, so it should be possible :)

Last night was pretty rough. No headaches this time, but I spiked a fever of 102.8 during the night. Having a high fever at night is a tough thing to get through. As you try to sleep, it starts with waves of shivers and then soon turns into uncontrollable shaking chills. I turned up the temperature in the room and then huddled under the blankets, waiting to warm up to whatever new temperature my brain had set its internal thermostat at. After an hour of this and feeling totally uncomfortable, restless and helpless, the shivering slowed down and I finally felt warm again. But my heart rate was running at 95 bpm, way higher than my resting heart rate of 60. It's impossible to sleep in this state, since the high temperature and fast heart rate make you incredibly anxious and can cause you to be delusional. It didn't help that I had just finished reading Into Thin Air that night, so I had dreams of cold weather tents, high-altitude sickness, and and an urge to help my fellow climbers. Other weird dreams I've had during fevers are feeling like my body is scattered all over the place, running as separate systems, and it takes a second when I wake up and look down and realize there's just one body, me, in the bed.

So I rang the nurse and said, "I think I'm running a fever", and 102.8 it was. She gave me Tylenol, which helps drop your temperature back to normal over a couple of hours. It's funny, but whenever I'm recovering from a high fever and am back to normal temperature, I feel on top of the world! Seriously, I feel 100% perfect. The cool air feels good, I have energy, and my head is clear. It's like hitting a reset button. I had my 3rd high fever of the day today just a few hours ago, and after notifying the nurse and getting Tylenol, again I feel great right now. Maybe it's the intense workout of your whole body shivering and having a high heart rate. The docs say the new antibiotics will take a few days to kick in, so hopefully we'll be done with these fevers soon. They really aren't very fun to deal with.

Other than that things are going pretty well. My calf is no longer sore, and my blood counts are exactly where they should be. I'm still walking 2 miles a day, able to eat solid food, and my mucositis is a grade 1 out of 4. The only issue besides the fevers is a small skin rash on my hand that the docs are monitoring. It itches occasionally, but it's not bothering me much. It looks pretty terrible though. See what you think.


Anonymous said...

Steve, are they thinking the rash is GVHD? I know Dad gets GVHD rashes sometimes, but of course that doesn't guarantee that yours isn't something different. Maybe if Dad gets on here before you have an answer about the rash he'll have something to contribute to my guessing.

Sending you happy thoughts from Spokane!

Diana (McLean) Serquina (who is having trouble remembering her Blogger password in the middle of the night, so will show up as Anonymous)

Steve Rider said...

The docs think it might now be GVHD, but initially didn't think so since they said normally GVHD issues don't show up until engraftment, which is probably a week or 2 away.

Cindy said...

I guess I didn't realize the process of engraftment--that it takes a few weeks from the time of the transplant to take effect. So until engraftment takes place (when the new healthy blood cells start to reproduce), you'll have to rely on blood and platelet transfusions to keep you going?

That rash looks angry...

Beth said...

Well back again. I see the CT on the noggin came back "clean" -- surely that is a big + vs. "empty", which would definitely be a concern.
Sorry about the headaches that's not fun. Interesting that you suffer at 102F for a while then you feel better. Glad about the feeling better.
I agree with Cindy, the hand looks angry.
Jeff and Beth

P.S. how much time do you spend each day making up the letters for the word verification required prior to posting. That seems like a time consuming task in itself.

Trevor said...

Yeah, what's up with the word verification process, Steve? Some of those words don't make any sense at all. For instance, in order to publish this, I have to type in "tived." What does that mean??? Are you coming up with these words during your delusional fevered states? If so, all I can say is, "More Tylenol, nurses! More Tylenol!"

P.S. You may feel crappy, but I don't think I've ever seen or heard of a patient walking 2 miles and huffing 5+ liters at Day 7. What's your vertical leap these days? How much are you benching?

Anonymous said...

Hi Steve-
I'm an old highschool friend of Cindy's. I heard about your story through her facebook page (thanks Cindy). I want to wish you the best in your recovery and thank you for sharing your journey, it is so educational for me to read your blog.

Keep the hope and positive attitude alive! I am praying that you can beat this nasty bug!
-Katrina (Longhini) Hendricks