Reckless behavior

I am not sure why, after staring death in the face for so long, I apparently find it difficult to take it easy. I guess I am just totally fed up with being “sick”. But just because I have been feeling good lately apparently doesn’t mean that I have a functional immune system.

I was sure that it was on its way back. I finished my first round of maintenance etoposide two weeks ago, with no symptoms other than a couple of tired days at the end. I was to begin the next round one week after finishing the first round, but my doctors and I agreed to wait a week longer than planned to give my white cell count could have time to recover from weak but viable (ANC of 680) to robust (~1500) before hitting it over the head again. Since the danger level is an ANC of below 500, and it had been a few days since my ANC was 680, I figured that I had some margin, and decided to fly out to rural Missouri to meet up with Sarah and see where she grew up. I even wore a mask on the plane, just to be safe.

After a day driving around the ranch and hanging out with the family, I got a sore throat, and then a fever that wouldn’t go away. My doctors sent me off to find a lab to do some blood work, and called in a prescription for prophylactic antibiotics to the local pharmacy. The nearest capable lab was an hour’s drive from the ranch, which is itself an hour and a half from the nearest airport. I figured that it was all overkill, and set out thinking that it was at least a good excuse to take a drive and see the countryside.

Three days later, I am still in the hospital. My ANC had mysteriously crashed to … seven. Not 700, seven. I had been bottle feeding baby calves with basically no immune system.

Finding myself hospitalized in Sedalia, Missouri was surreal. What was I DOING there? And wasn’t I done with this ridiculousness already? Giving my medical history over and over, endlessly getting stuck with needles, beds that make noise and move for no good reason, choosing between going hungry or eating “food”, constantly making sure that my nurses were washing their hands, relaying information to parents while trying to manage worry, and waiting… and waiting…. It was the twilight zone.

After one night and day of IV antibiotics, I felt great, and started trying to figure out how to get out of there. There was a range of opinion on when I could leave, with my oncologist in LA recommending that I just get home and be treated by people who knew me at a bigger, better medical center, the local doctor prudently advising that I stay until my counts had fully recovered, and my oncologist at Stanford splitting the difference. We pushed our travel plans once, and then again. How to measure risk, and balance it against comfort? Surely getting on a plane without an effective immune system was dangerous – it was probably the reason that I was in the hospital to begin with. But despite competent care (what are all of those doctors with heavy foreign accents doing in rural Missouri?), it just didn’t feel right to stay there, isolated from everything. I needed to get home. Feeling fine, having been more than 36 hours without fever, with negative blood cultures, lots of antibiotics coursing through my veins, and planning on going directly to the hospital on arrival, I ruffled not a few feathers by leaving AMA (“against medical advice”), put on an extraordinarily uncomfortable mask, and got on a plane home.

I am happy to say that the most dramatic moment of the travel day was being bumped up to first class – at least the Cancer Card hasn’t lost any of it’s magic. I checked into the Stanford ER at 10:30pm, and after many more needles, repeating the same story countless times, being strung up like a marionette with a dozen wires, and hours of waiting, and waiting, and waiting, I got into my room at 4am.

Thankfully, this ridiculous interlude has come to an end. I was discharged this afternoon with a fully recovered white blood cell count, and am blissfully without IVs and tape all over me, breathing the outside air, watching the fall leaves, and smiling.