I always hate walking back into the hospital.
The first time, the Monday we flew down here, was the very worst of all. Each time, you round through the gigantic revolving doors, gel your hands with antibiotic alcohol, and try to breathe despite the elephant that settles in atop your chest. That day though, the elephant lingered far longer than usual. The only thing I could really say for the first half hour we were there was, “Ugh.” That was 25 days ago. Now when I walk in, round the gigantic revolving doors, gel my hands, and I fight that elephant from coming anywhere near me. It’s not that I don’t want to see Sam, it’s just not all that pleasant feeling like I live in this sterile hospital so far removed from normal life, good health, active adventures and … well, most other things that normally occur within the span of 25 days. (You - and I - can only imagine then how Sam feels about it, so I try not to complain!) Now, as I walk from the entrance, through the pre-op waiting room and over to the B elevators, I mostly alternate between thinking, “ugh,” and just contemplating the weird alternate reality we’re living in, and how great Sam is doing despite it all. Today was different in the best way though. Today, Sam’s very persuasive, fiery red-headed nurse practitioner convinced his team of doctors that Sam should get to be switched to oral antibiotics (instead of IV) and thus, disconnected from his IV pole. I could try to explain how awesome this is, but I feel that only Sam’s words will impart the enormity of this decision. (I’m paraphrasing, but this is pretty close.) “Jenny, do you know what being disconnected means?” looking at me excitedly. “First of all, I can do the Sam dance.” (He proceeds to do the Sam dance, which if you haven’t seen it, is an amazing display of wayward elbows and knees and funny facial expressions that is really quite hard to explain.) “And I can put on a T-shirt, and I can wear long sleeves, so can you bring me a sweatshirt next time you go home?” “AND, I CAN GO OUTSIDE.” So, outside we went! We walked down to Lake Mendota and back. No squeaky IV pole, no fluorescent lights, no 0.2 mile laps on the 6th floor. When we got back, we entered UW Hospital hand in hand and it felt one hundred million times better than walking in alone. It felt like progress. Then Sam made us take the stairs to the 6th floor. Because he’s either the healthiest sick person I know, or the sickest healthy person I know. I can’t decide which. Here’s what happens next. We’re still waiting for his blood counts to come back up before we can leave and begin the transplant process. People who are young usually have counts that bounce back faster than people who are old (which is most people with AML). Unfortunately, since Sam has already had so much chemo, no one expects his to bounce back in any hurry. Today is his fifth day with a neutrophil count of 10. (He gets to leave when it gets up to around 500. A normal neutrophil range is 1,500-7,500. Neutrophils are the cells the fight infections.) So we’re here waiting for that and making sure he stays infection-free. In the meantime, his hair is falling out in patchy clumps that look like he got a buzz cut from a three year old, and the hospital menu has been committed to memory. We watch the Tour de France every night, and play cards and our new games from our wonderful AK friends who visited this week (Thank you Emily, Zac and Amanda!). Mostly though, we just work, hang out and pass time. And now, we do the Sam dance in 636.
Mom
7/10/2015 12:08:15 pm
I've somehow missed the Sam dance but I know -today- its a lovely ballet. Congratulations on a tiny bit of freedom. More to come.
Bev Mangerson
7/13/2015 06:07:42 am
Nothing like a bit of fresh air to bring up your spirits! Hang in there you guys. Comments are closed.
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