It’s strange now… I walk into the hospital and I know where many of the departments are, the sounds and smells of the various floors. I know which bathrooms are going to be locked after six and which floors have the best vending machines, when the cafeteria opens and closes and which line there is going to be longest (because that’s the good home-cooked-type of food kiosk). The guards at the desk where you have to sign in after hours not only all know me by name on sight, they just wave me through so I don’t have to fill out the log in sheet. The sixth floor, when you go through one of the green doors just off the elevator, has a different scent from any other floor–it’s more highly ionized and smells like just before a rainstorm. That’s because that floor houses the bone marrow transplant wing and there are enormous air scrubbers at work on that floor and in every patient’s room. I know almost all the nurses by name now, and not just who’s pregnant, but when they’re due, what they’re having, which kid this is for them. One nurse is taking extra courses because she and her husband, who’s Irish, will be moving back to Ireland next year after their second son is born. The nurses are just beyond phenomenal. I don’t know how we would have survived this without their constant help, compassion, and thorough explanations of not only what was happening, but what would happen next.
I know that the little boy, age four, in the first room on that wing is armed with silly string and loves to lure unaware doctors and nurses into his lair.
You see the families day in and day out and get to know which ones are going to be strong and which are going to fall apart. We all tend to try to rally around the newbies, and you can always tell the newbies from the glazed look in their eyes from the astounding volume of medical jargon they’ve just heard and are trying desperately to decipher, and the almost staggering hope that this can’t really be happening to them, not them, no way, they’re going to wake up any moment now and it’s all a dream.
My brother is doing fairly well, though we’re fighting through the bumps and hurdles they warn you about; he’s 42 days old, in their view–42 days past the transplant process. He came home for about a week and we ran around like crazy getting things set up for him, but then the GVHD (Graft vs. Host Disease, an acronym you learn to hate, fast), reared its ugly-but-expected head and he’s fighting off some complications with his digestive tract. The good news is that he’s doing pretty well with the treatment they’re giving him for that, and yet, it’s too early to know how fast this treatment will work and when he’d be able to come back home.
A year ago, he nearly died. Should have, according to all of the experts. The extremely aggressive and rare Gamma Delta T-Cell lymphoma is generally fatal. We were told early on that he had to have a bone marrow transplant to live, and then that he had a rare cell that had to be matched, and then… there was one match. One match in all of the databases in the entire world. And now, he’s alive and getting healthier every day.
There are still hurdles. We have a long way to go.
But I step out of the elevator onto the sixth floor and head toward the green doors and I know I’m going to smell that crisp air, I’m going to see a colorful inlaid tile on the floor leading to a set of double doors, press the button to be admitted onto the isolated wing and greet nurses by name, hug someone in the hall, and walk down to my brother’s room to see how he’s doing. He’s almost always positive, tries to make everyone around him laugh, and has enough faith to move mountains.
It is a good day.
Catch me up on you — how are you doing? I’d love it if you’d check in, tell me something new in your life.