After 23 days living in the hospital I’m happy to report my bone marrow transplant is looking good, and I’m free to continue recovering at home! I’m not going to sugar coat it: this ordeal was rough. However, I planned and prepared well for it, had a lot of fantastic support along the way, and I feel great about how well everything went! It couldn’t feel more amazing to finally be home again. The air conditioning, my couch, my TV, my pillow, my high-speed internet! It’s great to be back.
For those of you just tuning in, I just finished an autologous bone marrow transplant to treat a condition where I make abnormal cancer-causing white blood cells. To do this some stem cells were collected and frozen, then strong chemotherapy was used to kill all of my bone marrow (where blood cells are made) to the point my body could no longer make any blood. During this time my white blood cell count went to zero, and I required blood infusions to keep me alive (thanks all you blood donors out there!). I was then infused with stem cells that were able to start growing new bone marrow. I have a brand new immune system now (just like when I was a baby) and it will continue to grow over the next few months, but I have to keep it safe by wearing a mask and limiting my exposure with other people while it matures.
I made an infographic to show my bloodwork during transplant. What, you didn’t think I’d try to data mine stuff from my procedure? In the bone marrow transplant world, stem cell infusion (transplant day) is what everything is centered around. I was infused with strong chemotherapy multiple times a day from days -6 to -1 to kill all my blood-producing bone marrow. Day zero I was infused with previously-collected stem cells, and celebrated a new birthday for my immune system. Since the old bone marrow was dead and not producing any white blood cells, my circulating blood cells slowly dropped off until they reached zero. Note that healthy adults have a white blood cell count of 5-10 (thousand/µL). It was a scary feeling on day +5 knowing that I had a white blood cell count of zero! The bone marrow transplant floor is largely sealed and isolated, visitation was is highly restricted, and I was on multiple antibiotics, antifungals, and antiviral medicines to get me through it. On day +9 I got the first hint that the transplant was working, as my white blood cells were just barely detectable. This confirmed that stem cells had matured into white-blood-cell-producing bone marrow (engraftment), and as my levels climbed I felt better and better.
Now that the core of my bone marrow transplant procedure is over, I don’t plan to continue updating this web page regularly. The procedure isn’t a sure bet at curing my disease, but it’s the best shot I’ve got, so I’m just going to wait it out and take the best care of my body I can and hope for the best. There’s a chance I could need additional treatment some day (CAR-T immunotherapy, an allogeneic bone marrow transplant from another person as a donor, or additional chemotherapy) but for now I’m taking it easy, and if this page remains dormant that means I’m living a normal life!
Treating peripheral T-cell lymphoma with an autologous bone marrow transplant is sort of like the immunological version of fixing a buggy computer by turning it off and on again.
Thanks to all the friends and family that supported me during my treatments both locally and from afar. This experience was challenging but doable, and I attribute a lot of my success to your support and encouragement. I hope I won’t need any more serious treatments from here, but even if I do I know I’m prepared! The whole team at the UF Health Bone Marrow Transplant Unit was amazing too, and I couldn’t be more grateful and impressed with the awesome treatment I got along the way.
Update: one week later…
After a week recovering at home I’m continuing to feel better by the day! I still fatigue easily and spend much of my day resting on the couch, but I’m starting to get little bursts of energy that I’m able to use to do things I enjoy (like work on little hardware and software projects I thought of while in the hospital). It will probably be several weeks before I’m able to return to 100%, but in the mean time things are going well and I am so happy to be back at home! I anticipate my hair will start to grow back in a few weeks…