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As 2023 comes to a close

There hasn’t been much information to share here lately, or at least it’s seemed that way. 

As predicted in an earlier post, friends have begun to pass away. Leo Cheverie was 60 when he died of cancer this past October, and although it’s standard practice to heap praise upon the deceased, Leo was truly one of a kind. He was a smart, thoughtful, compassionate individual who was involved in just about any social justice cause you can think of. The posthumous accolades such as the Leo Cheverie Cultural Connector Award (PEI Arts Awards) and the Leo Cheverie Activism Award (PEI Division of the Canadian Union of Public Employees (CUPE) ) support this. 


Leo and I would check in, whether through Messenger or by meeting for lunch, to share cancer stories and to generally commiserate. One thing we cancer people rarely let the rest of you know about is the fact that we dish about you. Yes, you. We talk about how you interact with us, how you respond (or don’t) to our cancer, whether you seem interested, awkward or dismissive. In the end, it’s just another way for us to support each other.


The no-holds-barred conversations I had with Leo only served to prove his humanity to me, something we rarely afford saints. In the end, though, he has left a legacy here in Prince Edward Island, but his death has also absolutely left a gap.  


On the MF front, I discovered that Thom Filicia, one of the cast members of the original “Queer Eye for the Straight Guy” TV series, had donated his stem cells to his brother, an MF patient, for a successful Stem Cell Transplant. In its wake, Filicia has joined forced with GSK, a pharmaceutical company, to create the Mapping Myelofibrosis website. Anything that raises awareness of this rare blood cancer, and that can possibly help in terms of a cure, information and support is welcome. 


Personally, I’d begun to rely more frequently on blood transfusions due to anemia caused by MF and the Jakafi I take to control the size of my spleen. Though I’ve only had four transfusions in total, the anemia was having a severe effect on my quality of life. So that I wouldn’t become transfusion dependant, my specialist has prescribed Cyclomen (danazol) in the hope that it will work to increase my red blood cell production. Although it is something that needs to be monitored regularly (for the time being I’ve been having weekly blood work at the Charlottetown Cancer Centre), it seems to be doing its job, and just this week my specialist doubled my dose from 100mg to 200mg. 


Mentally, I continue to be all over the place. For a period of time, I will go ahead and live my life like I’ve got forever. Then something will pop up, like a period of experiencing night sweats (it’s always just around my neck and shoulders), or a maddening itch that I just can’t otherwise explain, and I’ll be brought back down to earth. As I’ve discussed with others who’ve dealt with cancer, for many of us, it’s an anvil hanging over our heads, something that creeps into our psyches late at night, and is never — not really — ever completely absent. Despite this, it’s just something you have no choice but to live with. 


At my worst, or maybe at my most pragmatic, I sometimes wish for my MF to accelerate to its end point, mostly to get it over with. That might not be the most optimistic sentiment, but it’s an honest one. It’s also not something stated with bravado or self-pity. It just seems like something that is so… inevitable.  

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