Six Month Post-SCT Assessment Gives Me Hope
February 3, 2014: The news is good. My Dear Donor’s hematapoietic (blood forming) stem cells are engrafted in my bones. My bone marrow is not hard and fibrotic like it was six months ago. We hope it once again becomes a gracious host for the marrow and stem cells. Dear Donor’s White Cells and Platelets are performing beautifully. His Red Cells, however, are being challenged by the Type A antibodies in my system.
You know me, I’ve got to have a SMART goal. Using the Performance Challenge process I worked on with other CDC Executive Directors at the “Achieving Excellence in Community Development” executive program at the Kennedy School of Government, I’ve come up with this:
My donor’s red cells are fully-functional and produce adequate, life-sustaining RBCs by August 1, 2014.
Battle of the Blood Types – Ninja Style
My red blood type is “B negative” (2% of the population) and I’ve received “O negative” red blood cell transfusions for the past year to keep me going. My RBCs have “A antigens” and my body developed “A antibodies” to attack such foreign invaders. Since blood type is not a deal breaker for a stem cell transplant, I haven’t been worried. But my concern has grown as this process seems to go on and on. What if my antibodies wear out Dear Donor’s pre-cursor red cells?
The doc explained that my enlarged spleen may still be producing some RBCs (as it had when my marrow failed) AND the antibodies still circulate through the body. It just takes time and I must be patient. We’ve still got two more protocols to use if Dear Donor’s RBCs don’t take over in the next 6 weeks.
That word… “patience” keeps recurring in this journey.
We’ve still got two more protocols to use if Dear Donor’s RBCs don’t take over in the next 6 weeks of lower hematocrit.
One: Rituxan, a weekly chemo that will kill off my B cells. This is used for B-cell lymphoma, so we know it works. That’s a four week regimen that should show results then or shortly thereafter.
Two: If that doesn’t work, I can get my plasma washed to get rid of the anti-bodies. It’s a time consuming process of apheresis — all my blood is drawn out, the plasma is washed of antibodies, and all the blood products are returned in a closed loop.
Bottom line: the conversion WILL happen. It’s just frustrating when there is nothing I can do to expedite it. Complete control is a comfortable illusion.
The news from Dr. Morris did so much more than release me from the last six months of relative isolation. For the first time in almost seven YEARS, I got hope that my remaining years may be relatively healthy and pain-free.
Before this appointment, I didn’t even dare to dream that this would be possible. Positive indications abound: the engraftment is working, my JAK-2 gene mutation is gone, the auto-immune disease (Behcet’s) is gone, and my bone marrow is healing.
The emotional shift from “surviving” to “thriving” occurs through hope. I always believed this transplant would save my life. My hopes evolve as my journey takes its twists and turns. What I dared not hope was that almost full health could return and I would be able to see more, do more, be more in the world. And this is now my new hope: I will be a vital force for love and healing.
Only now am I realizing the toll living with invisible chronic illnesses took on my perceptions of living. “Chronic illness” means that the disease state can be “managed” but not “cured.” I struggled with migraines, anemia, polycythemia vera, Behcet’s Disease, and then myelofibrosis. Those are the disease labels. The symptoms were sometimes debilitating and the side effects of the treatments were sometimes as bad as the symptoms. (Remember what prednisone does to me!) Feeling “not quite right” over time is wearing physically, psychologically, emotionally, and spiritually.