Friday, January 7, 2011

Day 246: For Adults Only

Just when I thought that there would be nothing much to say about cancer, a bunch of interesting things have happened. A few weeks ago I took the advice of the patient advocate at the hospital where I did radiation and looked into this unique opportunity at the University of Chicago. There is an ob/gyn who heads a clinic that focuses exclusively on women and girls and sexual issues arising from cancer. At first, I was hoping that I could get some help with my insufferable hot flashes. I learned that this is not the focus, but I decided to make an appointment anyway. While most of what I say in this blog is actually not that personal to me, it is mostly about sexuality, so don’t read it if that bugs you.

Before I get into what has happened as a result of this, I have to remark on how old the U of C hospital is. It is kind of unbelievable. The “clinic” itself is like the hospital version of a cubicle. There is no door, just a curtain. There’s a chair with stirrups instead of a table or bed. They gave me handwritten receipts, someone in the waiting area stole the only hat that fits my baldish head, and getting there was confusing as hell.

At the end of the day, I didn’t really care about any of that. The first time I went in for an appointment, I was mostly desperate about hot flashes, as I mentioned. I went back to acupuncture even though my freebies have been exhausted, thinking that maybe acupuncture helped with the severity of the flashes if not the overall presence. I have had several days of hourly hot flashes with several an hour at night. I started to feel like I was losing my mind, especially since I was just about to return to work.

The last few days have been better—ironically, AFTER I stopped taking a bunch of vitamins and supplements that are supposed to help. I still have them all the time, though. When I got to the clinic, I learned that we would focus on sexual issues mostly. I filled out a long questionnaire about my cancer history, general health, sexual history and current practices, my marriage, exercise schedule, sleep, you name it. I met with the female doctor and her assistant for over an hour. There was no physical exam—we just talked.

They were momentarily surprised that I was there at all when I told them how often I have sex. Some women come to us after they haven’t had sex for a year, they told me. I almost lost my lunch when I heard that. Why do women accept such things as normal? I told them that regardless of how technically normal my sex life seems, it is not normal to me. The frequency is less, and my libido is gone. It’s like a light switch just went off, and I feel like a different person. It feels different, and I find the whole thing frustrating and sad. Gabe is very patient and seems to be much less frustrated than I am, though he does feel bad that so much has changed for me. We have figured out what we need to do for things to be close to normal for me, and it has worked, but it’s still a struggle.

Why am I writing about this, which seems so “personal?” Because after that moment of surprise, once I unleashed all my frustrations, the doctor said, ok, this sounds very normal. Many women with cancer go through these changes. What is important is that it is different for you, and you want to do something about it. And I thought, if this is so normal, why doesn’t anyone talk about it? Forget cancer treatment—we don’t talk about menopause in general. I can’t watch primetime tv without 5 viagra or cialis commercials, and male celebrities are always out there pimping erectile dysfunction meds, but it is considered crazy to talk about an enormous life change that happens to all women who age, and that unfortunately happens to some young women due to chemo- or surgery-induced menopause.

So I’ve decided to say something about it. The doctor wanted to make sure that my childhood or relationship with Gabe wasn’t the problem. Do we have stress? Do we argue? Was I traumatized by my car accident? Um, yes, yes, and yes. Everything since May has been one big ball of stress and we have had some very tough times. I was afraid of dying after the car accident and a lot of other traumatic things have happened to me that I didn’t even mention to her. But that was all true for years before chemo came along and then BAM. I had a period, normal cycles, then the switch was turned and I was 55. That just happened a few months ago.

She gave me a bunch of suggestions on what to do. In fact, she gave me one of the best quotes of my cancer experience so far. She said that the best lube for women going through menopause due to cancer treatment is…olive oil, but you can’t use it with condoms. “It’s cheap, it’s in your pantry, and it doesn’t interfere with oral sex.”

Now, why did I have to wait 8 months to get this practical advice? You can tell me 50 different places to buy a wig or a headscarf, all of which I never even wore, but I have to go to this one specialist to get this basic information on something that relates to my every day life?

The next appointment consisted of some more talking and an intensive gyne exam. I am not one of those new-agey women who likes to look at herself with a hand mirror; in fact, I refused the mirror when I was in labor both times. Why would I want to see that? Talk about distracting—I have work to do here, I feel like I am in touch with myself enough, thanks, but I need to do the equivalent of pushing a watermelon out of my nostril so get that damn mirror away from me.

But this time I took the mirror, and a map of a woman’s reproductive organs, and the doctor showed me what she was looking for—muscle atrophy, tearing, all kinds of other stuff that would make any woman reading this cringe. Men, just imagine someone giving you an exam to determine if your penis or testicles were permanently injured or defective due to some crap you had to do for cancer that was unrelated to those parts of your body.

I felt this overwhelming sense of relief when I learned that I am still normal, for all intents and purposes. She told me that if I hadn’t told her I was going through breast cancer treatment, she wouldn’t know I had gone through chemo. My parts are all technically in fine working order, in good condition for my age and for someone who has had two kids. That is some of the best good news I’ve had.

That doesn’t mean things aren’t different, or that menopause hasn’t happened to me. We have gone back and forth on whether or not I should get my hormone levels checked. On the one hand, it would be good to know if I am peri-menopausal or menopausal. On the other hand, that wouldn’t tell me if I will stay in that state, get worse, or get better. And since my hormone levels were never checked before chemo, we don’t know what my baseline is. She gave me a prescription for a topical estrogen cream, which I am allowed to use since I’m triple negative. She had some other suggestions as well, some of which are practical, some not so much. In fact, she’s the only person in 25 years who has suggested that I do some physical therapy for my hips. She thought that might help with my arthritis and everything, and that it wouldn’t hurt with the sexual issues either. I don’t think I have time to do that, but it’s amazing to realize I never did any PT for that accident—they just told me to lie in bed until I could walk. My parents didn’t know how to help me learn to walk, and I was given some adult-sized walker that was impossible for me to use. So I went from a bedridden kid who needed to be lifted to go to the bathroom and turned to avoid bedsores straight to crutches.

At least in that area, I can see that medicine has improved greatly. That would never happen today—people seem to get physical therapy for everything these days. But in the end I think I’ve turned out ok. When I was pregnant with Lenny I asked the doc if I would be able to deliver naturally due to my issue with my hips. He said that would only be a problem if I had, like, broken my pelvis or something. Um yes, I broke it in several places on both sides. He gave me a surprised stare, then looked me up and down, put his hands on my hips and said “You’ll be fine.” I never did know how to interpret that, but it didn’t sound like I needed therapy. But you know, being unable to sleep soundly or do a decent pilates stretch is annoying, so the P.T. is a thought.

But back to the subject matter at hand. This menopause issue is so huge for young cancer survivors. Hell, it’s important for women in general, but it’s a really depressing outcome when you are going through breast cancer treatment (why kill ovaries to save breasts?) at such a young age. It’s a major problem, and yet every time I talk about this sexual stuff with people, I feel like I have to hide my real feelings. I just revert to saying “I mean, my husband’s 35 too!” to explain, and then I get these knowing looks and laughs. That’s all just a smokescreen though. Gabe’s sex drive hasn’t changed, his body’s the same, and he doesn’t seem upset or depressed about the state of our personal affairs. The truth is, it sucks for me, not for him. I feel like I’ve lost something big, and I feel old. It is also not something that is rare, or specific to me. The vast majority of women who go through chemo for breast cancer will go through a sudden, violent menopause. You are warned of this, just as you are warned that you will lose your hair.

But that’s where it ends. They offer you some egg freezing technology and send you on your way. There is no attempt to prepare you for what this means or how it will feel. There are boutiques, salons, counselors, websites, and all kinds of other things set up to help you deal with hair loss from chemo. Loss of your fertility and sexual function? Good luck. What’s wrong about that is that hair loss is cosmetic, and sexuality is an inherent part of identity. I have talked to all of my other doctors about this. My regular gyne was eventually sympathetic, but he suggested that I just wait it out and I will see my body go back to normal. My oncologist’s staff basically responded to me as if I was one of the women who hadn’t had sex in a year. Just try to ease back into it, they told me. I think they felt for me, but when I heard that it wasn’t even worth getting into a larger conversation. I’ll just stick with the clinic.

At my first appointment there, I was saddened to learn that there is a specific focus on girls. Maybe saddened is the wrong word—I am so glad someone is doing that. The doctor explained that some girls who go through cancer treatment before puberty have no idea what normal cycles or sexual feelings are like, and they don’t know what to expect. They literally don’t know what they are missing. That made me realize that while I will never feel lucky when going through this, it is all relative. I know what normal is for me, and I’ve had decades to learn and experience how great and important sexuality is. At least I got to have kids before my fertility was stripped away. I was already married when this happened, so I don’t have to figure out how to date with all this shit going on. My husband really likes me. I don’t have any of the other long term side effects from chemo that could creep into my life and make me feel 100. I got to have a childhood without cancer, though I had other things to contend with, I suppose.

I got to be an adult who could bitch about the bad things that chemo does to you. I wouldn’t have had the first clue when I was a kid—I remember. I would have accepted it, not known any different. I feel for those girls. As soon as she started talking about this I thought about Lenny. I thought about how they will make her do mammograms starting when she’s 24. While I would want any potential cancer to be found as early as possible for my daughter, I also think, my god, what’s the likelihood she’ll have kids at that point? I can’t imagine her going through menopause at that age. That’s taking the best years of your youth from you. I’m glad I didn’t find out I had cancer at the beginning, 3 or 6 years ago or whenever it started. I’ve only been married a little over six years and both of my kids were born in that time. I nursed those babies, got back into shape, lived a woman’s life.

That’s really all I’m trying to do, live a young woman’s life. And sexuality is just part of that. I don’t think this subject matter is that risqué. Clearly, I’m a married mom, so the fact of my sex life is not novel. What is novel is that there are apparently only two clinics in the entire country that focus on this issue—women, cancer treatment, and sexuality. I’m glad I live in one of the cities that has one. I don’t know that I will need to continue going there, but it was such a weight off of my shoulders to discuss this with someone who wouldn’t tell me that I was whining, or that I should just wait, or who made a joke about it or told me I shouldn’t complain. It was worth it for the validation alone.

Besides the clinic, i’s been quite a week of doctor’s appointments. I went to see the surgeon for a six month follow up (is that possible?) and my oncologist for the three month checkup. These appointments consisted of four different breast exams by four people. It’s a good thing that pregnancy, delivery, and then cancer took my medical modesty from me. Apparently, I’m doing great. No lymphedema, great range of motion in my arm, the radiation burns have healed, my breasts are very symmetrical (the surgeon was proud of herself—she said she was very pleased with how well they looked “considering how much I took out of there!”), my hair is growing back. Now I just have to wait until the end of February to get that first scan. It is such a cruel irony to make you go through all of these follow-up tests, so that you’re panicking all the time. Do they think we don’t feel our breasts for lumps? Why make you have a heart attack for a week straight every six months for years? It makes me tired to think of it.

It was a very surreal experience to be back in the same waiting room where I waited for chemo all of those times, knowing I wouldn’t have to actually go through chemo. I saw a bald woman in the waiting room, chatting with her friend, reading a magazine, and it was such déjà vu. I can see now why the baldness came across as ballsiness. There were dozens of women in this room who have cancer, and only one was bald, without a scarf or wig. And that woman was not me. She stood out, and I wanted to say something, but I decided not to, because she reminded me so much of myself that I thought she didn’t need anyone to say anything. There was no statement being made, she was just bald. And waiting for chemo. When her name was called, she rolled her eyes, and then I did say something to her.

“Have fun!”

Anyone who hadn’t gone through it could get slapped for that one, but she just laughed. I felt this sudden wave of relief, mixed with an almost palpable fear. I am not a cancer patient anymore. I am not one of the people waiting for chemo or radiation. I am not even here for a mammogram. To everyone else in the room, most of whom were at a stage of this journey that precedes where I’m at, I’m lucky. But all I could think was, my God, what if I have to do this again? What if I have to sit in this room, waiting to kill myself with poison again?

It’s just too painful to imagine. I know that sounds dramatic, but seriously—it is.
I am aware that there are worse things. A woman at water aerobics told me she was glad I finished my treatment and that’s what she said to me: “I’ve done worse things.” I didn’t know until then that she had had breast cancer. And you know, I could say I’ve done worse things, but I would be mostly lying. I told her I had recovered very well, except chemo put me into menopause and the hot flashes were driving me nuts. She’s an older woman, and she laughed at me, saying, but that’s just normal life. Um, no, not at my age, I thought.

So yes, I know it could be worse. I went back to work yesterday, which is going to be a big adjustment. I feel like a fish out of water there, but that’s not the story I want to tell. I found out that one of our law enforcement guys passed away while I was on leave. (The Fed has real police, with batons and guns and all, and we pass through metal detectors and have our bags screened every time we go into work. I would love to avoid the radiation of full body scanners, but I fail to see the big deal about airport security. So many people, strangers included, have seen my body naked, in the flesh, as a direct consequence of my medical ordeals that I can’t imagine giving a shit about someone seeing an anonymous image of me. Whether or not it’s effective is another issue.) He had survived cancer and Iraq. He was worried his cancer had returned so he went to get an MRI, and had a fatal allergic reaction to the dye that was injected in him for the test. He was 27 years old, extremely friendly and really seemed to care about everyone he met. He left behind a very young widow and two children, including a 5 month old baby.

The lesson could be, life is ironic, or that I am lucky to be alive, or something else. But I think the lesson is that there are no lessons, there is only life. He had gone through some terrible things and should have been spared more terrible things. Something so mundane shouldn’t be allowed to snuff out such a life of promise. But none of us has been asked permission for life to be what it is, so what is there to do? Perhaps we can just look knowingly at each other every once in a while, suppress a smile, say the only thing that is really important, because it isn’t important at all. Have fun.


  1. The camera doesn't lie. That hair is red. Dark, deep, last glow after the sun has set kind of red. The kind that can easily be mistaken for brown in florescent lighting. Oh, sure, there are the doubters who may say it's wishful thinking; but I ask this - how many brunettes look like they have red hair in any kind of picture under any lighting ever? Maybe when that same setting sun shines on them?

    I find it hard to believe that the clinic you went to is only one of two in the country. How's that for a distressing thought? I am quite disgusted by modern medicine's focus on my father's demographic at the expense of everyone else.

    But to be more positive and sidestep a cesspool of misandry, it is good to hear that someone is treating the human being for a change instead of the disease. The protocol after breast cancer surgery, where you're left to wake up alone to discover for yourself whether your cancer has spread by feeling for the drain in your armpit - that has to be among the least considered and most cruel of outcomes of any procedure - it's just terrible. And while there's encouraging news with new blood tests and treatment regimens in the future - it's too bad you have to suffer as you are, but you will endure, you can live now, have fun, and be cancer free.

    I love you so very much, and I admire and am proud of you. I am lucky beyond reckoning. g=

  2. Hey babe I think you just came up with the name for a new rock band: "Cesspool of Misandry." Nice.

  3. I've been following your blog for a while and admire your strength! I could go on and on and on, but will just say that your honest comments do help other women out there learn to expect. While I am lucky to not have cancer, last year my mother was diagnosed with breast cancer. Just wehn we thought she was in the clear, she was diagnosed with stage iv ovarian cancer. Now they're quite certain it's genetic, which means that I'd have some big decisions to make. Will I let them yank out my ovaries to decrease my chances? We're nearly the same age, but I'm not married, nor do I have kids. It's a rough world out there, having significant things taken away, but in the end we have to learn to accept and stay strong. Keep on writing!

  4. Hello B, I'm sorry to hear about your mother--that's really tough. It sounds like you will be doing some genetic testing as well, and that too is really tough! It helps to find some honest docs who can outline all of your options--I was glad to have that, in addition to the counseling, when I went through the BRCA testing.

    I am touched by your interest in the blog and I'm glad that someone is finding it useful. I wish you the best of luck. Please keep in touch.

  5. I like the doctor who you talked to at the clinic. "What is important is that it is different for you, and you want to do something about it." That's all that matters.

    By the way, Augie chugging at the jug is hilarious, and your hair looks very nice. (My friend here at work had hers come in completely grey after chemo, so I am actually quite happy for you at least on that front.)