February 19, 2002|
Mickey Mouse Phones, Darth Vader IVs and Doing the Shower Limbo
It’s Day 1 here at Sloan Kettering, Art reporting from the Peds (pronounced “PEEDS”) Floor. Friday was quite the move. You would have thought Diana Ross had entered the Peds floor with the entourage of handlers and baggage that I came down with. The hall looked like a refugee camp- a bright happy refugee camp (insert smiley face!). The hallway walls are painted a bright (screaming) yellow and dark (joyful) purple. My room, while the trademark hospital white adorned the walls, had a Valentine’s heart on the door, smiley face corkboard, and a Mickey Mouse phone (standard in all Peds rooms, thank you very much).
As if all of this wasn’t shock enough for my system, the worst I have yet to write. The room is half the size of my old room.
That shouldn’t have shocked me as much, I mean c’mon, duh, you are moving to the kids floor where they are half your size. A room like this would be gargantuan for them. And a room like the one I had upstairs, heck you could have had a very competitive game of hide-and-go-seek or capture-the-flag in it (Okay, you got me, we played once…).
Other than the size of the room, I can’t complain. The nurses have been exceptional. They are diligent, thorough and all roughly my age. (“So, uh, you come here often? Did I mention you look fabulous in white? Nice scrubs!”) The TV is bigger. Parents get free meals. It’s not a bad deal at all.
Sunday I was attached to a new IV. Not just any IV, but a Darth Vader Star Wars-looking (and sounding) IV contraption. I couldn’t help but play “The Imperial March” on my computer while I was being hooked up to it. It is huge. There are approximately 234 different pumps that attach to the three computers that attach to the tubes that lead to the three tubes in my catheter.
By the way, also to dispel any rumors, I don’t have a real catheter. Those are gross! I can get up and walk to the bathroom on my own, no need for such devices. The catheter I speak of is the one that is attached to a main artery in my neck, which then goes under the skin and protrudes out of my chest. It then splits into three different udders, which attaches to the ten-foot tubing which attaches to Darth.
Now the room is small, so I don’t have to move Darth at all. The ten-foot tubing is ample enough that I can reach all corners of the room, except the shower. If you ever need a good laugh, you should see me shower…hold on, that didn’t come out right. What I meant was that it is difficult enough showering with a catheter in your chest. It doesn’t get any easier when the tubing doesn’t quite reach all the way to the end of shower. My torso is bent back, my arms are flailing to help maintain balance, as the tube is completely taut around the shower curtain, connected to Vader outside the door. It looks like I am in an intense limbo match. Meanwhile the water only reaches as far as my bellybutton (Remember? Peds floor, They’re all midgets. The bathroom sink must be eleven inches off the ground and the toilet is closer to six. The shower-head, around four feet.), so I have to somehow manage to utilize my poof and shampoo while trying to get wet while trying to not fall and lose my balance (and hence lose the limbo match). It is an incredible act of skill, bravery, courage, flexibility and suds.
Hot in the Middle, Cold on the Outside
So the next question invariably will be: “How are you doing?” Well, so far so good. I have had very few side effects to any of the many chemotherapies, antibiotics, anti-fungals, anti-nausea…that I am on. I had a short bout of nausea, an hour of back pain, a fifteen-minute fever and a sour stomach. That’s about it. I feel great. The only other side effect I have had is from an anti-graft vs. host disease drug. The side effect, which is documented, makes your fingers and toes freezing cold, yet makes the rest of your body extremely hot. I have been through many a bizarre side effect, but this one is may top the list. Itís not painful. It’s just annoying. And confusing. My brain wants to dress me in shorts, a t-shirt, boots and gloves.
Nothing else to report. Tomorrow is transplant day. Billy’s cells have successfully been harvested and now it’s just a matter of getting them in and working. More on that in a later update.
Thank you all so much for the many cards, packages, visits and e-mails. It has made all of this so much more bearable, knowing that you are out there praying and thinking about me. God is listening and is working. I know. I can feel it. I thank you, and Darth thanks you.
Memorial Sloan Kettering Cancer Center
1275 York Ave.
New York, New York 10021