Day +41

Sorry it's taken so long to complete this long post. I fear it will be anticlimactic, as there's still not much to share.

To recap, when I went to the hospital last Saturday with a fever and exhaustion, it was assumed I had a bacterial infection of some sort. So they did a bunch of work-ups and started me on IV antibiotic. Usually antibiotics start to work in about 24 hours. And my fevers didn't go down. It's now been long enough that we know that none of the two sets of blood cultures grew anything during the five days of incubation.

The bone marrow transplant doctor on Sunday made a comment that they saw that my CMV test the previous week had shown detectable, but not measurable copies of CMV. So he ordered another CMV test.

And that sent me into a dark place. CMV is cytomegalovirus, which is one of several herpesviruses. Like the ones that are more common (causing cold sores, mono, or genital herpes), once you have been infected, the virus stays in your body, but can be reactivated periodically. About half of adults have been exposed (and therefore are positive for) CMV. And it's a very minor disease that almost never causes issues, or even symptoms. The three exceptions are in newborns (transferred from pregnant mothers), HIV patients, and post-transplant patients. We knew that I was positive for CMV (thus my weekly lab work to follow levels), and there was certainly a risk of it reactivating when my immune system was knocked down. As of Sunday, we didn't know if that was it or not, and I spent too much time internet searching what it meant to get CMV after a bone marrow transplant. Fast forward to today (over a week later) and after meetings with the infectious disease doctor (who had me tested for a slew of other viruses, too, including getting another COVID-like nasal swab), the new BMT doctor on rounds, and today Dr. Hamadani, I'm a bit more calm.

Essentially back in the 1980's, the only way to test for CMV was a culture that took three weeks for results (now the rapid test gives results in under 24 hours). In that time, CMV could infect organs (often the lungs or brain) and was often fatal. However, by tracking the levels weekly, it's possible to catch when the viral levels first start increasing and there's an anti-viral to reverse it. While I was still in the hospital, they started me on an IV anti-viral called ganciclovir. When I left the hospital, it was switched to the oral version, valganciclovir. And that's what I'm on now, because my second test was higher than the week before. The plan is for me to be on this stronger antiviral for about 2 weeks. They'll check my levels next week and if they're again non-detectable, I'll stop the valganciclovir and go back to acyclovir. If it's lower, but not completely gone, I'll still decrease the dose.

None of the other viral tests came back positive, and because a low level of CMV usually doesn't have symptoms, we're really not sure what (if anything) caused my fever. As the infectious disease doctor said, it's possible my fever would have just gone away on its own in a few days. But as anyone with a cancer diagnosis knows, once you've had cancer, nothing is ever "nothing" again. So it's good that I went into the hospital. If nothing else, the copious IV fluids helped.

Although I initially felt a lot better after getting fluids, that didn't last the entire time I was in the hospital, and the exhaustion overcame me again. I tried to do some walking, but was hooked up to the IV pole almost my entire stay, and so I spent most of the last week "in bed." I feel like it. I'm home, and so happy to be home, but I feel like I have no strength and no stamina. I'm trying to gradually build back up, but I'm also very impatient.

Other things I learned at my appointment today include the fact that, while my blood counts were dropping in the hospital, they're starting to trend upwards now. Today I actually had the highest platelet level I remember EVER having: 152k. I am scheduled to have my next bone marrow biopsy on Thursday. This will be a big one--not only are they looking for evidence that my donor marrow is well established, they're going to do cytogenetics and hopefully my last remaining mutation (from before the transplant) is gone. If it is not, I'll be back on maintenance chemo, so if you want to send good vibes, send them for no mutations in my bone marrow!