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Some background.

Almost 12 years ago, at the age of 46, I was diagnosed with a blood cancer, one of three Myeloproliferative Neoplasms (MPNs): Polycythemia Vera (PV), Essential Thrombocythemia (ET), and Myelofibrosis (MF). The card I drew was PV, confirmed by blood work and the presence of a JAK2 mutation.

Because there's a twist in the plot, I won't get into too much about my PV experience. The highlights, however, are as follows:

As the result of a routine physical, my GP noticed that my blood counts were off. He sent me for a retest, which confirmed that something was askew. I was eventually seen at the PEI Cancer Treatment Centre by the only practicing hematologist at that time in Prince Edward Island (PEI), the small Canadian province on the east coast of Canada where I live. During our first meeting, he diagnosed PV, which of course, I'd never heard of. 

As he was now in charge of my PV treatment plan, he prescribed a twice daily oral chemo med - hydroxyurea (hydrea or HU) - along with once daily low dose ASA, and phlebotomies as needed (I could write another entire blog about my fear of needles, and how I learned to live with them, but nah).

Eventually, this hematologist left PEI, which meant that there was no longer anyone in the province who practiced his specialty. Fortunately, my treatment was placed in the hands of an internist in whom I had absolute confidence. 

And now, that twist I mentioned.

One night, I thought I was having a heart attack. The symptoms, however, disappeared, and I remembered reading that, sometimes when PV leads to MF, the patient's spleen enlarges and can cause pain. I brought my experience to my specialist, and he arranged a bone marrow aspiration and biopsy. 

When most of us hear that we're being sent for these procedures, we're curious about the associated pain. I know I was. In my experience, and this was done with only a numbing by injection of the small area in my back where an incision was made, it was truly painful -- a sharp, intrusive sting -- only for the very short duration of the time it took to insert the needle into my spine for the aspiration.

Though the biopsy portion of the procedure was a success, the aspiration was not. The specialist was unable to draw enough fluid. This in itself, I believe, was an indicator that my PV had become secondary MF; secondary, because its origins were in pre-existing PV, and I was led to believe that I now had MF because with this disease our bone marrow begins to turn into scar tissue, resulting in the lack of fluid. 

At least now I knew that I was dealing with a different blood cancer, and my treatment was turned over to a hematologist-oncologist who had recently begun treating patients in both New Brunswick and in PEI. 


  


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