I had a bone marrow biopsy done on Tuesday and the results came back today saying that the current chemotherapy treatment hasn’t been as effective as hoped. I came into the hospital at about 95% infection and my oncologist had hoped to see it down to as low as 5% now (they’re aggressively treating it) but unfortunately it’s still around 50%.
While not good news, it’s not really bad news either. It’s just news and means a change in chemo regiment. Rather than my weekly chemo treatments, I’ll be getting different chemo drugs starting tomorrow for 3 days and then mostly nothing for 3 weeks. These new drugs are stronger and have more potential side effects but like before, the nurses can preemptively counter and monitor those.
Unfortunately this also means at least an additional week in the hospital on top of the two weeks I already had to go. That’s probably the part that sucks the most honestly. It sucks being cooped up in the hospital, even with Netflix and video games. The food is fine, but I’m getting sick of eating the same things and there’s rules about outside foods due to risk of infection.
One day at a time though. 🙂
Today marks the 21st day of being in the hospital for leukemia. I’m feeling much better than that week before I checked into the ER but the weekly chemo drugs they give me can really zap my energy. Thankfully they pre-drug me to counter the effects, but there’s only so much you can do to keep yourself busy.
I’ve been watching lots of TV and thanks to about 15 amazing friends, I have a gaming laptop and HTC Vive VR headset to keep me busy when I have the energy and mental togetherness.
Lots of awesome friends and family have been making sure I have everything I need, so really it’s just waiting game based on test results. If all goes well, I could be getting out of here in a little more than 2 weeks! Fingers crossed.
Leukemia. Certainly not one of the words you expect to hear from your doctor when he’s calling about blood test results and telling you to get to the ER.
I hadn’t been feeling great since about October 10th — no appetite, a light fever of about 100F, and was easily getting out of breathe due to light physical exertion. But I also wasn’t stuck in bed or on the couch the whole time, so I figured I was just fighting some cold or flu.
After over a week of not feeling great though, I decided to see my regular doctor this past Tuesday the 18th. He had bloodwork done that morning and called me late that evening with the results, telling me to get to the ER immediately. I believe he said a normal white blood cell count while fighting an infection might be something like 12,000 while mine was 94,000 — the highest he had ever seen in a patient. There were also immature white blood cells in my blood stream and other signs of serious trouble.
Now, after having had lots of tests done, including a fairly painful bone marrow biopsy, it’s confirmed that it’s leukemia, specifically acute lymphoblastic leukemia. I start chemo today and I’ll be stuck in the hospital for 4-6 weeks. They say most people actually start to feel better despite the drugs although I will eventually be losing all of my hair. It’ll grow back, but that’s going to be quite the experience.
My understanding is once I get out of the hospital, I’ll still be coming here a few times a week for about 6 months for further care and it’ll be possible that I’m feeling well enough to both drive myself and go back to work. Even after that it’ll be another 3 years of treatment.
The details are of course still a bit fuzzy since it’s early on and more tests still need to come back, but they seem very optimistic about my long term chances.
It’s been pretty surreal to go from feeling perfectly normal to starting chemo in a period of less than 2 weeks.
This is going to be quite the journey…