… at root all people at root are time optimists. We always think there’s enough time to do things with other people. Time to say things to them. And then something happens and then we stand there holding on to words like “if.”
I came across this passage in a book by Fredrik Backman, A Man Called Ove. (The book was a bit of a slog, but well worth the read.) I think it is very true – there will always be time to… Time and again, time shows us that it is more of a finite resource than we care to admit, not the limitless well we wish it to be.
Three years ago, when I first heard that I might be progressing towards myelofibrosis, I looked it up in the Merck medical manual and was rather upset at what I read. Those diagnosed with myelofibrosis had a life expectancy listed at between 1 to 5 years. When I next saw my hematologist (at the time every six months) I asked him directly: was it really true that I might be looking at maybe only having one to five years left? He told me not to worry, there were new treatments that were showing good test results and a better understanding of the disorder were showing new promise of better treatments to come. And besides, a positive diagnosis had not been made.
I have been living with a related myeloproliferative disorder, Essential Thrombocythemia for more than ten years. Other than seeing the hematologist on a regular basis and having to go in for blood samples, it did not appear to have any effect on how I lived. Buried away was the chance that that the ET could eventually progress into a more serious problem, possibly leukemia, but this was listed at less than ten percent. And pushing the odds even more in my favour was I did not have a gene mutation associated with the development of further complications.
I was a time optimist. I was looking forward to living the years ahead that a reasonably healthy sixty-year-old might expect to enjoy.
And then something happened.
In the fall of 2014 I was cutting my father-in-law’s lawn when I noticed a general lack of energy and a ripping pain from my left shoulder to hip every time I took a breath. Long story short, this lead to a number of tests that finally confirmed that I had developed primary myelofibosis. With a dash of chronic lymphocytic leukemia (CLL) in the background. As the symptoms of the PM seemed to be of immediate concern, it was decided to treat the myelofibrosis first. It only took two and a half months to get the medication Jakavi released for my use. Just beginning the third week with this medication and by golly, it seems to be working as advertised.
There may not be as much time as we had hoped for but I remain a time optimist. There is a lot of living that my wife and I look forward to.
Myelo and Me 