Category Archives: Blood Cancers

Jakafi to the Rescue

Myelofibrosis Treatment Banishes Behcet’s… Coincidence? I think Not About one month after my Autumn 2009 PV (polycythemia vera) diagnosis, I started getting unexplainable lesions in most inconvenient locations (I’ve shared this over a year ago). After several months of excluding many possibilities, it was diagnosed as “Behcet’s Disease/Syndrome” or “Probably Behcet’s” in March, 2010.  I… Read More »

I Blame the Hemoglobin

There seems to be an inverse relationship between my Hemoglobin level and Anxiety level. Hemoglobin is a protein in the red blood cell that carries oxygen through the body. As the hemoglobin decreases, I become more easily annoyed — with myself and everyone around me. I get the anemia double-whammy from the alpha thalassemia trait (red cells are… Read More »

Beating the Odds Starts with a Swab

When I began this journey 3 months ago, I was pretty confident that one of my four siblings would be my match (a 10 for 10 match of HLA-types; it’s not about matching blood type).  Each had a 25% chance, so wouldn’t 1 of the 4 have to match?   That’s not how probabilities work, I learned. … Read More »

Blood Stem Cell Transplants in the 21st Century

When I first heard about bone marrow transplants, I envisioned the donor getting drilled in the hips for bone marrow extraction (like the bone marrow biopsy and aspiration) and then a surgeon drilling into my large bones to implant the donor marrow. I am happy to say that I was way wrong!In most cases, blood… Read More »

How We Chose the Transplant Center for Me

After an absolutely wonderful escape to Sicily, Robert and I returned home ready to tackle the next big adventure.  Where should I go for the stem cell transplant?  Who will be my donor? Robert, Mom, and I met with Dr. Lawrence Morris of Bone and Marrow Transplant Group of Georgia in Atlanta. This group is… Read More »

These Tired Bones Need a Makeover

After several days of tests and consultations with experts at Mayo Clinic Scottsdale, I returned home with a worse-than-expected diagnosis. Here’s the quickie Bad News/Good News version:My bone marrow has gone from over-achievement to under-achievement. Instead of producing too many red blood cells, it is now in the “spent phase” and is not producing enough… Read More »