Last night John’s fatigue, diarrhea, lack of appetite, pain, and low-grade fever culminated in a decision to go to the hospital. I was somewhat surprised by the nurse and doc’s reaction to our arrival, something akin to, “What are you doing here?” While John’s fever had not reached the red flag level (100.9, he got to 100.3), his other symptoms were causing a lot of discomfort, and from my perspective he had been going downhill (further) for 48 hours. He experienced back pain and cramping for several nights in a row that was only briefly relieved by stretching and oxycodone, and despite his extreme fatigue was sleeping poorly.
Not to worry, they didn’t turn us away. It’s just that, as a transplant patient at Day 12, the norm
includes all of the above mentioned symptoms and more. It seems that each new doc we meet brings fresh information to the table. Last night Dr. K pointed out that yes, it’s very common to get your days and nights turned around, which becomes a vicious cycle that is hard to reverse. The boredom and lethargy of one’s day lead to frequent naps, while the nightly interruptions of bathroom breaks and assorted aches and pains disrupt your regular sleep patterns. He offered John a high-tech sleeping pill that provided minimal results.
By today John was feeling better, so with that in mind along with a little guilt thrown in, asked to be discharged. We are back at the apartment now, waiting and watching the numbers. A slow rise in his white blood cell count is encouraging – it’s gone from a low of .02 thou/ul at Day 5 to .49 today; the normal range begins at 4.3, so there’s still a ways to go. And a few neutrophils are showing up; he’s gone from 0 thou/ul to .02, with normal starting at 1.8.
We’ve also seen the results of John’s latest m-spike, or monoclonal protein test, the number that got all of this started. He has gone from 1.1 in June when we first arrived in Seattle, to 0.6 after his first round of chemo, to 0.3 on the latest test. The goal is 0, indicating no presence of disease. As another doc explained to us, the monoclonal protein has a half-life of 30 days, so it is too early to expect a reduction to zero. At 80-90 days post-transplant, John will undergo a complete battery of tests and “re-staging” of the disease, and we’ll be able to determine what level of remission the transplant achieved.
Marilyn
Good Blood, Bad Blood 