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Four Fun Facts That Have Emerged Since My Myelofibrosis Diagnosis

Updated: Mar 15


The following is a humorous essay I posted to my MF support group on Facebook as a means to inject some levity into this freaking hellish experience that all group members face daily. As my Facebook account was hacked so badly a few months ago that it was entirely destroyed, I'm going to keep a copy of these posts here on my blog for safekeeping, although this site could blow at any time, as well. Regardless, you don't have to be a miserable MF patient to get the jokes. At least I don't think you do. You decide! (The following was written a year after my diagnosis. In May 2024, it will be two years.)


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To mark the anniversary of literally the worst conversation between a doctor and patient in recent medical history, let's look at how I did in my first year with the exciting diagnosis of myelofibrosis (MF), the boutique cancer that afflicts just 17,000 Americans each year! (And no, that's not new cases each year. That's always the grand total. Wow!)


A portrait in pastels in the Covid Journal.

It began with the MPN specialist not mentioning that I should bring someone with me to the appointment where he would tell me that I had an incurable bone marrow cancer along with three years left to live. What a strong start! Let's review...


1) My new MPN doctor at Cornell Weill says that my MF was possibly caused by a chemical exposure in my youth. Since three of my cousins are also currently battling various cancers, I can only assume that being raised in bucolic Newark, New Jersey was the culprit, a place where everyone had three square feet of lawn in their front yard, which we were not allowed to play on. Instead, we played on the concrete down by the bridge that had that green goo underneath. Yay, chemicals!


2) In the last year, my hair has grown in kinky curly on one side of my head and straight on the other. It's bizarre. This?...from bone marrow cancer? It used to be wavy all over, but now I have to consider whether I should perm one half of my hair to match the other half. But of course that would expose me to even more chemicals, possibly creating yet another rare and incurable cancer.   However, in the interest of symmetry, beauty and vanity, it might be worth it. Much to consider.


3) I actually dated someone this year who I met on a cancer dating site, of all places. After three months, he broke up with me because my apartment was "too messy." He should have seen my place in my 20s! In truth, my apartment is a cuddly, colorful, lived-in home, unlike his, which looked like a funeral parlor. Walking into his place made me wonder what time the viewing would begin. The only things missing were the body and coffin, which frankly cut a little too close to home considering we both had incurable cancers. But it was fun while it lasted.


4) In additional hair news, the horrendous ringworm infection that I had in my scalp about ten years ago has returned. Back then, I volunteered at the local animal shelter, completely forgetting that hydroxyurea was an immunosuppressant. Literally one side of my hair completely fell out at the root from the fungus (the side that is suddenly curly, strangely enough), and my scalp, face and upper body were all covered in sores for weeks.


If I'd had a stem cell transplant, this new recurrence might be deemed Graft Versus Host Disease, which can happen when the body rejects the new stem cells. (This horrendous disease can affect any and all systems within the body, sometimes all at once.) But I am still SCT free, so I'm  dubbing this new outbreak as Host Versus Host Disease, whereby my self-destructive tendencies are now manifesting in my scalp, but without the sex, drugs, and rock and roll of my youth, making it all a much less fun experience.


Okay, so that's a wrap for today! Feel free to add to the list with your own cancer adventures in the past year. Or are you still staring into space in shock? :)


-end-


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