Deja Vu

Happy Memorial Day to you all! We hope you are enjoying the long weekend.

My road to recovery has been challenging since my last update. I feel like I’ve hit the wall at mile 18 of this marathon for a second time. The first time was last year when my red blood cell count crashed and both my achilles ruptured. This time my white blood cell count plummeted and my L3 vertebrae fractured. I took my first ambulance ride and spent four days in the hospital before the pain was sufficiently under control to go home. I now know what 10 on the pain scale means.
 

The vertebrae fracture occurred sort of spontaneously like the achilles ruptures a year ago. I sneezed reaching for something, heard a loud pop, and then collapsed to the floor — really. High dosages of Prednisone to treat GVHD last year weakened my tendons and this year reduced my bone density, leaving my vertebrae, the neurosurgeon says, brittle. My fracture occurred on Mother’s Day, a tortuous way out of cooking for the extended family!
 

UCSF had been experimenting with alternative medications to mediate the GVHD attack on my white blood cells while titrating me off Prednisone, which wasn’t working and was causing side effects that had forced me to scale back my hiking even before the fracture. The other medications also did not work to raise my white blood cell count. One drug, Ibrutinib, caused a severe toxic reaction, turning my forearms solid purple with bruises. While I was in the hospital, my white blood cell count dropped close to zero.
 

The good news to report is that a new drug I’ve started, Jakavi, has boosted my white blood cell count to nearly normal range! Jakavi is FDA-approved to treat GVHD that attacks organs, not my type that destroys blood cells, so we are relieved that it’s working so well, so fast. UCSF will continue to closely monitor my blood counts and side effects — fatigue, headaches and nausea, which are manageable.
 

I see the neurosurgeon again in early June. I am wearing a back brace whenever out of bed to prevent bending, lifting or twisting, spending 40% to 50% of my day prone to reduce the pressure on my vertebrae, and receiving in-home physical therapy. I am told that the fracture should take six to eight weeks to heal and to reset my goals to hiking and maybe biking because running presents too high of a risk of another fracture. For now, I am just taking short walks to the trail head to see two Northern Spotted Owls nesting with their babies.
 

We are vaccinated now and gathering, at last, with family and friends who also are vaccinated. As expected, testing confirmed that I did not develop detectable antibodies from the vaccine. Like other immune-compromised people, I need to continue to avoid crowds and wear a mask whenever I venture outside our bubble.
 

We appreciate your thoughts and support. You have helped us stay positive and strong through this marathon.


— Steve