Tag Archives: Breast Cancer

Pink All Over

I started writing this post at the beginning of the month. I thought about what I wanted to say and how I wanted to say it for a long time. October is a trying month for me in a couple of ways. Both my mother and I are breast cancer survivors and her birthday is at the beginning of the month. A month that should be a celebration of my mother’s life brings with it a month slathered in pink bullshit in the guise of cancer awareness. Each October when I celebrate my mother’s life, I am reminded of how close I came to losing her. How long and trying and excruciating her battle was. I wouldn’t have been able to go through what I went through had I not seen how brave and strong my mother was throughout her surgical process. She was there with me, everyday in the hospital, everyday at home, helping me dress and change, helping me care for my wounds and scars and drains. To have to contend with that personal connection to my mother and the unshakable bond we will always have because we went through this process at the same time that our culture becomes swaddled in pink products, perky-breasted celebrity PSAs showing how much they care about women who face this diagnosis, frankly, it’s a real bitch. 

So here is my take on all those “awareness” and “pink power” products and all the talking heads trying to put some sort of fluffy, pearly, sexy spin on a disease that, let’s face it, still kills more than 40,000 women a year and will affect 1 in 8.

It’s that time of year again, when America bathes itself in coat of Pepto Bismal in the name of Breast Cancer Awareness.

It’s well-meaning. It’s meant to raise awareness and money for research and programs that seemingly assist patients. But the truth of the matter is it’s a month of product pushing under the guise of charity. You can buy a $23 designer lipstick from Esteé Lauder and feel good about the $2 (not even 10%) that go towards their in-house foundation. The list of products – exclusively pitched to women – proudly pink and proudly declaring their support for breast cancer is longer than I am tall, but many donate only a small fraction of the cost and most donate nothing at all to research organizations or foundations.

But is it really about awareness or raising money that actually does something for patients?

A dominant voice in “Pink October” is the Komen Foundation, the breast cancer charity founded by Nancy Brinker in the wake of her sister’s death from breast cancer. If you instantly know what a pink ribbon symbolizes, you can thank Komen. If you know that mammography is the best screening measure for breast cancer (particularly in women 50 and older), you can thank Komen. If you’ve ever participated in Race for the Cure, thank Komen. The list of the national effects of Brinker and her foundation are seemingly unending, but do they make a significant enough impact on women, men, and survivability from cancer?

Let’s some things straight about breast cancer:

  • 40,000 women and 450 men will die this year from breast cancer.
  • 1 in 8 women in the United States will be diagnosed during their lifetime.
  • More than a quarter of a million (about 258,000) new cases of breast cancer (in women alone) occur each year.
  • Breast cancer is the most common cancer among women (apart from skin cancers).
  • Breast cancer is the second deadliest (edged out by lung cancer).
  • The survival rate rate is still only 1 in 35.
  • Presently the American Cancer Society estimates there are 2.5 million breast cancer survivors in the US.
  • The survival rate has increased by 60% since mammography became a widespread screening measure.
  • African American women are 5 to 8 times more likely to die from breast cancer than white women.
These statistics aren’t affected by NFL players wearing pink shoes or cheerleaders using pink pompoms. These statistics aren’t affected by scarves or t-shirts, scented candles or cosmetics. What would make anyone think that buying a CFDA t-shirt from Saks would make a difference? Is it good for your “image”? Sure. People see you in your pink ribbon products and think you care or that someone in your life had/has been through the disease. It’s certainly a bonding agent amongst women: the uniting of survivors who find comfort in the understanding and reassuring presence of others who know what they’ve been through and the unifying effect of the fear of being diagnosed and having to face the harsh realities of the disease. But the purchase of products emblazoned with pink ribbons and messages about breast cancer help the company producing them a whole hell of a lot more than the women and men who face a diagnosis and have to deal with the repercussions.
Take a recent article in the New York Times:

In marketing circles, “to pink” means to link a brand or a product or even the entire National Football League to one of the most successful charity campaigns of all time. Like it or not — and some people don’t like it at all — the pinking of America has become a multibillion-dollar business, a marketing, merchandising and fund-raising opportunity that is almost unrivaled in scope. There are pink-ribbon car tires, pink-ribbon clogs, pink eyelash curlers — the list goes on.

Down on the 50-yard line on this early October day isNancy G. Brinker, the chief executive who has done more than any other to create what might be called Pink Inc. With a C.E.O.’s eye, Ms. Brinker has turned her foundation, Susan G. Komen for the Cure, into a juggernaut. She has tied this nonprofit to hundreds of for-profit brands and spread its message far and wide with“Race for the Cure” foot races. She has, in effect, invested to maximize returns. Over the years, Komen has raised many billions of dollars to urge women to get mammograms, as well as for treatment and research.

“It’s a democratization of a disease,” Ms. Brinker, who is the Cowboys’ honorary captain for the day, says just before the coin toss. “It’s drilling down into the deepest pockets of America.”

The story of Komen is, as much as anything, a story of savvy marketing. Ms. Brinker has rebranded an entire disease by putting an upbeat spin on fighting it. Her foundation generated about $420 million in the 2010 fiscal year alone. Perhaps more than any other nonprofit organization, Komen shapes the national conversation about breast cancer.

If you’re feeling hopeful about the strides being made against this disease, rather than frustrated by the lack of progress, that may well reflect Komen’s handiwork. If you think women should be concerned about developing breast cancer, that’s often Komen’s message, too. And if you think mammography is the best answer at the moment, that, again, is the Komen mantra.

Like Big Oil, Big Food and Big Pharma, Big Pink has its share of critics. Some patient advocates complain that Komen and other pink-ribbon charities sugarcoat breast cancer, which kills about 40,000 American women and 450 men annually. Others complain that pink marketing, despite the many millions it raises for charities, is just another way to move merchandise and that it exploits cancer by turning it into an excuse to go shopping. And some pink-theme products have no relationship with any charities at all. (Consumers should check before buying.)

In any case, these critics say, all of those pink ribbons and pink products create more good will for charities and corporations than game-changing medical advances for patients.

The downside to Komen’s slick packaging and upbeat pink image is that it focuses on mammograms and screening as the answer to breast cancer’s long and often deadly reach. But breast cancer awareness isn’t just about mammograms, a screening measure that is not effective on the fatty breast tissue of younger women. Prevention measures need to include campaigns that encourage women to talk openly about family history, especially in minority cultures or religions where open discussion of women’s health and reproductive care is not the norm. It needs to include campaigns aimed at imploring women to speak to their doctors about their health care and risks not just cancer but other illnesses and risks factors that can raise the risk of cancer (smoking, obesity, etc). It needs to include ad campaigns that educate low-income, under-insured or uninsured women on the resources available for wellness care, screening, and access to doctors and resources if they are diagnosed.  The New York Times continues:

This kind of mammography marketing by a variety of nonprofits frustrates patient advocates like Frances Visco, who says it lulls the public into thinking that breast cancer is a manageable chronic disease, while tens of thousands of women are dying from it. Routine screening does identify many breast cancers at early stages, when they are most treatable. It also ends up increasing the numbers of people with precancers and slow-growing tumors who may get unneeded invasive treatment, she says, while doctors still don’t know how to prevent many of the most aggressive breast cancers from spreading.

“If we continue to pretend that it is making a huge difference, we are not going to do the real work and figure out how we can save tens of thousands of lives every year,” says Ms. Visco, president of the National Breast Cancer Coalition, a network of hundreds of patient and professional organizations.

Regardless of efforts of Nancy Brinker and her supporters and detractors, the truth of the matter is that breast cancer is still deadly and a diagnosis of breast cancer still greatly increases a woman’s risk of uterine or ovarian cancer. These facts don’t change with any of the cute merchandise available around every corner, every October.

 

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Scars

In my on going series of posts about my experience with breast cancer, I wanted to talk about the aftermath of surgery, both physically and emotionally.

Here's an image of my right side. You can see the scar running from my hip across my stomach, the scar on my back from the third surgery, and scar on my breast. I've blurred my nipple out.

So, here we go, post-surgery photos.

As I mentioned in “Boobie Wednesday” and “Post-Boobie Wednesday,” I went through numerous surgeries. The first surgery removed my breasts and reconstructed them with muscle and tissue from my abdomen. I awoke after that first surgery in the ICU with nine drains in my body and two pain pumps. So much trauma had been done to my body that I had to be medically sedated to keep from going into shock. An IV in each arm, plus pain pumps implanted in my stomach. A diet of juice, water, jello, and the occasional “treat” of an ice-cold Ginger Ale for four days. It took four nurses to shift my body twice a day to prevent bed sores. It took four nurses to give me a sponge bath. It took four nurses and my parents to get me out of bed to make one lap around the nurses’ station with a walker. A walk that would have taken me two minutes in my pre-surgery shape took me nearly 20 minutes to make. I had to take several breaks. At one point they had to bring a chair for me to sit down in.

Left side.

In the first picture, of my right side, you can see two red welts on my side just under my breast. Those are scars from drains. the red welt on the top of my thigh is one of 13 liposuction puncture sites.

The hardest part of the surgeries was the failure of my stomach incision. It failed after the first, second, and fifth surgeries. My back incision failed in two spots only once, after the third surgery. I was unable to take a picture of my back, but the scar healed thickly; it is as wide as my index finger in places.

Stomach incision. The rippling on my hips is a side effect of the liposuction.

My stomach scar is still very hard and thick. My belly button collapsed three times. What I have today is higher than my “original” belly button was, and I have several thick, hard scars around it and running down from the belly button to the stomach incision.

All in all I am happy with my body, with the breasts that I have now, with the rippled hips and faded welts from liposuction and drains. The scar on my back sits below my bathing suit line and breasts fill out my chest properly. My womanly shape is still here – my breasts, hips, and thighs. The swelling is gone, the scars are starting to soften and the pink and red tones are fading to white.

The hardest part since my last surgery, nearly 11 months ago, has been the emotional aftermath which I wasn’t prepared for. The emotional scars of going through what I went through run deep. I never took time off for my surgeries. I stayed in school full time, scheduling surgeries during school breaks. I tried to come back to the classroom, act like nothing had happened, that I wasn’t hiding bandages and stitches and compression bandages under my clothes. I didn’t tell any of my classmates or professors. I only told my advisor because I was going to have to miss three classes in my second semester. But I downplayed how I felt about it. I didn’t want to be the “sick person.” I didn’t want people making excuses for me, I didn’t want to make excuses for myself.

But in pushing down my feelings about what I was going through I ended up feeling worse. I ultimately hit a wall going 90, my life shattering. I became detached from my work, I stopped caring about school and the goals I had worked for. I wanted so badly to scream to people about what I had been through, to make them understand how miserable and alone I felt in my experience. I felt isolated. I didn’t think anyone could understand what I had been through, the decisions I had made. I didn’t have to have the mastectomies, but it was the best long-term decision for my care, for my quality of life. I didn’t think anyone would understand that. Of course I knew my family loved me, I knew that they had taken care of me and were supportive, but they had never explicitly said that. My mother, a woman who had been through the process herself, had told me one several occasions when I had remarked on my exhaustion and slow recovery that she had “told me so” prior to my surgery but that I “didn’t believe her.” So I stopped talking to her. I stopped talking to everyone. I withdrew entirely from my life. I couldn’t risk having my face rubbed in my decisions. I couldn’t risk feeling more alienated than I already was.

I had pressure from my family to plow ahead into a PhD program, something I was certain I didn’t want anymore, that I couldn’t handle. I applied even though I didn’t want to. I told my family I was working on my thesis even when I wasn’t when I couldn’t, when I wanted nothing more than to drop out of school and never return. The extent of my depression has been expansive. But with the help of a psychiatrist and an anti-depressant, I am coming back. I am slowly starting to get back to work, late yes, but I am getting back. I still haven’t talked to my mother, I don’t know if I ever will. But I am starting to feel like myself again, and that’s all I can hope for.

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Let’s Talk About . . .

. . . sex. Yep, you heard me, sex. More specifically, sex post-breast cancer. For those of you who’ve been tuning in the past few weeks and have read “Boobie Wednesday” and “Post-Boobie Wednesday” then you know that I went through my own experience with breast cancer. I can’t say ‘thank you’ enough to all of you who have tweeted, Facebooked and commented on those posts. I really appreciate your love and support.

So let’s talk about sex and the post-breast cancer body.

I know that there’s still a stigma about women talking openly about sex, and I know that there’s even less open discussion about sex and cancer, especially how women feel after breast cancer. The hardest thing for women and reproductive cancer is the fear of losing their femininity, sex appeal, sensuality. I know I certainly had those concerns. So much of a woman’s identity is bound up in her body, to her external displays of womanhood. Many women hear breast cancer and they immediately fear losing their breasts. I hope that this post will show women of all ages that a diagnosis of breast cancer, or any cancer for that matter, doesn’t have to mean a loss of their sex life or their confidence in their sexuality. My reconstruction was difficult, as I have previously discussed. There were numerous complications. I had more surgeries then initially expected. But in the end my breasts came out wonderfully. I had a womanly silhouette. I have bouncy, full breasts. I don’t feel my femininity is diminished. I don’t feel like any less of a woman. I hope that others will have similar experiences and see a happy, fulfilled sex life after cancer.

Prior to my mastectomy I was confident in my body, I know how men would respond to it, but more importantly I knew how I would respond to them – how my nipples would harden, or the tingling down my spine I would feel at their touch, etc.

After the mastectomy, that become difficult. My confidence was different, I was more secure in myself because I knew how strong my body was, I knew what it was capable of surviving. I was, oddly enough, more confident then I had ever been in myself. But when it came to men – how they would respond to my new breasts, to the scars, to my lack of sensation – I was nervous and scared that my new body would be a turn-off. The internal drive I had had before that gave me the sexy prowl of a confident woman in bed was more timid. I didn’t know that attraction would be immediate. I was afraid that I would have to “convince” someone that I was sexy, to overlook the changes to my body. And even though I have had successful sexual experiences since my surgeries, those fears linger. Though no man has gone screaming from my bedroom, I still have concerns that one day, one man will have a problem with my body.

The first time I had sex after the surgery I was nervous. I had already had “the talk” with the man. Explained what I had gone through, told him that if he wasn’t interested or if he was scared that it was cool to keep it as friends. But he responded to my body, to me as if I hadn’t had breast cancer, as if my body wasn’t different then the “norm.”

He lavished attention on my breasts, enjoying them himself even though I couldn’t feel anything he did. I couldn’t feel his hands on them or his mouth. My nipples didn’t respond to his attention. But I was lucky, he didn’t seem to mind. He liked the look of them and their weight in his hands. Our time together galvanized my emotions. I became very comfortable with him, and my success with him has made experiences since easier.

Having lost sensation in my breasts, foreplay and attention to the rest of my body has become more important to me. I have found other areas of my body have become sensitive and that enjoy attention paid to then. The insides of my wrists, the hollows of my elbows, the back of my knees, my neck and earlobes. These have become the hot spots since losing sensation in my breasts. Discussing this with my partners is key. Explaining that just sucking on my nipples isn’t going to cut it.

Communication is essential to a successful sexual experience, and that is even more the case after trauma to the body. Explaining to my partners that I won’t respond to every touch of his hand or mouth on my body, or that it takes longer for me to rev my engine then most. But I will get there and when I do… I’m a tiger.

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Post-Boobie Wednesday

Thank you for all the support and well wishes over the past week. Last Wednesday I shared in a post my experiences with breast cancer. What followed was an avalanche of love and support from readers. I cannot tell you how much it was all meant to me.

I wanted to continue the effort, partly for myself and partly for all men and women out there who afraid of the aftermath of cancer.

Several people commented last week that breast cancer awareness isn’t the problem, everyone is aware of breast cancer. The actual problem is medical professionals needing to be better at reading mammograms, etc, to prevent unnecessary biopsies or surgeries. I agree. I don’t want anyone to go through what I went through needlessly. But I’m not going to stop beating my drum of self-exams, yearly check-ups, and mammograms in the hopes that we’ll eventually find a cure. In the meantime women need to have an honest conversation with their doctor about their family history, their personal risk factors and the appropriate screening measures for them. So please continue to screen yourselves and encourage the men and women in your lives to screen themselves too.

I want to talk a bit more about the decision process that went into choosing a mastectomy and then talk about the lengthy and still developing aftermath of my surgeries.

Deciding to go through with the mastectomy wasn’t an easy decision. I thought about it for months. I was a young woman, I had just turned 24 when I had the surgery. I wasn’t married or in a serious long-term relationship. I didn’t have children. These were all things to consider. If I had this surgery would I find a partner who could overlook the scars, overlook the lack sensitivity in my breasts and nipples? If I had the surgery would I be okay with not being able to breast feed my child(ren) if I had them? Would I be happy with the outcome? Comfortable with my body? These questions weighed heavily on my mind and I feared that my new body, my new scar-ridden body would be a turn off to prospective sexual partners and that I would grow to regret making such a big decision at such a young age.

I was buoyed in my decision by my mother. An a amazing woman who had beat breast cancer herself and had chosen the mastectomy herself. A month before my surgery we had a very intimate conversation in which she told me that my father had struggled with her “new breasts” and that it took him awhile to be okay with her unresponsiveness. I didn’t want to hear about my parents’ sex life, what child does, but I appreciated my mother not sugar-coating the process. She was honest with me. She told me that the surgery was infinitely more painful than child birth, that recovery is long and difficult, that I would not feel like myself for months, even a year or two, and she wanted me to think long and hard about how this will play out in my later sexual relationships.

I ultimately decided that the surgery was important to me. It was important for my immediate peace of mind and my long term peace of mind. I didn’t want to live the rest of my life looking over my shoulder and wondering when the hammer was going to drop. I wanted the peace of mind of knowing that my risk of a second bout was virtually none. That was really important to me and that was ultimately what made the choice easier for me.

My reconstruction, as I mentioned last week, was a long and winding road. First surgery was 22.5 hours, and I had a week long hospital stay after, and using a walker for a month. Second surgery was 5 hours and the result was the loss of my left breast. I had a Wound VAC for a month. Wound VACs have to be changed in the hospital every other day. I was at hospital for an 1.5 every Monday, Wednesday, and Friday for a month. Showering was a bitch. I had to set my machine on the toilet and could not turn around in the shower, otherwise I would add too much tension to the tube and I could pull the machine off the toilet seat. I had to sleep with the machine plugged in, charging over night. And if you think for one minute that the machine was silent…Well, you have another thing coming. After the VAC came out I still had to treat my stomach twice daily at home and once a week for two months at the hospital.

The third surgery was 17.5 hours and left me weak and unable to lift my arms above my shoulders for a month. I was in the hospital for three days, getting out just in time for Christmas with my family. The long, thick scar across my back opened in two places. I had to have specialized wound care for 7 weeks. I could not get the wound wet at home because I could not change the dressing myself. So I took sponge baths and washed my hair with a detachable shower head for 7 weeks. The fourth surgery was 14 hours and left me in a compression garment from my knees to my bust for two months. I had bruises like I can’t even describe. It hurt to breathe, to sit, to stand, to lie down. Going to the bathroom, getting in and out of the garment was blindingly painful. My skin was painful to the touch. The fifth and final surgery was 10 hours.

It took five surgeries, 69 hours, and a whole year to finish my reconstruction. Am I happy? Yes. So to speak. My left breast is shaped differently from my right breast. It has an implant as opposed to my flesh and tissue. My right breast is soft and round, shaped exquisitely. To say I’m obsessed with it is an understatement. It’s better than my God-given breast. My left breast is flat on top. It doesn’t have the same roundness and drape of my right breast. It has a different feel and weight to it. I choose a silicone implant and I’m glad I did. I think if I had a saline implant I would be even more disappointed.

As to the question of how others have responded to my body. I will admit to being very nervous about this. The first time I had sex after the surgeries I was racked with anxiety. Will he be disgusted by me? Will he be upset that I don’t responded to his touch or his mouth on my breast? It was hard to push those thoughts out of my head. But so far I have been lucky, my partners haven’t run screaming from my bedroom. It’s easy to say in theory that any man who has a problem with my body the way it is now isn’t a man worth having, but I will admit to still being scared of the day when someone does have a problem with it.

I hope that by sharing what I have gone through more women will know that there is life, sex, happiness after breast cancer, after a mastectomy. I don’t feel like less of a woman or less sexy. In fact I feel sexier now that I know what my body is capable of enduring. So many people respond to cancer with an “I’ll never be the same” attitude. It’s true, I’m not the same. I’m better. Really. I’m stronger and braver than before.

 

UPDATE: See related posts, “Boobie Wednesday” and “Let’s Talk About . . .

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“Boobie Wednesday”

Today is Wednesday and in the world of Twitter that means it’s “Boobie Wednesday,” a day full of boob-filled avatars. The purpose for all the cheesecake (and the occasional beefcake)? To raise awareness for breast cancer. Yep, you heard right. Women and men stylin’ and profilin’ in the buff or barely-there bras is all for cancer awareness.

When I first joined twitter last fall I was adamantly against the whole concept of Boobie Wednesday. I thought it sexualized women instead of raise awareness of self-exams, mammograms, and yearly doctor’s visits. I thought it was an excuse for women to attract the drool and attention of the anonymous masses of men on Twitter. I doubted if anyone was really thinking about women and the effects of breast cancer. And I certainly doubted that tits in a lime green bra made one woman think of giving herself a self-exam. So I abstained. I didn’t switch my avatar over every Wednesday to a shot of my breasts. And I criticized the whole concept, griping to anyone who would listen to me.

Then came a Wednesday at the end of January. I swapped out the avatar for one day to show my breasts post-mastectomy, post-reconstruction. I sent out a series of tweets about my nearly two year experience with breast cancer. I was shocked. Among the random smattering of tweets saying things like, “nice tits” and “#motorboat,” were far more tweets from people who didn’t know of my experiences prior and were grateful that I had shared.

So today, Wednesday, instead of trying to educate one tweeter at a time in short truncated tweets, I’ll talk about my experiences here.

Three years ago, April 2008, I was performing my monthly self-exam on my breasts when I felt something odd in the space between my left breast and my left armpit. I had been performing self-exams since a month before my 16th birthday when my mother had been diagnosed with breast cancer. I knew what was “right” and what wasn’t. I made an appointment with my gynecologist for my annual check-up and during the appointment  asked her about the spot. She was unclear about it but recommended I see a breast specialist given my family history. Smart move, the specialist found a lump in my left breast.

In October 2008, after I came back to Texas from NYC, my doctor removed the lump on a Friday morning. The following week, during my follow up appointment we had “the talk.” Some tissue was good, she said. Other tissue is not so much, she said. So what do we do, I asked. We got everything. Nothing concerning on the MRI. Nothing spread. Nothing in your lymph nodes. So we monitor every 6 months. What does that mean? Here’s what that means: office exam every 6 months with in office ultrasound of my breasts, blood tests, MRIs every 6 months. How long do I screen like this? Till you’re 40, then we add mammograms into the mix. Every 6 months? Yes.

My head was spinning. There were cells. But we got them out. Now I had to undergo expensive, annoying screening measures every 6 months? I didn’t want that. I didn’t want to feel like I was living my life in a petri dish, being observed by doctors all the time. Surely there was something else I could do to mitigate my ongoing risk besides all this screening.

So I asked. What are other options?

My doctor said there were medications. They would make me infertile and menopausal. At 23.

I could go through with the genetic testing. Thousands of dollars out of pocket. And then what? What would we do if indeed I had the BRCA 1 or 2 or both? Surgery? My mother, her sister, and my father’s sister have all had breast cancer. My grandmothers died of cancer. My maternal aunts all had breast cancer. I don’t think I need a test to tell me that there’s something genetic going on here.

So then I just said: What about a bi-lateral mastectomy?

She blinked. That’s a big decision, are you sure it’s something you want to consider?

Yes. If I do it now, I have options. If I wait till I’m 40, 50, older, and have cancer again I may not have options.

And so it began. My surgeon would perform my mastectomy. The plastic surgeon who had performed my mother’s reconstruction, who I trusted deeply, would perform my reconstruction.

It took me nearly a year to finalize my decision, get my insurance company to approve it (yes, you heard right, it wasn’t a given), and to settle on what kind of reconstruction I would have.

May 22, 2009. Ready for surgery. Doctors come in to mark my body for surgery. The mastectomy will only be a few hours. The reconstruction could take up to 20 hours. Total, I was in surgery for 22.5 hours. I settled on a skin-sparing mastectomy (keeping my nipples which was very important to me) and a DIEP Flap procedure for my reconstruction.

The DIEP procedure entails cutting low across the stomach from hip to hip, up in a semi-circle above the belly-button. That “flap” is removed and used to reconstruct the breasts. The fatty tissue underneath is also taken to reform the breasts. Blood perforators are delicate lifted from abdominal muscles and used to increase blood flow to transplanted tissue. The belly button is left, like a stalk coming up between abdominal muscles. Skin is then pulled from the upper abdomen and lower pubic area to cover the exposed tissue. I have what roughly looks like a “anchor” scar around my belly button, down to my pubic line and across my hips like a smile.

I spent four days in ICU afterwards. I don’t remember most of my time in ICU. I remember it took four nurses to help me get out of bed on the third day so that I could start waling and sitting up right. I spent about 3.5 days in the hospital after leaving ICU. Occupational therapy had to help me shower, I was too weak and sore to do it myself. I had to use a walker for almost a month. I could not sit up on my own, get out of bed on my own, or use the bathroom on my own. I had 9 drains coming out of my chest and abdomen to draw fluid out of the surgical areas and prevent infection. My legs, feet, ankles, arms and hands swelled, painfully. All this continued after I left the hospital.

My family had to bathe me, dress me, help me get in and out of bed, and worst of all, assist me in using the bathroom. But as humiliating as it was to ask my mother or my sister to help wipe me, the real difficulty came when the incisions started to fail.

I developed a skin allergy to the glue used to seal my incisions. But there was nothing else to use. My belly button “collapsed” twice. The skin along my abdominal incision failed down to the muscle layer. I developed a wound large enough for me to lay my hands in. I developed two failed incision point on my left breast. Then the unimaginable happened. My left breast went hard. The blood flow had failed. The breast tissue had died.

July 1, 2008. Surgery number two. The abdominal incision had reached critical mass. A Wound VAC was required to close it. My surgery was going to go in, debreed the wound and insert the VAC’s gray sponge. She was going to remove the failed tissue from my left breast. Prior to the surgery I was prepared to lose some, but not all my breast. After the surgery, in recovery, I raised my left hand to touch my breast. Nothing. In it’s place was a concave crater. I cried. There hadn’t been tears of loss till then. I had cried in pain or in fear of the mounting concern about my wounds, but I had never cried because I lost my breasts. This time was different. This time I wasn’t ready for what had happened.

That weekend, Fourth of July weekend, I was at my lowest point. I didn’t want to touch it or look at it. I was in pain, severe enough to need an additional pain medication to get through the weekend. I cried, frequently over the course of the weekend. Finally, my mother came in, sat on my bed and talked with me. We talked about how nothing could be done now. The dead tissue had to be removed. But we still had options, I could still have a nice, reconstructed breast. By the next week, by my followup appointment, I was better. I could look at my hollow chest without crying or looking away. And once I got my prosthesis, I was cracking jokes. The prothesis, lovingly called “Fub” (Faux+Boob = “Fuh-b”), lived on my nightstand on little pink pillow at night.

So, I made it through. I made it through a second failed abdominal incision and the subsequent Wound VAC (a machine worn like a purse that applies negative pressure to close a large wound quickly) that I needed for a month. I made it through the second reconstruction surgery (a latissimus flap surgery from my back) and the inevitable silicone breast implant needed to fill out my left side. I made it through 11 hours of liposuction to reduce the tension on my surgical scars to prevent them from opening continually (a problem I had to address with at-home wound care for a year).

All in all I lost my left latissimus dorsi muscles, a quarter of my abdominal muscles; all sensation in my breasts, most of my abdomen, most of my back, and my nipples seldom if ever become erect. But my risk for another round in the ring with breast cancer has been slashed. And I can live the life I want. It’s been worth it to me.

So the next time you want to celebrate Boobie Wednesday, send out a tweet an hour reminding women to perform self-exams, to get mammograms, see their doctors on a regular basis. Support community clinics that provide reproductive care to women without health insurance or who are on Medicaid. Tweet that there is life after breast cancer. That women are still sexy beasts after breast cancer. That a reconstructed breast is as kick-ass as a “real” breast. Tweet out that breast cancer doesn’t have to be more than a scenic stop on the road of life, if preventative screening measures are taken.

Use your Wednesday to educate those in your life and your Twitter stream about being proactive in their health care. You can get up in your boobies’ business during your self-exam. Believe me, they’ll thank you for it.

 

UPDATE: See related posts “Post-Boobie Wednesday” and “Let’s Talk About . . .

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