Friday, January 30, 2009

Day +3 - Bicycle bell, sore calf, some mucositis

Rachael, a friend of ours who works at UW Medical Center, stopped by and had this great gift for me, pictured on the left (click to see a bigger version). It's a coffee cup-shaped bicycle bell!! We had been joking that I needed a bicycle bell for my IV pole, for those times when I'm walking the halls and get stuck behind a bunch of residents and doctors. We fastened it to the pole and it works great. How cool is that? Looking forward to my next walk :)

Last night I had a great night of sleep. I only woke up once at 6:30 am for vitals and again at 8 am for some other reason. The Ativan anti-anxiety drug is definitely the key to a good night's sleep. I asked the nurse to put it on my orders which will cause them to ask me each night if I want it. This way I won't forget like I did the other night, and ended up tossing and turning until morning.

My calf is still incredibly sore, and last night the nurse came by with a water pump and heat pad. The pad is basically a sheet of plastic with thousands of narrow channels for water to circulate. The pump heats the water and then circulates it through the pad. I tried it for a few hours last night and it helped a little bit. This morning I woke up and it was still very sore and sensitive to the touch. I limped a few laps on our morning mile walk, but by the time we'd finished it was limbered up and feeling pretty good. Though it's become incredibly sore again after resting it for a while. The doctors tested my blood for muscle problems, which I didn't even know was possible, and reported today that they all came back negative. The most likely explanation is that it's a result of the chemical imbalances taking place in my system, and that a cramp I might have had is just taking longer to recover because of it. In the grand scheme of things it's not a big deal, it's just surprising that it would be sore this long.

The oral medicine woman came by again to inspect my mouth for mucositis. She said it looked really good, but that some mucositis was starting to appear, but that it was relatively minor and didn't consist of any open lesions or ulcers. Woohoo! I'm starting to notice some of the mucositis symptoms that I had last time, like tenderness when I move my tongue around and increased sensitivity around the gums when I brush my teeth, so keep your fingers crossed that it stays relatively minor and doesn't go into full-blown hell. Last time I was unable to eat or hardly drink by this point, so I'm doing 100 times better this time around. Just recently I found out that the oral medicine woman is a guru on this kind of stuff, and works closely with Dr. Schubert, world-renowned as the leading expert on oral mucositis as a result of stem cell transplants and cancer treatment. I continue to be impressed by the highly-credentialed staff here.

The 2nd dose of methotrexate chemotherapy was administered today, again in a small syringe. This is to prevent the new stem cells from growing too quickly and potentially becoming overly hostile, and giving them time to acclimate to their new environment and set up shop. The next and last doses will be on Day 6 and Day 11.

I'l leave you with an absolutely hilarious and touching comment that was posted by my friend, Simon, the day I got my new stem cells.

To Steve's new stem cells:

Thank you so much for leaving your home, your family, taking that long flight (aren't those airline seats just the worst?) and enduring the indignity of being pushed around through needles, bottles and tubes. But I think you're really going to like your new family. Stever's an awesome guy, and he's always up to something fun and exciting. There will be scooter riding (which, lemme tell you, is *hella* fun), walks, coffee (you little guys do like coffee, right? Right!?!?) and all sorts of fun, crazy adventures. You'll get to learn some new languages. OK, they're not really languages, but we geeks like to think that they are. Think of all that time in front of the computer as down time. Relax. Find something fun to do, like, oh, make new white blood cells! Yeah! You guys love doing that!

You're really going to like the rest of Steve's family - they're wonderful people, who are so grateful that you made it here. And of course there's the amazing Johanna, who will love you just as much as Steve does.

Because Steve and Johanna are such fabulous folks, they of course have lots of friends, who are now your friends too. Feel free to add us on Facebook - we'd love to be friends with you. And if you ever want to hang out, or want to go check something out in your new home, or grab a meal, just let me know and I'll be ready to go. Especially if you convince Steve to come along on his scooter.

So go forth little stem cells, and multiply. Good luck getting settled in your new home, and please don't hesitate to call, text, email or even send smoke signals if you need anything.

Your new friend

- Simon

PS. Happy Birthday Stever!!!! :-)


Beth said...

For sure the bike bell is cool. However, if you get tired of "ring ring" let me know and I'll pull an air horn off one of Chuck's trucks and you can clear the hall and break windows!
Jeff and Beth

Farookh said...

good going steve! keep it up.

and that is the cutest letter! nice one, simon!

George said...

Serious I think this is the best news yet. Little mucositis. I'm probably 2nd or 3rd after you in not wanting you to get that horrible thing.

d0od you are kicking ass!! Keep it up.

George said...

Ohhh and I really need a bell like that. Can you tell me where they got it?

Anonymous said...

Steve, congrats from the McLeans on the transplant! Today is Jon's four year anniversary....YEAH! You mentioned the visual side effects of the Posiconisol (SP?) We remember Jon had visual and audio side effects that kept the staff entertained with stories of the Red Army Chorus singing from his HEPA filter.