Home at last

Wednesday was the magic day. Ever since beginning chemotherapy, the routine at the hospital had been to draw blood at 6 in the morning, so by the time the doctors started making their rounds at 9 my blood counts would be in, and the course for the day could be determined. Early on, while everything was at rock bottom, I was given a variety of blood products to help boost some of the numbers (packed red blood cells for my hemoglobin, platelets for my platelets, etc…), but my white blood cell count was left to grow on its own, so that the oncologists could see what was happening with the treatment. Last weekend the numbers started to go up, slowly but surely. And, by Wednesday they had finally gone beyond the level that was considered neutropenic, thus giving me the green light to go home.

The discharge process is an interesting one. One of my nurses suggested I start making “a lot of noise” just to make sure all the coordination that needed to happen actually happens between the medical doctors, the oncologists, the infectious disease doctors and the pharmacy. It went as smoothly as possible, with the exception of the pharmacy. Apparently I was the only person in the hospital taking ATRA (Tretinoin – the main drug used to combat acute promyelocytic leukemia) and they only had enough pills to cover two doses (or 9 capsules) — enough for one day. I needed enough for a month. Not sure where they got them, but we returned to the pharmacy on Thursday and they had the remaining 261 capsules ready. (On a side note: I’m not exactly sure what I would be doing if I did not have health insurance — I found out the cost of that particular medication runs around $7,000 per month, and I’ll be on it for at least a year… do the math.)

At any rate, I’m home now. I’m mostly spending my time resting, sleeping, watching movies, eating, sleeping, sitting in the sun (nothing feels better after 31 days in a hospital room than fresh air), taking baths (as a parting gift they removed my pick line, so I am catheter free until my next round of chemo), and the best part, sleeping in my own bed (I think I can get used to not being able to raise my head and feet, having my vitals taken at all hours of the day and night, starting an i.v. at 2 a.m., etc…).

Regions Hospital, Room 8102

It’s not over, yet. The plan for the next stage includes visits to the oncologist, several days a week of lab work, commencing the next round of treatment (consolidation) — which will require another hickman inserted in my chest and more chemotherapy — reduction of white blood cells (which means becoming neutropenic again), another stay at the hospital, rinse and repeat (at least twice). But, it’s one day at a time here at the Sattler-Reimer residence. So, we are enjoying the days I do get to be at home, even if I am sleeping for most of it.

Cooling Down

This past week or so (I guess it’s been at least that long) was probably the hardest. My days were basically a series of rigors (which quickly disappear with a 50 ml injection of demerol) followed by a fever spike (including all the fun that comes with a fever) and then a slow descent back to normal –all this happening 2 or 3 times a day. This seems to be par for the course for neutropenic patients, yet the medicine doctors (not the oncologists) jump at any fever and draw blood for cultures, other lab work, start an new antibiotic, order chest x-rays, anything. The oncology nurses seem more familiar with fever patterns and, as with the oncologists, are convinced that once my white blood count increases, particularly my neutrophil count, things will start to level out.

Needless to say, I’ve been feeling a bit under the weather, and haven’t even looked at the computer for the last 4 days. Details are a bit murky, as well. I’ll try to be better about more frequent posts, once my body start to cool down for a bit.

Thanks again for all the well-wishes, the meals, the books and dvds (not much of that going on right now, but there’ll be plenty of time for that in the near future), and general outpouring of generosity. It really helps.