It’s My Cancer & I’ll Cry If I Want To*
My journey as a cancer patient and survivor continues. Since this is a big part of my life, I will be devoting occasional posts on the subject. These essays will be highly personal accounts of my experiences, and I understand if this manifestation of my writing is off-putting to some people.
One thing I can say is that I will not be not focused on the mundane flesh and blood aspects of this experience, and my frame of mind is largely positive. Please don’t feel sorry for me.
*Headline is a riff on the Leslie Gore hit record from the sixties: substituting ‘cancer’ for ‘party.’ I know, it’s weird, but so am I.
I am grateful for the support of my family, friends along with being amazed at the good work being done by the doctors at UCSD. And I’m lucky enough to have decent health insurance.
I have been diagnosed with a third recurrence of cancer, centered in my throat area. Over the past month I’ve been biopsied and scanned. Yesterday I looked at the latest set of images with the oncologist and there’s no doubt about the nature of three small areas glowing bright yellow.
Strike three for this particular version of cancer is some serious business. Massive amounts of reconstruction (four hospital stays) following an operation to remove tumor version 2.0 dominated 2022 for me and, quite frankly, the prospect of more hospitalization was scarier than the cancer diagnosis.
Surgery is not an option this time around; there’s only so much cutting and pasting that can be done. I was already somewhat of a celebrity in plastic surgery circles, as images of the scarring were part of a presentation at a recent conference.
I’m likely (more imagining required) to undergo a couple of weeks of radiation as we head into spring, followed by a yet to be determined regimen of chemo and immunotherapy. Whether or not and what type of results remains unknown, since every human is different; DNA testing may play a role in the choice of therapies.
So there it is. No guarantees, but a path to relative normalcy exists. In the meantime, I actually feel good physically and am mentally prepared to face this challenge.
***
Now that I have a sense that there is a future, I have an announcement to make.
Unbeknownst to me, the internet platform I use to publish has started inserting requests for donations for us writers. I was initially embarrassed when pledges started showing up in my inbox, since my point from day one has been not to monetize my essays.
It’s not that I’m allergic to money; it’s just that there are so many other good causes out in the world and, after a lifetime of dealing with financial issues, I wasn’t inclined to divert my energies into dealing with the bureaucratic aspects of cash flow.
But since a few people are offering donations, here’s what I’ll do as of February 20:
Any contributions will be forwarded to Substack writers who are activists in their field or up and coming journalists.
I get a ton of Substack posts, but only continue with a few after a week or two of checking them out. “Unsubscribe” is how I manage my time to keep exploring various voices.
These authors impact my writing and views, and since I’m not able to personally do much to support them, I’ll start making the effort to refer some love their way.
For me, Substack could be the new Twitter, if and when they figure out a way of teasing readers into works overlapping their interests. As much as I dislike overseeing them, I can see comments (not enabled here) as a place for healthy dialogue, and expect I’ll open up the process for Words and Deeds as of February 20.
Thank you to each and every one of you for believing in me, even if we don’t always agree.
***
Finally, an episode from my social life–which often consists of doctor visits.
As part of their comprehensive care for cancer patients, UCSD enables services beyond curative measures or physical therapy. It’s a wonderful thing, a thing that enabled me to see a dentist who specialized in care for patients who sustained oral damage from radiation.
This time around, given that I have a history of depression and had plenty to be anxious about in recent days, I was referred to a psychiatrist. Anybody who’s ever had to negotiate the barriers that health insurance companies put up to keep from paying for mental health care knows this is a big deal.
I lost my vocal cords a decade ago during my first encounter with cancer, but for most of a decade had a prosthetic implant enabling a rudimentary form of speaking. Round two with the big C eliminated that possibility, and it’s been a couple of years since I’ve spoken.
I make do with a white board/dry erase kit/gestures, and have learned to use a software program on my Chromebook enabling text-to-speech. Both of these tools for communication are not very effective during a conversation, since there’s a gap timewise before a response to statements or questions comes from me. Trust me, most people don’t have the patience for it.
…So I go to see this shrink, and he obviously hasn’t done enough prep to understand that I can’t vocalize. I carry a postcard sized sign in my back pocket that says “I can’t speak” and “Hearing is okay” for these situations.
Unfortunately most people’s comprehension stops with the “can’t speak” part, and I get treated often as though they think I am deaf.
This shrink started out our session by raising his voice and dropping his facemask to ask me to read his lips. Ugh. I write on the white board ——> I am not deaf.
Think of it! Psychotherapy via yelling. It reminds me of the old Saturday Night Live bit where they presented news for the hearing impaired via an announcer shouting out headlines.
Once upon a time, this incident with the shrink would have made me a bit angry. Now I mostly find it amusing. It is, by the way, possible to experience talking therapy if accommodations are made and the therapist can be persuaded to wait for a response.
Unfortunately, my health insurance has balked at paying for this kind of therapy. They’d like me to call them on the phone to speak to somebody about it. And they want a separate consent form even after an HIPAA document is on file before anybody else can speak for me.
It’s good thing I have a sense of humor, because there are aspects of the healthcare system that are just downright stupid and cruel.
That’s it for today.
***
Ok, maybe one more thing…
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