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Jay Lake
Date: 2010-03-14 10:23
Subject: [cancer] Chemo, sex, Viagra and me
Security: Public
Tags:cancer, health, personal, sex
As I've mentioned before, sexuality on chemo has been a real challenge. Not impossible, but difficult. I've a very strong libido, which hasn't been suppressed even by the experience of cancer, surgery and chemotherapy. But since my colon surgery of May 2008, my erectile function has been very erratic. That was a known side effect disclosed and discussed during pre-operative consent. Among other issues, the colon surgery disturbs the vagus nerve, which is involved in sexual functionality and response. As a result, my erections are infrequent, erratic and undependable.

Luckily for me, my sexuality has never been particularly dependent on good old Number One. I'm not even all that orgasm focused for my own part, so sex is still satisfying for me and my partners, but limited in some ways. Viagra has been reasonably effective in managing the erectile dysfunction up til now. But with the advent of chemo, the erectile dysfunction has gotten so severe as to be nearly absolute. Even Viagra is iffy, and I'm supposed to stay off it in part because my chemo cocktail raises my blood pressure, which doesn't mix well with Viagra's effects.

Most of the information about sexuality and cancer for men is centered on prostate cancer. I suppose the reasons for this are obvious enough. But any strong course of chemotherapy can interfere with sexual functionality, and as I've commented before, the medical information about sex on chemo is iffy. The drug companies and the oncology clinics are so paranoid about the potential for violent birth defects from the cytotoxic drugs — which can create birth defects on a par with Thalidomide &mash; that they simply won't research or discuss sexuality on the drugs. There is an absolute fear of liability from defective pregnancies that trumps all other possibilities.

As I've pointed out to the clinic staff, about half the people in for chemo aren't fertile. Older couples, gay couples, people who've had vasectomies or hysterectomies. Mostly they just won't talk about it. I finally found one oncology Nurse Practitioner on staff who is a former AIDs educator. She's willing to be frank, and has told me that most patients don't even ask the kinds of questions I do.

My questions include:
  • What are the breakdown curves and byproducts of the chemo drugs?

  • What are the concentrations of those byproducts across my two-week cycle?

  • How toxic are my emissions — saliva, sweat, ejaculate — over time?

  • I've been forbidden most sexual practices due to bacterial risk. Is this absolute, or does my risk curve change over time?

  • For example, can I practice cunnilingus in my second week if my partner has just freshly washed and cleaned herself

  • Is unprotected penetrative sex a risk if I withdraw before ejaculation? How much so for me? (Ie, infection risk.) How much so for my partner? (Ie, concentration of toxins in pre-come over the two-week time curve.)

No one ever asks these questions, apparently. And no one wants to answer them. Millions of people go through what I go through, male and female, young and old. The medical establishment's crippling fear of pregnancy liability denies us access to information about sexuality and lifestyle that can been critical to emotional health, relationship maintenance and self-image.

Now in my case, combine this with my insurance carrier's very strange views on Viagra. The drug is reasonably effective for me, even now, though I can only use it sparingly. My doctor (pre-chemo) prescribed me 20 doses per month. For me, when I'm not exhausted or in the throes of some other major chemo side effects, a dose can provide a 20-30 hour window for effective erections — not continuously, but when appropriate. My carrier only allows five doses per month, at a co-pay so high that it approaches the over-the-counter-cost. My chemotherapy sessions (at $16,800 per pop) cost me less out of pocket than five doses of Viagra. Apparently in their estimation, people have sex one day a week. Which is ridiculous. My libido is dialed up much higher than that. I'm quite happily capable of two or three times a day so long as time and energy hold out.

And the carrier has been playing another rather shitty game with me. Every two or three months, they push back the renewal date on my Viagra prescription by about two days. They don't do this with any of my other prescriptions. In effect, over about a two-year period, they are eliminating a month of coverage.

I have appealed the coverage all the way up the chain at my carrier. My claim is that Viagra is medically necessary to restore my lifestyle to its reasonable pre-2008 surgery levels. Their claim is that the Viagra limitations are contracted by my employer as part of the policy coverage.

Apparently I'm entitled to life, but not sex. I don't like this, but it's consistent with the extremely dysfunctional American attitudes about sexuality in general. But this ongoing rollback of my renewal date is just the carrier stealing from me what little they've already given me. And I deeply resent it. I resent a lot of things about what cancer and chemo have done to my sexuality, which is a huge part of my identity, but most of those losses have been natural parts of the treatment process. My insurance carrier stealing a Viagra from me every two or three months is just..what? Chicanery?

I'm going to call tomorrow and try to find out what their justification is. My expectation is that I'll simply hit another brick wall, as I always do on this. Viagra is apparently the blood diamond of insurance coverage. Such a freaky attitude for something so basic, so medically necessary, and so critical to emotional and relationship well-being.

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User: brownkitty
Date: 2010-03-14 17:41 (UTC)
Subject: (no subject)
Does it have to be Viagra?
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Jay Lake: cancer-scars
User: jaylake
Date: 2010-03-14 17:43 (UTC)
Subject: (no subject)
Cialis has no effect on me whatsoever. We tried. I might as well be taking sugar pills. Haven't tried the others. However, they all seem to have the same coverage limitations with my carrier.
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User: brownkitty
Date: 2010-03-14 17:45 (UTC)
Subject: (no subject)
So much for that idea then :(
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User: mpacket
Date: 2010-03-14 18:00 (UTC)
Subject: (no subject)
Could you get cheaper viagra, safely, in Canada?
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Shalanna: witchthink
User: shalanna
Date: 2010-03-14 18:02 (UTC)
Subject: The evil witch croaks out a dissenting POV
Not to play the wicked witch here, but . . . I think they're right if what they're saying is, "This is an optional drug, so we won't pay for it--if you want to pay for it, get it and use it per doctor's instructions, but it's not something that is going to heal your disease that we have agreed to treat, so it's not covered." I'm amazed that the insurance would pay AT ALL for Viagra, as it probably comes under the "optional" heading.

I could argue that I must have an anti-wrinkle cream and therefore they must pay for it . . . but they would argue back that it's cosmetic and/or optional, so they won't pay. It's already very expensive for them to cover all the drugs that ARE necessary to treat diabetes and high blood pressure and all this junk that I have, so I can't really slam them for not paying for the anti-wrinkle stuff. (I did buy one tube of the anti-wrinkle stuff late last year, but after reading how it can make you sunburn and all that jazz, I've been putting off actually trying it. I have really sun-sensitive skin from my own bout with radiation. But now my MOTHER is complaining that she thinks she can see wrinkle lines and crow's feet around my eyes in direct sun, and that she thinks I'd better Do Something Immediately. So, sigh.) I mean . . . I am not looking at this from a POV of emotionality, but of practicality. You CAN live without the Viagra. You CAN'T go without the other treatments. The insurance people have to make decisions based on practicality in this kind of case. I am happy that they're paying for all of your treatment, as there are some people who can't get the treatments they really need. Let's be a bit forgiving on this point.

This won't be forever. You'll get through this and on the other side you can go on to do . . . whatever. For now, be content. It helps the healing.

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Jay Lake
User: jaylake
Date: 2010-03-14 18:04 (UTC)
Subject: Re: The evil witch croaks out a dissenting POV
I take your point, but my opinion is that if reasonably possible I'm entitled to restoration of my pre-cancer lifestyle. I don't think that's out of line for me, as sexuality is a part of a healthy life.
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sparta5: Serious Chick
User: sparta5
Date: 2010-03-14 18:45 (UTC)
Subject: *nodding with Jay*
Keyword:Serious Chick
I'm sorry, but if the treatment you require for a condition causes a side effect that would not be there except for the treatment, it should be covered...no matter what the side effect is. For example, let's say you're taking a medicine to cure something, and it causes major nausea. A prescription for nausea should be covered. No one would even argue with that kind of prescription. But Viagra = sex. And whether they like it or not, the fact that what we're discussing here is a -sexual- side effect is beside the point. It's a side effect and should be addressed.

Also, many people become depressed while undergoing treatments for cancer. Should counseling not be covered because it doesn't "heal your disease that we[they] have agreed to treat"?

And that's the problem. Insurance companies want to try to treat a specific "thing" instead of the whole person...and sex IS a part of being a person.
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shelly_rae: Grumpies
User: shelly_rae
Date: 2010-03-14 19:21 (UTC)
Subject: Re: *nodding with Jay*
Exactly. Our sexuality is a huge part of our identities. Cancer and chemo take so much away from us and causes a huge range of side effects--depression, nausea, sores, bloating, weight loss, neuropathy to name just a few. Treatment should definitely address all side effects, not just the ones that some people approve of.

Of course insurance companies are notorious for using their own sense of "ethics" in these situations. Some will not cover birth control and do cover viagra. How clueless is that?

sparta5 is absolutely right though. Sex IS part of being a person.

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User: deckard7
Date: 2010-03-15 02:02 (UTC)
Subject: Re: *nodding with Jay*
Sparta5's comments make the most sense. Treat the side effect brought on by the original treatment. Let's look at the female perspective, by law many states have to pay for post-mastectomy breast reconstruction. This obviously isn't neccessary for healing and is merely cosmetic in most cases, but it must be covered none the less. Why would you view Viagra as something different?

Shalanna might see things differently this way: Her insurance pays for her diabetes. They cover insulin, test strips, maybe her A1C blood tests, etc. This is right and good because it is pertinent to her health and survival. Diabetes, depending on severity, can be progressive and cause many complications. Suppose she were to have foot problems due to this. To treat her might require numerous Dr. visits, specialty wound care, medicine and perhaps surgery, followed by recovery and possibly rehabilitation. The insurance company decides, based on thier "opinion" of her work and lifestyle (whatever that may be), that her foot is not an integral "need". By amputating the limb, they have a one time cost of surgery rather than numerous prolonged treatments to save the limb.

This example (and I don't know Shalanna so it is only that), may seem extreme but the truth is, I remember a case just like this in the paper several years ago(different ailment). The only reason the person's limb was saved was intervention by the media.

What is the next step in an insurance companies discretionary choices. Will they deny a person's diabetes medicine because they believe that person didn't eat right or exercise or maintain the correct BMI throughout their life? Again, this may seem extreme, but insurance companies have done strange and extreme things in the past to deny claims.

I respect Shalanna's thinking in principle. The insurance companies should be judicious with their money so that the most benefit can be derived by the most individual patients. However, it doesn't work that way. Insurance companies deny claims based on their "opinion" of need every day, whether that is a man on chemo trying to have as normal life as he can with his partner or a child with cancer who may need an experimental treatment for their survival - it's all about the bottom line.

All the best to Shalanna and Jay and anyone else with an ongoing illness they must fight against and live with every day.
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Kimber Harmon Wasden
User: Kimber Harmon Wasden
Date: 2013-08-11 04:26 (UTC)
Subject: Re: *nodding with Jay*
Well Said.
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Sue Burke
User: mount_oregano
Date: 2010-03-14 19:41 (UTC)
Subject: (no subject)
My insurance company wouldn't pay for birth control pills, which isn't uncommon. I don't think it was about sexuality, it was because they knew that women who don't want to get pregnant were going to buy them anyway, and the insurance company could use supposed concerns about attitudes about sex to avoid coverage. Medically necessary? We only need contraception if we chose to have sex. We're not entitled to sex -- really, we're not entitled to anything they can figure out how to deny.

It's the same for you. If you really want Viagra, you'll buy it anyway. They're being cheap bastards, and all the rest is just an excuse.

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Jay Lake
User: jaylake
Date: 2010-03-14 19:45 (UTC)
Subject: (no subject)
The idea that sex is optional, or unnecessary, is so odd to me. So is the argument that 'some people don't have sex, so why should you?'
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Elizabeth Coleman
User: criada
Date: 2010-03-14 20:55 (UTC)
Subject: (no subject)
And hell, some of us don't even use birth control for primarily contraceptive purposes, and insurance still yanks us around.
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User: cissa
Date: 2010-03-16 03:18 (UTC)
Subject: (no subject)
Yes, this. Since insurance companies won't pay for contraception, mostly, I really don't see why they should pay for Viagra.

Now, I pe4rsonally think they should pay for BOTH... but paying only for Viagra- even if "not enough", but refusing pay for contraception for women is insupportable.
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User: inflectionpoint
Date: 2010-03-22 03:19 (UTC)
Subject: (no subject)
this. a very former partner of mine (I'm female, he was male) didn't understand why I was angry when I had this exact problem...

he said, well, the Pill is Optional.

sure it is, but so is having sex with someone who took such an attitude. It was amazing to hear how some people think.
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Kimber Harmon Wasden
User: Kimber Harmon Wasden
Date: 2013-08-11 04:29 (UTC)
Subject: (no subject)
I believe that they should pay for birth control pills, they are used for more than just preventing pregnancy and it will save money in the long run because baby's cost a lot.
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User: torreybird
Date: 2010-03-14 19:57 (UTC)
Subject: (no subject)
No one ever asks these questions, apparently. And no one wants to answer them.

1. Nobody wants to ask - because when it is completely appropriate to ask, throughout childhood, adolescence, and adulthood, we are corrected and ostracized to silence. See governmental and social policies ranging from "abstinence only" to "don't ask/don't tell." Unfortunatly, unless a person has discovered (by their own or others' devices) other cultural options AND become equipped with enough tools of argument and glibness to deliver those arguments, they are trapped by the American sex taboo.

2. Nobody wants to answer them - because in order to have answers, the topic had to be broached, studied, examined, and thereby made ok. #1 prevents #2.

3. Nobody wants to pay for anything they don't have to - and they don't have to because of #1 and #2.

We're enculturated to be so unlike our mammalian selves, we're trapped in prudishness by rigid social norm.

Fucking Puritans. (Or not, as the case too often was.)
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User: heatherdoodle
Date: 2010-03-14 20:28 (UTC)
Subject: (no subject)
My dad had prostate surgery and now uses a mechanical device which he's pretty happy with, that helps him get it up when he sometimes needs it. Not something to supplant the Viagra, but it could supplement...? It does have drawbacks, though. You have to concentrate on the mechanism when you'd much rather be in bed with your partner, but apparently the partner can get involved and make it more fun.

It's not nearly as good as Viagra, but once you've purchased it, it's free. And, as my dad says, more sex is always better than less.
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They Didn't Ask Me: 7of9voyager
User: dr_phil_physics
Date: 2010-03-14 21:00 (UTC)
Subject: (no subject)
I wonder if the date thing has to do with the fact that 30 days is not, in fact, a month. And they are trying to do a monthly supply rather than a 30 day supply, but most prescription orders are for 30 or 90 days. That pesky 365.25 days in a year such that the orbital and rotational periods of the Earth are not linked is so inconvenient at times. (grin)

Dr. Phil
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Jay Lake
User: jaylake
Date: 2010-03-15 02:02 (UTC)
Subject: (no subject)
Except they're rolling it forward, so effectively 33 days or so.
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User: wendyzski
Date: 2010-03-14 21:39 (UTC)
Subject: (no subject)
Keyword:buckethead bunny
I'm a recent fan of your books (Green and the City Imperishable ones so far) and a friend mentioned your health issues. I just wanted to come over to wish you well and hope that you will yet make many more wonderful books for me to discover.
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Evil Mommy Tina
User: evilmommytina
Date: 2010-03-15 00:16 (UTC)
Subject: OH BOY!
This illuminates yet another way of getting fucked (without consent) by the medical establishment. Check the number of pills your doctor prescribes for you as well. Most co-pays cover exactly a 30-day prescription - and if the doctor adds in (let's say 5) pills, they get to change you DOUBLE the co-pay... and all you got were 5 days medications and they got all the remainder in profit... unfairly.

You are doing the right thing asking those questions about your sex life... don't let them get all uppity or play stupid in delivering real and respectful answers.

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miki garrison
User: mikigarrison
Date: 2010-03-15 03:00 (UTC)
Subject: (no subject)
This is true, and this is frustrating -- but at least you're getting *something* out of them. Unless state laws dictate otherwise, many of those same insurance plans that will only cover a limited amount of erectile dysfunction meds a month won't cover birth control pills at all, and almost none of them cover even very minimal infertility treatment, regardless of the underlying medical cause. Yes, you're getting screwed -- or unscrewed, as the case may be here -- but when it comes to anything regarding sexuality, women get the far shorter end of the stick from the insurance companies.

FYI -- with the renewal date, I get this problem as well -- it has to do with the fact that although your doctor writes the prescription for a monthly supply, the insurance company is processing it as a 5-week supply, or something like that. It can be a serious problem with some meds, and gives me a significant hoarding instinct...
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User: (Anonymous)
Date: 2010-03-15 03:42 (UTC)
Subject: (no subject)
If you haven't already, try talking to your employer. If you're lucky, they have someone who understands the intricacies of the contract that they signed with the provider. Your employer might have used an insurance broker. Sometimes the broker can help you resolve an issue. If all else fails, contact your State Insurance Commission. They have the authority to regulate and investigate complaints against companies that operate within their border.

I went down this path once after a particularly egregious bit of rejection behavior from United Health Care.

I called the Insurance Commission. I had dates, times, names and a summary of the conversations that I'd had with the insurance company. I don't know what happened behind the scenes, but my problem was solved within a week.

Good luck.
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User: autopope
Date: 2010-03-15 09:38 (UTC)
Subject: (no subject)
Some good news if this goes on; Pfizer's patent on sildenafil citrate (aka Viagra™) expires in 2011-2013 worldwide. At which point, that thundering noise you can hear in the distance is the herd of generics manufacturers stampeding towards the motherlode.

I expect generic sildenafil may well be over-the-counter in pharmacies by 2015.

Returning to unpack this: my assumption is that you're going to need sildenafil for most of the rest of your life, barring breakthroughs in nerve regeneration to fix the damaged vagus (which isn't on the short-term horizon -- 5 years). Even if the chemo is successful and you're completely clear of cancer for the rest of your life, it's going to take you double-digit months to single-digit years to recover fully from the battering your body is currently taking. You'll need sildenafil during this period, for sure. And when you're out of the recovery period you'll be in your fifties, with a damaged vagus.

On the other hand ...

The significance of the patent expiration is that cheap generics costing 30% or less of the price of Viagra™ will show up within 6-12 months (the factories may already be under construction), and a horrendous -- for Pfizer -- price war will ensue. To retaliate, their logical strategy (barring amendments to patent law to grant extensions -- not terribly likely) is going to be to press for over-the-counter approval, so they can put their product directly in front of the consumer rather than their insurance cos. At which point all the generics will show up OTC as well.

So there's an end in sight to having to squabble with your insurer or cough up huge gobbets of cash if you want an erection: just one or two more years, dammit.

(Have I mentioned that I hate how the pharmaceutical industry functions?)

Edited at 2010-03-15 09:48 am (UTC)
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User: dionysus1999
Date: 2010-03-16 20:13 (UTC)
Subject: (no subject)
My new job is admin staff for our social work dept, which administers the Center for Sexual Health.

The American Cancer Society has a booklet titled "Sexuality and Cancer". 80 pages, thought it might be helpful for someone reading your journal.
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my journal
January 2014
2012 appearances