Things had been going extremely smoothly and uneventful since my bone marrow transplant in May, making it easy to procrastinate writing a post here on my blog with updates. No news is good news, right? Well unfortunately that’s changed.
The stem cell transplant went as expected including me spending most of May in the hospital as the doctors waited for my donor immune system to take root and start producing new white blood cells. There were side effects such as a sore mouth (you’d be surprised how much healing your mouth is doing on a regular basis) that required being hooked up to intravenous fluids and nutrients, but overall no real surprises. Just my body being put through the ringer.
I was discharged near the end of May and moved back in with my amazing mom who took over 3 months off work to be my caregiver. This is because I required 24/7 supervision in the case of complications such as a fever or graft-versus-host disease (GvHD). I was also extremely fatigued early on, feeling like I had done a full workout despite just sitting on the couch all day. My body was working hard on the inside!
Things improved steadily until the end of August when I started feeling weaker again. I was more easily getting out of breath and my heart would race more than usual. I had hoped it was just some GvHD or something as getting a little bit of it is actually a good sign as it means the new immune system is strong.
Unfortunately when they did the blood lab work at my next weekly clinic visit, they detected a high white blood cell count which signaled a return of my leukemia. Worse, further testing revealed that a mutation had occurred in the leukemia meaning that the medication I had been taking before my transplant was no longer as effective at treating my Philadelphia chromosome–positive (Ph+) acute lymphoblastic leukemia (ALL).
The relapse resulted in me being readmitted to the hospital for nearly two weeks earlier this month while they got the leukemia in check using the old medication (better than nothing) and dealt with some complications such as a bit of bleeding in my lungs.
Thankfully there’s a different medication that I’m now taking that is designed specifically for treating leukemia with this mutation. The crazy thing is that it apparently costs $65,000 a month according to my pharmacist but luckily my insurance knocks it down to only a $10 copay. Phew!
My understanding is that the hope is that with this new medication, my new immune system will be able to battle back and kill off the leukemia, putting me back into remission and back on the road to being considered cured. Initial blood labs indicate that this is trending in the right direction as my white blood cell count has dropped back to normal levels but I’ll know more over the coming weeks as I’ve only been on this new medication for less than a week.
If the medication isn’t as effective as desired, I’m told such things as getting a stem cell booster from my previous donor or even a transplant from a new donor could be on the table. Then there’s even the stuff that I don’t want to think about. For now though, it’s just a wait and see.
One good piece of news is despite being on an absolute ton of different medications, I’m actually feeling pretty good. I’m still physically weak due to extended hospital stays but mentally I’m pretty much all there (well, as much as before that is, heh). I’ve been slowly getting back into writing code in preparation for returning to work next month or so, assuming I don’t need to get admitted back into the hospital yet again.
The big thing that has kept me going through all of this though has been the amazing support and love from both my friends and coworkers. It really has helped keep my spirits up and I hope all of them know how much it has meant to me!
Great Friends Visiting Me In The Hospital Earlier This Month