You can call me SM, PhD, DSK.
That’s Doyenne of Sarcoma Kickassery, thank you.
Today my sarcoma oncologist conferred my sarcoma diploma and announced me a graduate.
I am overwhelmed, friends.
I’ve been seeing my sarcoma doc once a year for the past five years or so (after all the crazy hubbub that followed my initial diagnosis and treatment in 2011-2012). Given that I’ve also been seeing a separate oncologist in the breast clinic since 2015, the sarcoma visits were pretty short: Dr. M would ask if I had any questions or concerns, she’d do a quick examination, and I’d be on my way.
On today’s annual visit I asked Dr. M how much longer I should continue to see her. My CT scans (twice per year at this point) continue to look good,* as does my bloodwork.
Frankly, I wasn’t expecting her response.
She said, given the fact that it’s been nearly ten years without any sign of ULMS recurrence (a little more than 8 since my major surgeries, but still), plus her opinion that I’m unlikely to have a recurrence based on the overall evidence, plus the fact that I’m very well monitored on a regular basis because of my ongoing breast cancer treatment, she feels comfortable with the idea of concluding my sarcoma check-ups.
Holy shit. I’m so happy. And grateful. And a little nervous.** And amazed that I might be able to bring this particular chapter to a close.
She said one thing that made me especially emotional and proud.
“You made the hard choices, and they paid off.”
It’s true! I made some hard fucking choices! I have the scars, gastrointestinal problems, emotional and physical baggage, and changed relationships to prove it. (And the menopause. I can’t forget the menopause.)
As some of you know, I don’t buy in to the idea that “everything happens for a reason,” or, put another way, that such an illness is “part of God’s plan.” Nope. Shit happens in this world, and sometimes, as in my case, it’s just plain old, ugly, inescapable bad luck. We roll the dice every day. There’s a 2.8% chance we’re going to roll snake eyes.
For me, the most important part is that I chose how to respond to that bad luck. Some of those choices were horrible at the time. But they were good choices, based on evidence (shout out to all the people who were on my personal research team!) and, in the case of my decision to do IVF even though there was no clear medical guidance on whether it was safe for me or not, my need to do something that would prevent me from having a lifelong regret.
I therefore feel entirely justified in bestowing the DSK on myself. I earned it. (Paging John Houseman!)
Xo,
SM, PhD, DSK
*No caveats here! I just wanted to note an interesting point about this. Apparently some tumors never go away after treatment. They go “cold,” as my breast onc describes it. So the fact that I still have 3 small tumors in my liver doesn’t mean that there is still cancer in them. We can’t really know.
**Nervous, in part, because leiomyosarcoma is “a weird little beast,” as Dr. M put it. It can show up after a long period of dormancy. Also, it sometimes shows up in strange places, like a subcutaneous tumor on the scalp. She said that I shouldn’t worry about every little bump, but if something shows up, persists, is hard, and grows, I need to get it checked out. Don’t worry, dear reader–I’m unusually attentive to the vagaries of my body. I’ll know if something goes awry.
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