Two years ago today I was being prepped for cancer surgery, completely unsure of the outcome. Possible complications during surgery due to the condition itself - plus the usual anesthesiologist warnings - had me feeling fairly certain things wouldn’t go my way, and I wrote a letter expressing my appreciation to our community. It was something of a ‘goodbye letter’, as well, because I wasn’t feeling very optimistic at the time. In something of a ‘silver lining’, my cancer proved to be mostly inoperable - something my surgeon could only determine once they’d opened me up in the operating room. Because they abandoned the plan to operate on my tumor itself and on the lesions on my liver, most of the risk was negated, and my recovery time was faster than expected.
That left me with a rare cancer with one known treatment - a monthly injection administered at the infusion center - and a prognosis that is indeterminate, to say the least. A ‘second opinion’ confirmed that I was on the only course of treatment available to me, and I’ve settled in for monthly shots, quarterly scans, and hoping for the best.
I get a lot of requests for updates. The truth is, there’s not much to share much of the time. Many cancers are the same: go through treatment, get a scan, interpret the scan results, and continue the process. There is no cure for cancer that has spread to the lymph nodes, and short of a liver transplant, which only temporarily slows the kind of cancer I have, once cancer has spread to your liver it’s there and growing, no matter what you do. Stage IV is stage IV - it doesn’t decrease to stage III, and it doesn’t go away. Slow is the goal. So far, as far as metastasis goes, I’m satisfied with how things are progressing.
I hope to see a specialist in the Seattle area who is considered an expert in the particular kind of cancer I have. I may incorporate that into a road trip to the west coast, eventually. But where I bucket-list-road-tripped all the way from New York to Key West in January, and drove the Blue Ridge Mountains in April, the heat wave of the summer brought with it worsening symptoms, especially fatigue and exhaustion. CAPCON almost didn’t happen, and many of the weekends I’d hoped to spend hosting Luvs Boat visitors have been spent in bed, instead. (My hope is a specialist might be able to help improve that side of this).
Two pieces of good news: some very, very introductory-level studies have shown a new classification of drug that appears to make short work on cancerous tumors; and, a new medical treatment for Carcinoid syndrome is being tested. Both of these could be years away, but could be introduced in my lifetime. Hopeful for that!
During these months that things haven’t gone as well for me I’ve poured myself into my work in the ABDL world, doing polls and Twitter and deep-diving into survey data from previous surveys I’ve done. My goals are to publish an explainer for ABDL that is detailed enough for our community but simple enough for those outside of it - spouses, family members, and significant others who don’t understand. I’ve spent years gathering survey data, Q&A’s, and other input, and it’s time to use that to the fullest. I look forward to sharing more with you…
Summer is almost over, fall is coming, and I’m hoping that the cool weather will bring increased energy and decreased symptoms. In the meantime, I want to thank every member of our community who have taken the time to reach out, no matter where it was: at CAPCON, on my Fetlife feed, in an email or direct message - anywhere. Realizing that there are people in a community who care about you and truly want to know how you’re doing feels amazing and, no matter how I’m feeling, makes me feel better every time. So thank you for that.
I belong to several Facebook groups for my specific cancer, and I read so many people feel like they don’t have much of a support network. I’ve had dozens, if not hundreds, of inquiries since I went through surgery two years ago. All of that, plus a case of diapers in the mail and donations toward my road trips - this community has reminded me time and time again that my support network is strong af. So thank you for that.
I feel like fall is going to tell whether things being worse for me was truly the heat or maybe just disease progression. I am hopeful - think positive, right? - that it’s the former. Either way, I wanted to give my mailing list subscribers, blog readers, and friends an update. I’ll have more for you soon.
Your friend,
Cwis
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Also: I’ve had a shit ton of requests for more information on the ‘DNI List’ that I referenced in my last mailing list blast. I’ll have more on that for you soon… that warrants an entry all on its own.
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