Susan Gubar has done it again. She’s written another fantastic post for The New York Times‘s Well blog. This one is about The Scar Project, which is near and dear to my heart. Perhaps it’s a theme this week: scars, invisible and visible, and how we cancerchicks live with them for the rest of our lives. The women pictured in The Scar Project will have a long, long time to figure out how to live with those scars, as they are all under the age of 40.
Says Gubar of the young women portrayed: “The youthfulness of David Jay’s subjects wrenches me. Unlike them, I had a good span of my adult life — more than 60 years — before treatment. Their bodies stopped being their own too soon. Did their selves also stop being their own too soon? Cancer scars are physical mutilations of and on the body; but, more than that, cancer scars the psyche, the soul, the spirit. The ‘me’ before cancer is not the ‘me’ after cancer. Nor can these identities always be sutured.”
Yes, Susan Gubar, I think it’s safe to say that our bodies and our selves did indeed stop being their own too soon. I was 40 when I was diagnosed, which is old by The Scar Project standards, but I can say with certainty that it totally sucks to have been denied a good span of my adult life before cancer . It’s a drag. Because estrogen feeds my cancer, and many other varieties of breast cancer, I had to shut off the supply of that vital hormone. Being forcefully fast-forwarded into menopause also sucks. Aging on an unnatural timeframe, well ahead of my peers, does too. Having to face mortality decades in advance extracts a heavy toll on us cancerchicks. We want to live long, healthy normal lives; we want to see our children grow up. We hope that cancer doesn’t have other plans for us. Gubar touches on this, too, writing this about the young women portrayed in The Scar Project photos: “The ones that grip me stare at the photographer — at me — defiant. They want to live. I want them to live. Like Barbara Ehrenreich, David Jay seeks to unsettle a ‘public anesthetized by pink ribbons and fluffy teddy bears.’” Unsettle away, Mr Jay.
Gubar writes that “David Jay’s portraits contain images of women whose bared breasts look crumpled, concave, synthetic, reconstructed without or with reconfigured nipples, stitched horizontally or vertically or at an acute angle, lumpy, lopsided, wounded, or hacked off. Bravery resides there, beauty elsewhere.”
Wounded. Hacked off. Those descriptions apply both to my body and my soul. My body is wounded, and like my cancer-ridden breasts, I am hacked off. That this disease happens. That it takes so much from those who are so young. That it steals so much beauty, both internal and external. That the scars that remain are so upsetting, so unsettling. That this disease robs us of our youthfulness and our peace of mind. That the cancer experience changes who we are, forever, and not always in ways that are good or positive.
Gubar says that before cancer, she may have been perceived as being “ungrateful for an intact body, taking for granted organs that functioned normally, arrogant about the boons of health, ignorant of the preciousness of life.” As the old saying goes, we don’t know what we’ve got til its gone, and so too it is with cancer. Pre-cancer, I didn’t think about an intact body, fully functional organs, the boons of health and the preciousness of life the way I do now. While there are days I’m grateful to be up and about and not confined to a hospital bed or tethered to an IV pole, there are many more days in which I’m hacked off. While I take notice of air filling my lungs and appreciate my stamina at the gym, that appreciation is tempered by sadness at what I had to go through. While I am happy that I’m capable of achieving strength and fitness again after the cancer, surgeries, infection, and treatment took their pound of flesh (literally), I’m pissed that my triumph is bested by the omnipresent fear of recurrence.
I can identify with Gubar 100 percent when she says, “I remember the ‘me’ before cancer nostalgically. My earlier self could … connect with family and friends spontaneously and lavishly. At times I visualize the diagnosis as a gun aimed at a flying bird — pitched down from the sky in an instant to lie fluttering on the ground.”
Susan Gubar ends her beautiful article by pointing out that “the young women in The Scar Project were gunned down while just trying their wings. With courage, the wounded survivors bear invisible scar tissue beneath the physical scars of cancer: the haunting lost person each might have become, had it not been for the disease. They live, but not the lives they would have led.”
He’s so young and so cute ya just want to squeeze him. And he’s a hugger, too, so squeezing him is definitely an option. Me, I’m not much of a hugger, as my book club buddy Laura will tell ya. She manages to get more hugs out of me than anyone. I’m not very touchy-feely by nature, but I’m working on it.
I got a couple of hugs from Dr D yesterday, and since I won’t see him again until January, he said Merry Christmas and Happy New Year, too. That makes me panic a little, thinking the holiday madness is upon us and I don’t have enough time to engage in the consumerism that has become de rigueur. I also don’t tend to think that far ahead. I’m more of a small-picture kind of girl who’s learned not to look too far down the road, because there might be something wicked lurking, like a 15mm invasive ductal carcinoma and its nasty friends, DCIS and Paget’s Disease.
Dr D is very big-picture, though, and he’s not at all worried about something wicked lurking down the road. That’s one of the many reasons I like him — every time I see him, he tells me he doesn’t think my cancer is going to come back. That’s music to my ears and a balm for my worried soul. When I told him that I think about recurrence every single day, he tut-tutted and told me to think about something happy instead. Duly noted.
We had a long talk about my love affair with alcohol, as we do at every visit. He knows I’m a fan of the sauce and while he would like to see me cut back because of alcohol being a risk factor for breast cancer, he also advises his patients to live their lives, and he’s realistic about the studies being inconclusive about just how big of a factor alcohol is anyway. I pointed out the tragic and really-not-fair example of Linda McCartney, wife of the famed Beatle, who died from breast cancer even though she was a hard-core vegan, ate 100 percent organic, had no family history of the disease, and never drank. You can’t live much cleaner than that, and the bastard still got her. I’m not vegan, but I am hard-core vegetarian, I eat a lot of organic, I actually like fruits & veg, and had no family history of the bastard disease, so I’m going to enjoy raising a glass here and there. Not every day, like I would like, but that’s my choice. There’s nothing I like more than having a glass of wine while I cook dinner every night. I don’t do that anymore. But I’ll still say cheers to the freaky weekend. And if a certain someone shows up with an unexpected bottle of bubbly because it’s Tuesday, then I say life is for living and pop that cork.
Once we discussed and debated the effect of alcohol on BC patients, we (thankfully) moved on to other topics. He has a very nice bedside manner that involves him spending a good deal of time looking right in his patients’ eyes and asking how the feel. How they are coping. How they are emotionally. He knows that fighting the vicious beast that is cancer is way more than a physical battle, and he spends the time necessary to check on the non-physical battlefield. Smart man. In this process, however, he might have bitten off more than he wanted to chew by asking me if I’m happy with my reconstruction. Cue the $100,000 question.
Do I think my surgeons did a good job with my newly reconstructed chest? Yes. A fantastic job. Does it look 1,000 times better than it did pre-reconstruction? Way. But am I happy? Not so much.
See, we had a conversation very similar to the one last week. And I pointed out to Dr D, as I have to other docs, that I am one of the uncommon BC patients who was happy with her body before cancer ignited a stinking bag of dog-doo on my front porch. Sure there were some things that I wanted to tweak, after having babies, nursing babies, and turning 40, but overall I was happy before. That makes it kinda hard to then be happy with the after side of multiple surgeries and their far-reaching side-effects. I predicted that long after my “journey” is complete and I go back to my pre-cancer life, I will always see the scars instead of the progress. Not to be a Negative Nellie, mind you, but because I am very realistic. I know that the 17-inch scar on my belly will fade. In fact, it already has, and it started out looking way better than a lot of what I’ve seen in doing my research. I know that the “flaps” of skin used to create my breasts will settle into the landscape of my battle-scarred chest. I suspect that some day I will be more “me” and less “it” when it comes to thinking about how cancer has changed my body. But I’m not there yet, and Dr D listened and counseled me.
He gave me a very good piece of advice. So good that Amy jumped up and wrote it down on a piece of paper towel in the exam room. He said, “Focus your attention on the things you have achieved, because you have achieved a lot, but you still have a ways to go.”
He’s right, of course.
I just don’t tend to think that way. I’m way too busy thinking in the here & now (do I have enough bread to pack the kids’ lunches? Did I move the clothes from the washer to the dryer? It’s Mary’s birthday tomorrow; where’s the card I bought for her 4 months ago?). I need to stop a sec and shift from the here & now and the never-ending “to do” list and think for a moment about how far I’ve come and what I’ve achieved. My “journey” has been far from ordinary, routine. As my nurse-friend Laura says, “Everything that could go wrong did, and you were as far from a textbook case as could be.” True dat.
Two really great things came out of my appointment with Dr D, besides the pep talk and his blessing to have a drink. The first is the end of the Lupron shots. Hooray! I endured a year of that blasted drug, and am thrilled to say adios to it. The needle was huge, the drug was of the ilk that burns like fire upon entering the body, and the side-effects were hideous: hot flashes often enough to power a small city. Sweating more than Leon Lett after his infamous fumble against the Dolphins. Mood swings that make people run and hide from me. Joint pain that sometimes catches my breath. Decreased bone density that I can’t feel but fret about anyway. Bye-bye nastiness. Of course the flip side to being done with Lupron injections for hormone suppression means that I have to get serious about the oophorectomy. Gotta get those ovaries removed for good. As much as hate the idea of yet another surgery and yet another recovery, I am of the “slash & burn” mentality when it comes to cancer. Get ’em out so they can’t cause any trouble.
Item #2 in the “this is really great department” was the very last port flush. Hooray! I’ve had my port for almost 18 months, and it has served me well. It’s made my life easier and saved my already-floppy veins from being blown out once and for all. It’s allowed me to endure so many needle sticks that a 20-gauger no longer makes my palms sweat. But I won’t miss it. I will happily bid adieu to the titanium disk sewn into my jugular. I will not miss the monthly flushes with saline and Heparin. I will keep it, though, as a souvenir. As a reminder of all that I’ve achieved. Of all that I’ve endured. Of all the crap that was flung at me but how little of it stuck.
What do you call a recurring nightmare that happens while you’re awake? Recurring daymare doesn’t sound right at all. Whatever it’s called, I’ve been having it. Guys, you may want to click on over to espn.com or continue searching for pics of Minka Kelly in a bikini because I’m fixin’ to talk about some lady stuff.
This blog has been my outlet for all things cancer-related: the good, the bad, and the ugly. Sadly, the latter two categories way outweigh the first in this trilogy, but that’s when you grit your teeth and plow right through it. There’s been much discussion on this blog about highly personal things, and lots of talk about boobs (sorry, guys; not the Minka Kelly type of talk). Such discussion is brutally honest and at times of the sort that makes people uncomfortable, but that’s how I roll. I could no more ignore the elephant in the room than root for the Yankees (dang, even the thought of that makes me sick to my stomach). I never learned how to sweep things under the rug or look the other way, and I’m not one bit sorry.
So, with the disclaimer out of the way, it’s on to the recurring daymare. Several times in the last few days I’ve had a moment of sheer panic when I think I’ve started my period. Not sheer panic in the sense of it’s gonna be a gusher and I’m in my white tennis skirt far, far away from any feminine hygiene products. No, this sheer panic is in the form of a stark realization that if I were to start my period again, after 17 months, that would signal the end of my chemically-induced menopause.
And that would be bad. Very bad.
Not that I love menopause, not by a long shot. I especially do not love menopause at the age of 42. Going through the ‘pause a decade early is cruel and unusual on many fronts: it’s yet another reminder of having been diagnosed with a potentially deadly disease while my kids were still in grade school; it sucks to be enduring it years before my peers; and it forces me to face all the unpleasantries of how breast cancer can destroy one’s self-confidence and body image at a time in which one should be living large in the prime of one’s life, to name of few.
But menopause for me means that the hormone suppression — which comes at quite a cost — is working. It means that the hormones that fueled my cancer are gone. There one day, gone the next. Hormone suppression causes me a litany of problems, but it means instant famine for my cancer.
If I were to start my period, it would be a red flag (pun intended) that my ovaries were pumping out the hormones that cause a technically-she-should-still-be-fertile woman to start her cycle. And while I’d love to return to that carefree time in which my ovaries pumped out whatever hormones necessary to keep me from being the withered husk of a woman that cancer tries to make me, it would be very bad news. I’m already on the short list at my doctors’ offices (plural) for being a troublemaker. The last thing I need is to ring my onco-crush, as Trevor calls him, to say, “Guess what? The ‘take one pill daily for five years’ Tamoxifen and the quarterly shots of Lupron aren’t working anymore.” I think that sweet man might have a heart attack. And I’d never hear the end of it from Dr S, who not-so-secretly thinks I invent symptoms to have a reason to go see my onco-crush, all the while shaking his head and muttering about what anyone could possibly see in a young, handsome, fit Peruvian doctor when there’s a much-older, much wiser plastic surgeon to adore.
This latest daymare is a perfect example of the PTSD that cancer patients endure. I imagine there are some cancer patients out there in this big, wide world who finish treatment and declare that chapter of their life closed, never to be stressed over or fretted upon again. I’m clearly not one of them. I hear tell that one day, this nasty cancer business won’t be in my forethoughts all the time but will be demoted to a back-burner status. I’m not there yet, but I’m hopeful. For now, though, the thoughts are there, and the fears are many. Things that used to scare me don’t scare me anymore (namely needles, but having been poked so many times I’m over it. In fact, I gave myself a shot the other day, like it was a normal, everyday event) but things I never knew were scary now scare the fool outta me. If that makes any sense.
The other day I was chatting with a friend in the parking lot in the brutal and ongoing Texas sun, and suddenly I felt something that flipped the switch from “I’m a normal person having a normal, non-cancer-related conversation with a friend” to full-blown panic, just like that. The feeling? Something wet was collecting, not quite pooling but definitely collecting, under my newly constructed right breast, site of the infection of the year that turned an average bilateral mastectomy recovery into a shitstorm, for lack of a better word.
I went on with my normal, not-cancer-related conversation, hopefully as if nothing was wrong, but was seriously panicked inside. Visions of hospital beds filled my head; the hospital smell that I dread more than words can say infiltrated my nose; and I could almost feel the 20-gauge needle puncturing my skin to access my port so the army of big-gun antibiotics could get in and fight the enemy. In my mind, I had been admitted and diagnosed with a recurrence of that damned infection within the span of a couple of heartbeats. In reality, it was a simple bead of sweat.
Ahh, yes, a simple bead of sweat. Such a common character in the land of perpetual sun, magnified a few million times by standing on a blacktop surface. A simple, everyday occurrence in the life of millions of Texans and citizens of other hot (but not as awesome) states in this fine country. One little bead of sweat that most people don’t even notice had the power to instantly transport me back to the hell that is included, free of charge, with a post-mastectomy infection.
Somebody wake me from this daymare.
If you’re a guy, you might not want to read this because it’s, well, about menopause. If you’re a gal who’s not yet experienced the joys of menopause, you might not want to read this because it will scare you. A lot. If you’re brave enough to venture forth, don’t say I didn’t warn you.
Because my cancer was fed by estrogen, after we got rid of the cancer we also had to remove its fuel source, to discourage it from coming back. Hence the stoppage of estrogen. The most direct way to stop the estrogen is to remove one’s ovaries in a lovely procedure called oovectomy (which would also be a seriously high-scoring Scrabble word). If you’re still fighting a wily infection, like me, being cut open in a hospital of all places is a pretty risky move. Especially since the hospital seems the most likely culprit in the age-old question of “How the Hell Do You Even Get an Infection Like That?” While it’s unlikely that my infection would travel from the chest wall to the nether-regions, that’s a chance I don’t want to take, and frankly the idea of another hospital stay gives me the vapors.
Since I’m not ready for the oovectomy, I get the next-best option of hormone suppression, which is a shot of Lupron every 3 months, and a daily dose of Tamoxifen, which is a SERM (selective estrogen receptor modulator) drug. The latter half of that acronym makes me think of something coming out of the Johnson Space Center instead of a prescription bottle from Walgreens, and talk about some great Scrabble words. Build one of those on a triple word spot and you’re damn close to world domination.
So I’m going along in my cancer journey, minding my own business, doing all the things I’m supposed to do, no matter how unpleasant, and yes it’s really good news that the cancer is gone and the infection is on its last legs, too, but do I really have to deal with menopause, too? That just seems mean. You’re seriously going to tell me that battling both cancer and a nasty infection doesn’t exempt one from the hell of menopause? Mean.
I foolishly thought I’d have another decade before having to face the evil triumvirate of menopause: hot flashes, age spots, and weight gain. Even more foolish was the idea that, compared to cancer, menopause would be easy. Silly me.
Living in Houston, land of eternal summer, during hot-flash season, is a challenge. Come to think of it, neither Houston nor hot flashes have a season, so it’s game on, all the time. Local ladies, if you have any remedies for this please pass them on. I have yet to come across a mobile AC unit. I’d be waiting on the doorstep of Radio Shack to purchase said item and would wear it proudly, if only it existed.
So as I’m mopping my sweaty brow after one particularly potent hot flash, I notice some brown spots on my face. Little specs, bigger than freckles but not as big as liver spots. I tried to pick one off, wipe it away, flick it somewhere, anywhere, to no avail. These babies are staying. There’s a constellation near my left eye, and a nice fat one on the inside corner of my right eye. There’s a trio on my forehead, a few singles lingering on my jawline, and God knows where else that I’ve been too busy fighing cancer to really notice up close. Thank you to all my friends for not pointing them out to me. I know you’ve noticed, but were too charitable to tell me I was growing a connect-the-dot game on my face. And there’s a travel version of this game growing on my hands. I’m aging quite visibly as we speak. Thanks, cancer. You bastard.
While the hot flashes are unpleasant and age spots are depressing, the weight gain is really making me mad. I hope there is a special corner of Hell for whoever came up with the hair-brained idea that women will not only lose their breasts but also face scary treatments, complications and all manner of pain & suffering and then gain weight too? That is one messed up system.