Jay Lake (jaylake) wrote,
Jay Lake

[cancer] The sexuality of cancer

I've talked about almost every aspect of my cancer experience over the past 18 months or so since my excellent cancer adventure first began. The sole, and somewhat notable exception, has been the effects on my libido and sexual function. Those are critical issues, both to quality of life and to self-image. So, with a somewhat reddened face, I continue my ongoing efforts at clarity and honesty, this time in a subject where tact is improbable, and the silence is deafening.

One of the disclosures in the pre-op consent process for last year's surgery (partial colectomy, open incision) was centered around the risks of resultant sexual dysfunction. Options ranged from transient or persistent erectile dysfunction to complete loss of ability to orgasm. (Also including, oddly, internal orgasms wherein I would experience the hormonal and physical aspects of orgasm, but without ejaculate, which I believe flows into the bladder in such cases.) Much of this was a result of the proximity of the vagus nerve to the surgical site, but also the proximity of my genitalia themselves.

I had a lengthy discussion of the issue at the time with the two surgeons, but it revolved around, "oh, well" because the alternatives to surgery ranged from the ridiculous to the fatal. As it happens, I've never been especially orgasm-focused as a lover, beyond the baseline desire for such lovely sensations, because the processes of sex are at least as fascinating to me as the outcomes, so I figured I was ready for this.

Post-operatively, nothing worked for a long time. This was expected — pain, anaesthesia, opiates, surgical healing: these things are not a recipe for happy sexual functionality. I was able to orgasm intermittently within a month of surgery, but erectile dysfunction was a significant issue. The doctors told me to wait six months and see if I recovered pre-operative functionality.

As will come as a surprise to absolutely no one who's spent any time with me in person, I'm highly libidinous and powerfully sex-positive. Combine that with my essential sensualism and my strong novelty seeking behaviors, and you can see where my passions often take me. By two months after surgery, I was sexually active again. Things were pretty scrambled in terms of erectile function, but imagination, creativity and a thoughtful partner can make up for a lot of that. I have been and continue to be blessed with an abundance of all three. At six months, however, I was still experiencing consistent (but not absolute) erectile dysfunction. So I sought pharmaceutical assistance (names abbreviated to cut down on spam bait).

C—, as it happens, does absolutely nothing for me. I might as well be taking sugar pills. V— does not work precisely as advertised, but does in fact restore me to reasonable function for up to 48 hours or so, with full performance at expected intervals. My doctor wrote me a scrip for 20 V— a month, which would keep me pretty well supplied even on my busiest times, but my insurance carrier will only cover 5 per month. I can go out of pocket for the rest of the scrip, but it's damned expensive, about $17 per pill. (Even the covered cost nets out to $10 per pill, due to the stupid limitation on the number — a $50 co-pay regardless of the quantity.) This carrier will pay $100,000s unblinking for my cancer care, but won't cover a few $100 per month for restoration of my baseline quality of life.

I've been arguing with them all year. My final appeal recently ran out. My assertion that the standard of care should include restoring my quality of life is running up against an apparently puritanical view that no one needs to have sex more than five days a month. Not to put too fine a point on it, but calendula_witch and I enjoy each other's company very much, as often as possible. And that's not even taking into account other lifestyle opportunities.

So while I can indulge my passions and the passions of my partners freely, I cannot indulge them fully. This has been intensely frustrating, and more than a little irritating. In trying to wean myself from V—, I've had modest but not significant success. It's clearly in part psychological, because some situations will stimulate me far more than others. And we've managed to avoid getting into a cycle of denial, blame or guilt over my various failures in this department. But at the same time, sex has become a consistently touchy issue in ways it rarely was before the cancer.

Now I'm looking at new surgery, albeit much less severe than last year's as we do not expect open incision. Lighter anaethesia, much simpler surgical healing, nothing near the vagus nerve or my genitalia. Still, there's a decent sized lacuna in my sexual life coming up. Then the chemo I'm most likely to undergo will give me heavy metal poisoning (this is apparently a feature, not a bug) which will repress my libido and further impair my already chancy physical responses, and generate a huge gap, lasting more than half a year.

I don't talk about my sex life here on the blog, largely for reasons of the confidentiality of others, but I am a highly sexual being. Sex is a big part of my identity, a major passion of my heart, and significant pursuit into which I've put a lot of effort at becoming both good and fulfilling. Sex is almost as much fun as writing, and a damned sight more fun than pretty much anything else I do.

The blindly ravening beast that is cancer has stolen that away from me, in shreds and slices, and my insurance company has conspired with the cancer to keep me from being fully restored to myself. Now this second round is stealing even more of my sexuality. I resent this deeply, and find myself terribly frustrated.

As with all of it, I will march forward, because I have no alternatives. calendula_witch and all those close to me are being beautifully supportive, and I know that will continue. I just hate giving up any more of my sexuality. On the bad days, it feels as if I'm compromising my life away, one small surrender at a time.

On the good days, I still love, and make love, as madly passionate as ever I have.

Still, fuck cancer.

Tags: calendula, cancer, health, personal, sex

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