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Jay Lake
Date: 2009-11-04 15:03
Subject: [cancer] The sexuality of cancer
Security: Public
Tags:calendula, cancer, health, personal, sex
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.

Post A Comment | 20 Comments | | Flag | Link

User: zellandyne
Date: 2009-11-04 23:11 (UTC)
Subject: (no subject)
*love* *hug*
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Oz Whiston writing as Oz Drummond
User: birdhousefrog
Date: 2009-11-04 23:17 (UTC)
Subject: (no subject)
I have a great deal of respect for what it took to post this. It's a side of the whole mess that is not usually discussed, yet it's damned important. Thank you.

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User: cathshaffer
Date: 2009-11-05 01:58 (UTC)
Subject: (no subject)
Ditto. This is new information and perspective for me. Thanks! I do hope you can afford the meds OOP, so at least the insurance company can be unfairly stealing your money, instead of unfairly destroying your quality of life.
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User: sonyamsipes
Date: 2009-11-04 23:29 (UTC)
Subject: (no subject)
That took guts, Jay. Thanks for the honesty.
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The NewroticGirl
User: newroticgirl
Date: 2009-11-05 00:09 (UTC)
Subject: (no subject)
You are so ... brave? That's the best word I can come up with... for baring all throughout this. I am in awe of you for so many reasons... but I think your honesty is #1.
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Elf M. Sternberg
User: elfs
Date: 2009-11-05 00:25 (UTC)
Subject: (no subject)
Thanks for that, Jay. I suspect your fast-forward-looking life meant this didn't take courage so much as patience for the right time to say it all, but you said it well.

And I hear ya on the price of Vitamin V. Oy.
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User: hani
Date: 2009-11-05 01:26 (UTC)
Subject: (no subject)
Thank you for writing this entry and being really honest about it.
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Somewhat Bent: Kiss
User: ladyallyn
Date: 2009-11-05 01:35 (UTC)
Subject: (no subject)
You RAWK! In so many ways and for many reasons. There are probably more who can relate to what you're going through than you realize -- even among your friends and acquaintances. A bit of creativity, some imagination, and if all else fails judicious use of power tools made the elements of one of my most memorable lovers.
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Rose Fox
User: rosefox
Date: 2009-11-05 02:14 (UTC)
Subject: (no subject)
On the bright side, during those months of enforced inactivity, you can still refill that prescription every thirty days and stockpile some of the V--.

I'm sorry this is so hard on you.
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Allison Lonsdale
User: caprine
Date: 2009-11-05 02:16 (UTC)
Subject: (no subject)
Hang in there.
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User: zhaneel69
Date: 2009-11-05 02:26 (UTC)
Subject: (no subject)
Your honesty is eye-opening and heart-wrenching.

I know you've been chroncaling this on your blog, but have you considered doing a serious nonfiction book on 'The Life and Times of Fuck Cancer'?

I do bookmark these on the horrid chance that someone else I know will benefit from your experience and shared words.
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User: joycemocha
Date: 2009-11-05 03:42 (UTC)
Subject: (no subject)
Very positive and well written.

This is a passage of your life, and hopefully one that you will transit through with grace and a minimum of obstruction, both from the insurance company and from surgery/chemo/etc.

And you never know. You might get surprised by the results.

Other things can have other effects. They are surmountable. BTDT.

Meanwhile, I am thinking those good and positive thoughts for you (and yeah, that includes a few decades of the rosary, even though I know you don't believe it--it works for me as a focus of positive thoughts).
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User: muneraven
Date: 2009-11-05 04:09 (UTC)
Subject: Thank you
It wasn't TMI. It was well written and honest and it will help other people.
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Cliff: Mordred armor
User: obadiah
Date: 2009-11-05 06:51 (UTC)
Subject: (no subject)
Keyword:Mordred armor

And you're awesome for posting this (in addition to other reasons). You're one brave dude.
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User: (Anonymous)
Date: 2009-11-05 09:13 (UTC)
Subject: (no subject)
I've commented elsewhere, but would like to continue, here ...

Honesty is always good. Too many times we go into things like surgery trusting that things will be better, or at least not too different, after. What you describe is a large change. Imagine tho if you were female ... There us no "V" for us .. We must endure. I have tertiary Addison's; look it up. There isn't much one can do, but endure. BUT we can, all of us, find new and, yes you mentioned it, creative imaginative ways to enjoy intimacies. You'll find your way, I'm sure!
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frostokovich: Shadowbridge
User: frostokovich
Date: 2009-11-05 13:28 (UTC)
Subject: Painfully honest
And no doubt not the easiest piece to write and share. Thanks for doing it, though.
May it all come back to you, in greatest pleasure, tenfold.
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User: kellymccullough
Date: 2009-11-05 15:55 (UTC)
Subject: (no subject)
My hat's off to you for having the intestinal fortitude to write this post, and doubly so considering the state of your intestines;-) Pulling for you.
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Chris McKitterick: angry rocket monkey
User: mckitterick
Date: 2009-11-05 23:40 (UTC)
Subject: (no subject)
Keyword:angry rocket monkey
Well, fuck (as much as possible - ba-da-boom, tssch!). It's not enough that you have to deal with all the other stuff. Here's hoping all works out for the best very soon.
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User: phoenix14159
Date: 2009-11-23 09:27 (UTC)
Subject: (no subject)
A bit belated; I'd dropped off LJ for a while, but heard at the OryCon meeting that you wouldn't be attending and came here to get more up-to-date.

I'll be thinking of you on Thursday, and hoping that you pull through with the proverbial flying colors.

On the topic of this specific post, it may be obvious, but I'll suggest anyway that you keep getting the (measly) 5 pills per month that the insurance pays for during those months when you won't have the energy to use them. Many insurance plans will approve a refill after less than 28 days, so get 'em early and often!
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Jay Lake
User: jaylake
Date: 2009-11-23 14:54 (UTC)
Subject: (no subject)
Yep. Will definitely be working the refills, even while I'm off the radar. :)
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