Hope = Reasonable Expectations

By | February 12, 2014

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

The antigens are attached to the red cells. The antibodies float through the circulatory system.

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.

HopeThe Power of Hope

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.

When illness is invisible, it is both good and bad. It is good when you want/need to be as normal as possible. Invisible illness is extremely frustrating when dealing with the expectations of others. Pacing oneself is a constant challenge. “But you don’t LOOK sick” is a common refrain heard from family, friends, co-workers, and even medical personnel. Said (or heard) with a tone of disbelief, the divide between me and the (perhaps) well-meaning person widens.  I probably unintentionally hurt people’s feelings with similar comments when I was healthy. Now, I get it. And I want to help others with my new-found health.
Future Think: Oh, the Possibilities!
Now that I see liberation from a body wrought with maladies, I ponder the age-old question: what shall I DO with the rest of my life?
I always wanted to make the world a better place in a big way. How big and in what way?
In my 20s, 30s, and 40s, I wanted to eradicate homelessness, racial and gender discrimination, predatory lending, and violence, particularly sexual assault and sexual abuse.  I worked professionally and as a volunteer on these issues, both in advocacy for public awareness and system changes and in direct service to those affected. My biggest disappointment is the very little impact I made on the big picture of these man-made problems. My biggest reward came from seeing individuals survive and thrive despite one or more of these challenges. I derived a large part of my self-worth knowing I played a small, often invisible, role in their success.
My 40s decade is teaching me so much through the School of Hard Knocks. I was working in the affordable and low-income end of the housing market during the housing bust and lending crisis while my body was silently, steadily breaking down from the inside.  Systems failed. Denial. Blame games. Finger pointing. Helplessness.  I experienced it at work and in my health.  None of those things improved outcomes. I don’t have the patience or time for that $hit anymore. 
So today, my mind and heart are open to the possibilities. I know this for sure: I will do my best to share humor and hope with people fighting illness (and their care givers).  I will continue to ask people to donate blood products. I will continue to swab cheeks and get more people to join the National Marrow Donor Registry.  Will you join me?


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