Thursday, March 24, 2011

Transplant day - 4 (aka Thursday)

Hey, all. In the stem cell transplant world, all days are measured +/- your transplant day. My day is scheduled for next Monday the 28th and is called day 0. So today was -4. It was a day like other days today - getting poisons pumped into my body, trying to take a dump, writing some code - same old, same old...

I had kind of a bleh night last night. Five doses of chemo in three days kind of caught up with me and I spent the night with some mild GI discomfort and also some hot flashes. Took my temperature and it was  normal and I did get about six hours of sleep so it wasn't too horrible but still not great. My big concern with getting a temperature is that it might be a sign that I'm getting some more lung problems from another one of the chemo drugs. So I was happy to see that although I felt a bit flu-like I didn't have a temperature.

At the infusion center today we met the head doctor in the practice who I knew was a big bike guy. We are also both 1958s so we got along well right out of the gate. He's coming off a hip replacement surgery and is inside working on his bike trainer and plans to get back onto the road in April. We chatted a bit about Paris-Roubaix and then got down to the business of how I"m doing. Basically, this week has been unremarkable. And that's a good thing. My counts are all pretty reasonable; they'll start to tank early next week as the chemo really works its magic and that is by design. He's a very positive, direct, take charge kind of guy which resonated well with both Susan and I. After that consult, I got hooked up to the sauce and Susan got out for a nice 90 minute walk around the hospital area, down towards Cheeseman Park. Susan used to live in this area of Denver and I think she's enjoyed getting to stomp around her old hangouts. We've had some long days cramped up in a private room in the infusion center and although it's been mildly tolerable for me since I just stick my head in some code for Susan it's been a strange combination of stressful (worried about me) and just boring. So I was happy to see her get out for a good walk this morning.

After I finished the morning session we ate an early lunch and went out for another walk. Initially we thought we might make it up to Louisville between morning and afternoon sessions but it seems like it's just a bit too far. We'd probably spend 50% of our free time just sitting in the car which wouldn't do either of us any good. So we've been walking, eating lunch just hanging out in that area of town between sessions.

Today for our lunch stroll we headed over towards the Museum of Science and Technology. There are some nice views of Denver from City Park:

After this picture we decided to do some light hill repeats up a small hill (small, like 15 yards and about 10 feet of vertical). It doesn't sound like much but when you've been sitting on your ass all morning doing nothing those little jogs uphill really felt good..

On the east side of this lake is the bandstand which is, I guess, where bands stand when playing (?):

and the main building where you can, uh, do main building kinds of things. I guess I wasn't paying a lot of attention on this part of the walk:

At the end of this walk, we cruised by the hospital (a couple of blocks from the infusion clinic we're using) to get a bit of an afternoon snack. At this point my counts are OK but we decided that we should really start practicing very strict anti-infection behaviors. It takes a bit of practice to remember to do these things since I've historically been pretty much an  anti-clean freak. So here are a few tests for you:

You're in the lobby of the hospital, see a newspaper and start to pick it up. Good or bad idea?

Bad. Who knows if some little kid just sneezed all over it or not. You go to pay for your lunch with your debit card. Should you? No. You're about to trade skin bugs with someone that's been handling money all day and has traded skin bugs with a bunch of other people before you. Better let your handy wing-woman buy you a snack.

Ok, so you sit down in the lobby to get some time out of the infusion room and see lots of kids moving through the lobby, probably visiting family members since lots of schools are out this week. Should you stay in the lobby? No. Basically you should always run away from places with crowds or kids when your counts are low. So you cruise back to the infusion clinic and take the elevator. Next challenge - should you touch the button to call the elevator?

Hell, no! Who knows what bugs are sitting on that button ready to jump onto your fingers and then crawl inside of you the next time you touch your eye, your nose, your ears, cough into your hand, etc. It's a nightmare out there! So you use your jacket sleeve to shield your hand and then get in the elevator. What awaits? More buttons!!! It's a crazy, scary world when you have no immune system. So you again call on your awesome assistant. But what happens if she touches it and then touches you? (I like it when she touches me so this is not a behavior I want to discourage). For this situation, give it the old BMT (Bone Marrow Transplant) handshake and use your elbow to push the button, like this:

And finally, don't even get me started about the scariness of hitting the bathroom in a public place. Which, when you're getting a few quarts of electrolytes into your system as part of the chemo process is something you do. A lot.

So that's the whirlwind tour of getting ready to be without an immune system. Now's the time to really get serious about this stuff to avoid problems in the next couple of weeks. Some rules I will be working to live by:
  • Be really careful about what you touch
  • Don't touch your fingers directly to your nose, eyes or ears (this is why Mr. Kleenex is your friend).
  • New bath towel (including washcloth) every day
  • Rinse mouth 4x/day with salt/baking soda combination to reduce mouth sores from chemo and make your mouth a healthy, happy place.
  • Brush teeth 2x/day minimum but don't floss
  • Don't eat out
  • Don't hang out in crowds
  • Don't eat  a whole bunch of food that can carry bacteria or molds into you. Since we're mostly vegan we already get to cross a bunch of these off with no effort. But some are tricky - for example, no salad from public salad bars.
When I got home I threw the Blues Brothers DVD onto the laptop and did a light spin on the wind trainer for about 25 minutes while Susan whipped up a simple dinner of mashed potatoes, salad and a chicken tender like substitute we've grown to like that's made from soy and wheat protein. Yum!

As a final nice way to finish the day, we did some music therapy tonight. Singing and playing guitars and pianos. I hadn't played my guitar in several months so it was a pretty ugly session but we both really enjoyed the power of the music.

So that's it for day -4. Tomorrow is another long day, Saturday is short, Sunday is just a quick check-up and then Monday is blastoff day when I get my stem cells back. Hooray!


  1. Love the tour. Why can't you floss?

  2. Good question. The jury is a bit mixed on flossing. In general, flossing is a good thing - gets gunk out of your mouth before bacteria can develop. However, if you've already got some gunk in your gums, flossing will release it into your mouth, then the rest of you, then bad things happen. Some practitioners say that if you're a regular flosser, keep it up, but don't start it up right before your transplant. Others say the risk outweigh any benefits over a 2 week period or so. We've decided (based on the advice of the top doc here) to hold off on flossing for the next couple of weeks. More detail than you wanted to know probably but since you asked :)

  3. I like the tour too. Makes me feel connected to know the day to day. Especially the details about the architecture in city park. :)

  4. Yes, being a virtual tour guide is what I'm all about. But you need to catch up and read the next post about laminar water flow over my noggin. Now that's a virtual tour worth reading!