And Then You Wait

Michele Bachmann has decided that the HPV vaccine is an excellent political bludgeon, as it’s one of the few issues on which Rick Perry is less insane than she is. She’s playing it as an emotional “parental rights” issue. She has no idea of the actual emotions involved. The following is a repost from here.

One day your doctor calls. You think to yourself, “Huh. Last clinic, it would have been a nurse. Whatever.” And the news is good: Blood work, even the special stuff they did because you’ve not been feeling well and you have a family history, is perfectly, beautifully normal.

Oh, except the Pap smear came back abnormal and here’s the number for a gynecological clinic and tell them “CIN 2-3″ when you call to make the appointment for a colposcopy.

So you look that up, and you see “moderate to severe” and “carcinoma in situ.” You take a little bit to let that sink in and try to remember there were other words there as well, like “regression,” and as you’re doing that, the phone rings again. This time, you find out that you need to make a change in your health insurance data so your clinic can make the referral so whatever happens next is paid for.

You do that and discover that the change won’t go into effect for just over a week. And then you wait, distracting yourself but not really forgetting. Sometimes, you look everything up again so you don’t forget that “slow” and “regression” really are in there. Somewhere in there, you have a birthday. Oh, yes, and you remember to tell the other person who needs to know, but you don’t really want to worry anyone else unnecessarily.

Once the referral is made (“I set it up for three appointments between now and the end of the year. If you need more, just let me know and I’ll change it to whatever you need.”) and you grab the first available appointment, you go back to waiting. You tell another person, almost as practice.

Your concentration is shot all to hell, but you don’t think you’re doing too badly. Then it’s the day before the appointment and you wonder how much the tension has contributed to the migraines of the past two days. You wonder how much it’s added to the difficulty in writing anything of substance for the last several days. You tell another friend who isn’t asleep yet either.

Then you’re at the doctor’s office and clumsy and not very good at following directions, and you don’t know whether it’s because of lack of sleep or stress or stress making for poor sleep. And you try not to laugh at the doctor, whom you’ve just told you’ve been married for twelve years and that your husband has a vasectomy, when he asks you whether you plan to have children, because really, it’s better that he ask. You’re not laughing at all when he, who’s seen your lab results, mentions that it’s much easier to think about treatment options when he’s not dealing with a 21-year-old who still wants kids.

Then you’re on the table, with a paper lap robe because you don’t watch the needles go in for your shots either, and you hear the word, “extensive.” You admire the way the door opens without exposing you to the hallway when the doctor calls for some help with doing multiple biopsies. Then you try to go away for a little while. You remember laughing when your reading said that something called a “punch biopsy” shouldn’t hurt, since even a Pap hurts, but it isn’t very funny just then.

You can feel the blood as the doctor moves from the one biopsy at “three” to the two at “six” and the one at “nine,” and you understand what “extensive” really means. When he calls for more cotton balls in that “hurry” voice, you wonder whether it’s just that the trouble with getting the biopsy tool to release one of the samples means you’re bleeding longer than he expected you to. You know, after all, about cancer growing extra blood vessels.

There’s some fuss with a coagulant. Then it’s done, and the doctor hands you the largest sanitary pad you’ve ever seen. He says to make an appointment for next Tuesday or Wednesday to discuss the biopsy results and the next steps. “Actually, make it Tuesday afternoon.”

And you get down and look back at the blood and note that it will require a bit more cleanup than just changing the paper and pad on the table. You haven’t been able to move without getting some of it on you, so you wipe it off with a tissue and throw that in the biohazard bin with everything else the doctor threw in there, noting that everything else is very red but not really caring.

Dressed, you walk back down the hall, dazed a little with the impersonal, helpful violence that’s just been done to you. You remember now that someone online suggested taking ibuprofen before the appointment and wish you’d remembered earlier. Nothing seems to have changed for any of the nurses you walk past.

You make the new appointment and leave the clinic. You’re right next to the elevator, but there are chairs just beyond that. You sit in one of those.

Nothing about this appointment has been good news. Much of it has been scary and painful. Wishing that an HPV vaccine had been available when you were young, you compress some small fraction of your situation into a Tweet and ask your friends to please get their kids vaccinated.

You spare a moment to displace a bit of your unhappiness into hate for a surgeon who’s “not yet entirely sold on the HPV vaccine” because “most women undergo yearly Pap smears, which can achieve more or less the same end of decreasing death from cervical cancer.” You think, uncharitably, about how compliant patients under anesthesia are. And you wonder whether you somehow deserve this because you went a few years between doctors after a couple of years of frequent visits to get a few health issues sorted out. Should reveling in feeling good be punished by this sort of anxiety? Do you have to be “most women” before it’s worthwhile to decrease your chances of death too?

Then you go to work, hoping to distract yourself. It doesn’t take long to figure out it won’t work. The pain, even after ibuprofen, is a constant reminder. You find yourself wishing you’d opted for the propranolol again for the migraines instead of trying the Prozac this time around. Being insensitive to all the adrenaline you can’t do anything with would be lovely right about now.

You give in and bug a friend who can take some time off during the day, even if he shouldn’t, to come take you to lunch and distract you. He obliges and does an excellent job of it, and by the time you get home, you’re feeling much more calm. Then you do more research, wanting to know what it is you’ll only hear half of if the doctor should say, “cancer,” in a week’s time. It gives you information but no perspective. Survival rates don’t really mean anything when you don’t really know anything.

You throw information out into the ether again, this time with some funny in it to make it easier for everyone to cope. You bless Facebook for being the kind of place where, even when people don’t know what to say, they say something. You bless the people who reach out in other, sometimes less convenient ways. You bless your friends who’ve been through similar things for saying so and making you feel less alone. You bless the doctor friend who does know what to say in response to you saying you don’t know anything but have reasons to be worried.

Then you’ve done what you can do, but you don’t know what to do next. You don’t make any plans, because no matter what will happen, it will involve more of that helpful violence and you don’t know what you’ll be able to do. So you concentrate on healing, not that you’ll make any difference.

You try not to mind that the reminders are always there: the pain, the shedding clots, the sharply metallic coppery smell of blood that is different than the smell of normal monthly “bleeding.” You try not to let yourself get too self-centered, both because it isn’t fair to others and because you’re not very entertaining just now. You try not to veer too sharply toward either despair or complacency. You don’t do any of these well, but they’re all you can really do. So you keep trying.

And then you wait.

I wrote this almost two years ago. Since then, I’ve gone through surgery, discovered that vicodin and I don’t get along, spent the night in the emergency room bleeding, discovered that bed rest and I don’t get along, and almost gotten back to the point where I can work aggressively to get myself back in shape. I’m luckier than some. HPV is a disease, not a rhetorical point to be used when you’re slipping in the polls.

And Then You Wait
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18 thoughts on “And Then You Wait

  1. 1

    Thank you for writing so well what so many of us have gone through and why it more than infuriates the hell out of us when a politician dismisses a life-saving vaccine and simultaneously says he/she’s the “pro-life” one.

  2. 2

    I hate cancer. Bachmann has made herself an ally of cancer. Bachmann is either an idiot or evil distilled and personified.

    Having seen her in action, I prefer “idiot”. She is still advocating mass slaughter of humans, for which I cannot countenance. Please, America, vote for someone else.

  3. 3

    I have been through this too, earlier this year.

    extensive CIN 3, colposcopy, loop electrosurgery excision, and the followup inconclusive pap.

    Maybe they got it all, maybe they didn’t. Nobody looked at the surgical margins, that isn’t done. Just keep getting those paps. Every 3 months, until you get a couple of normal ones in a row. I guess HPV is slow enough that it’s ok to continue for as long as it takes to get those normal paps. Meanwhile you wait.

    I wonder if any of Michele Bachmann’s 23 foster kids got the vaccine? Or if any of them went through this same thing. How very “pro life” of her and all of the super-christians.

  4. 4

    Hey, ScienceWoman, good to see you around here.

    ceece, I’m sorry. That sucks. While mine was extensive enough that they did check the margins (plus add laser treatment to the LEEP), that means I’ve got a little more peace of mind now. Plus four clean Paps since then. My mother went through the multiple test-and-treat cycles, though. Hang in there. If there’s more, they will get it all eventually.

  5. 5

    I wish you could headbutt cancer. Not your cervix, specifically, but the disembodied avatar of the concept of cancer. I would gladly do so. Twice, even.

    Yeah, that’s when you know I’ve got nothing to say. I say something random.

  6. 6

    I was at the upper age limit when that vaccine came out. Being fresh out of college I was no longer covered by my parent’s insurance, nor did I have insurance of my own.

    We still made sure I got the vaccination. 5 years previous I had lost an aunt to cervical cancer, and later that year I would lose another.

    Sure undergoing early, yearly pap smears helps with the early detection and increasing the chances of survival, but why suffer as you did if there’s a chance to prevent the whole ordeal from happening.

    I hope 2 years has been long enough to put you past “cancer patient” to “cancer survivor” and thank you for putting into words so well just how emotional the process is.

  7. 7

    Oh god. You just brought so much back for me. You’ve written this so well, expressed the weirdness and the complete lack of drama and the freaking out but you can’t really express it publicly, nobody would understand they’d just look at you like you were crazy even though you’d really desperately love a moment of kindness from someone, anyone, so you’re wearing this perfectly blank face… and your phrase, helpful violence, yes. Yes, yes, yes. It is violent, but you know it’s necessary, and I’m so glad someone else said it so I don’t feel quite so alone – because when it was happening it felt very, very alone, driving there, and feeling sick afterwards and having to drive myself back home because nobody told me I’d feel that bad so I didn’t ask the husband to come with me. Nobody *tells* you this stuff. So thank you.

  8. 8

    My wife went through her CIN 2 9 years ago…and I felt so fuckin helpless in that I could only support and encourage her.

    I’m with Jason and Lordshipmayhem on this. Hateful headbutting…yeah.

  9. 12

    As a father to a young girl (soon to be two!), I can’t imagine why any parent would stand against a potentially life saving vaccine.
    The thousands of women whose lives will be saved every year are worth fighting for- and even if you couldn’t care less about the incalculable value of those lives, the amount of money saved in cancer treatment and missed productivity alone makes this vaccine a cost benefit.
    I, for one, won’t risk seeing my girls die of a disease that was easily prevented. People like Michelle Bachmann should be held responsible for every unnecessary death as a result of their actions, as should every parent who refuses to vaccinate their children.
    Your story broke my heart over and over- imagining how cervical cancer can steal the things I value so dearly; my wife, my daughters, my friends- and how it came so disastrously close to robbing us all of a voice as important as yours.

  10. 13

    Thanks, George. Do consider getting the boys vaccinated too, though. Not only does it improve herd immunity, but they’re susceptible to cancers from HPV as well. It’s just that those cancers are somewhat more rare and significantly more taboo to discuss. Otherwise, you’d see stories like this from men too.

  11. 14

    I was under the impression that the vaccine was not available to boys- or that it was entirely useless to them.
    My oldest turns twelve tomorrow, and you can be darn sure I’ll be getting him the shot in the next few weeks.

  12. 18

    This afternoon on campus, I found myself walking behind an undergraduate on her cell phone. I overheard her say in impassioned tones, “It’s the government trying to kill you.” Then: “My mom told me that it isn’t even a vaccine.”

    As she continued to talk, my blood boiled. I couldn’t stay there. If I did, I knew I would ask her how she got into college if she didn’t have the sense to take some biology classes and retrieve articles from PubMed instead of relying on a scientifically-illiterate wingnut parent to explain Gardasil to her. I knew I would also ask her why she was clad in naught but flip-flops and glorified underwear if she was such a principled adherent to the “conservative” values that led her to denounce Gardasil as a fake vaccine and a government plot to kill US citizens.

    I don’t pick on kids, though. It’s out of character for me to start conversations– let alone arguments– with strangers off-blog, too. So I jogged ahead of her, forcing myself to tune her out.

    Ah, well. What can one do? *cues music*

    They’ve been spending all their lives livin’ in the wingnuts’ paradise
    They’ve been spending all their lives livin’ in the wingnuts’ paradise

    (h/t the commenter who first made this allusion on Ed Brayton’s blog. Ever since I overheard that stupid conversation this afternoon, that tune has been stuck in my head. Now I have two things to blame Bachmann for.)

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