About Me

I feel fine.  I look fine.  Then how am I?  I don’t know, the doctor has to tell me. I would get more fatigued. But I don’t get infections and I don’t bruise a lot. Every time I go for my blood tests, I wait to see how I am doing.  I do know that my disease isn’t a good one to have.  How long have I had it?  Diagnosed January 2009.  But that was after monitoring it for 2 years as a side effect of my autoimmune disease (connective tissue disorder).  Then a major drop in my WBC and platelets and it was time to proceed with more diagnostic test.  A bone marrow test.  OK.  I know I pass out when I donate blood,  laying down even, and as a medical technologist in a hematology lab for 17 years , I was lightheaded assisting with bone marrow biopsies in the office. Not a good track record.  So, I agreed to proceed as long as I was sedated and all went well.

Just to backtrack.  Yes, I worked in a hematology / oncolgy lab as a Medical Technologist in charge of specimen collection and running basic hematology and chemistry tests.  I could look at a bone marrow and identify abnormal cells.  I could read the biopsy interpretation.  I knew enough to potentially be my own worst enemy.  But, after almost as many years out of the lab,   disease names complicated and I couldn’t even read the 10 page DNA interpretations.  So, I found it easy to turn the diagnosis and treatment to the specialists.  I could use my knowledge to ask questions about treatment and especially bone marrow transplantation.  Having this background, I can’t tell you how many times I asked myself  ” How could I ever get this disease?”  I am totally amazed I acquired a bone marrow disorder.  Now what to do with it.

I was 62 years old. Fortunately they perform BMT on the ‘older’ patient now! My hematologist made the appointment with the closest transplant center which luckily was in my state. Review of my history ( maybe only a 1″ folder at the time) qualifies that I was a candidate for a transplant. The chemo, Vidaza, which I had been receiving seemed to stop working after 5 months, but kept my WBC and platelets at a life sustaining level. But I would soon need transfusions and eventually I would convert to AML.

We decided to proceed with possible family donor match, which wasn’t successful. So, the transplant center took over and matched me with possible donors from the marrow.org group.
I have 2 possible matches, one 9 of 10 match and another 8 of 10 match.

That’s where I am now. I have more than 5 blasts and with 2 partial matches, my protocol is established. After a last bone marrow tomorrow to establish my baseline blast count, I will enter the hospital and begin the treatment.

Every time I get new information about my disease, I have my typical meltdown. It takes about 24 hours to regroup and pick myself up and try to dance again. Sometimes the tears break through at unexpected times. That’s ok. I keep dancing in the rain.