I underwent a bone marrow aspiration and biopsy today. It’s never a pleasant or pain-free test, especially when performed without sedation.  It also gets harder as time goes by because scar tissue builds up with each test that takes place.

The good news is there continues to be no sign of a relapse of the AML leukemia.  Preliminary results show blasts of 2% which are well within normal limits.  I will receive the flow cytometry results and other detailed reports in about a week.  Mary Pat and I will be keeping our fingers crossed between now and then.

I’m finally making progress on the ITP front.  My platelets are now at 192k and that’s more than a week after my Promacta dose was cut in half to 25mg per day.  Dr. C has instructed me to cut the dose in half yet again to 12.5 mg per day.  The object is to see whether my immune system has stopped attacking my platelets.  If the count remains steady or continues rising, it will be a sign that I am in remission from ITP.  That would be great news if it comes to pass.

The are only three areas in which I am not making progress.  My ocular GvHD is not getting better.  I am still not producing tears. Because my GvHD is now considered chronic, it is unlikely the condition will improve.  It is incredibly painful to read more than a few pages or to work on the computer for more than a few minutes.  I am wearing glass scleral lenses to protect my corneas from scarring but the whites of my eyes and my eyelids get very dry and painful when I try to read or work on the computer.  I flew from Naples to Houston for my quarterly tests and the air was so dry on the plane, my eyes were blood red by the time I got to Houston.  Mary Pat has been a good sport and has been reading news articles to me and has ordered audio books for me.

I am also not making progress in battling chemo brain.  Short term memory is a real problem for me.  Mary Pat does her best to remind me about important events and details that I can’t seem to remember.  It is frustrating and often discouraging.

I will also be immunosuppressed for the foreseeable future because I will be taking the anti-rejection drug tacrolimus.  Dr. C instructed me to stay within a 30 minute drive of a major hospital just in case I am exposed to a bacteria or virus that causes a high fever and that could become systemic if not immediately diagnosed and treated.  Travel outside of the country or to rural areas in the U.S is off the table for the foreseeable future.  That means I will be limited to major cities in the U.S. which is ok.  It just limits where I can go and what I can do.

Mary Pat shared with me a Washington Post article about a mother who was reading about a 13 year-old patient who died of AML leukemia without anyone knowing he had the disease.  Out of curiosity, this mother did a Google search of AML symptoms.  To her horror, she learned that her daughter had the symptoms of AML.  She rushed her child to the doctor and learned that her daughter did, in fact, have AML leukemia.  Fortunately, the daughter’s disease was caught in its early stages.  You can read the amazing details in this article.

In the meantime, onward and upward folks.  Happiness and good health to all of you.

 

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