Every August 11th, I celebrate the anniversary of my left�side mastectomy, an operation that marked a significant and joyous turning point in my life.
This book relates some of the facts surrounding my experience with breast cancer as a disease and some details of my particular type of mastectomy. I'll tell you how I discovered the cancer, the steps that were taken to rid me of it, what kind of pain I had after the mastectomy, and what the aftereffects of the operation have been.
Then come additional musings, all with a highly personal slant, on the whole tangle of related subjects: fear of surgery and death, the inevitable "Why me?" question, femininity and body image, sex and breasts or the lack thereof, cancer as measured against other types of health problems, the tremendous value of emotional support from others in times of crisis, our wonderful 21st�century openness about illness, and more.
I want to state at the outset that I in no way intend to say to other breast cancer survivors or patients: "This is the way you should feel. This is the way you should react. This is the path of treatment you should select." Absolutely not! Your emotions and reactions and medical choices are your own.
If my words can be of help and encouragement to other women who have gone through the same experience or who are going through it now, then that will be a rich reward. However, this book is primarily for the many women who have not yet developed breast cancer but who will in the future, as well as for all the others who fear they might develop it. I've written this book to tell them that breast cancer does not have to be counted among the greatest traumas of their lives. Instead, with luck, they can go on living and doing all they did before. They can come out on the other side of the experience better than they were before, both healthier and happier.
I know this is true, because it happened to me. What follows here is the story of how.
In late July, between my diagnosis and the scheduling of the mastectomy, the fear of death began to creep into my consciousness. This operation would be quite different from anything I had ever had done to me before. All my other surgeries had been to correct what I would call mechanical problems, not to treat life�threatening diseases. Also, I was younger and stronger when those other surgeries were performed.
By 1998, I was middle�aged, menopausal, and at least 25 lbs. overweight in spite of regular weight training and walking. This time, I found, I had a distinct fear of dying of a heart attack or stroke while under the knife. So I made a list of some of my possessions and the people who would receive them if I died, and I planned a quick trip to Kansas City, Missouri, where my mother, four of my five sisters, and several members of their families live.
Perhaps it was some manifestation of their own fear of breast cancer, but once I informed my mother and sisters that I would have a mastectomy, I found that they were not in agreement with my decision. They thought I should elect a lumpectomy plus radiation treatment, presumably because that is what they themselves would choose unless they had no other option.
In fact, a year later, my mother did choose lumpectomy and radiation as the treatment for her own breast cancer. Given her advanced age and heart problems, a mastectomy would have been too dangerous for her. I'm happy to report that she recovered well and is still alive today at the age of 92. So there's a good illustration of why you have to base your own medical choices on your overall health, your age, your type of illness, and a host of other circumstances. Most certainly, one treatment does not fit all.
In contrast to my family members, virtually all my friends here in Denver applauded my decision to have a mastectomy and said they would do exactly the same. I found the discrepancy quite odd, as well as disturbing. I wanted and needed my family's love and support, but it seemed that I could not make them understand why I was choosing to have a mastectomy, and they seemed puzzled and at times even annoyed by my relative calm and optimism. After the surgery, I encountered a few other people with the same attitude. It was almost as though some people were disappointed that the entire experience was not more traumatic for me.
I certainly didn't want strife with my family just then. We had had far too much of that the year before, after they had all read manuscript copies of my one novel thus far, Apart from You. (The book was published by Wildside Press in June 2000, and the revised edition was published in 2010.)
Several members of my family objected violently to certain parts of the book. Our discord reached such an unpleasant pitch, and hurt me so deeply, that I wonder to this day whether or not my prolonged emotional pain had anything to do with my getting cancer. That is, I think my intense and protracted inner turmoil may possibly have lowered my resistance to what was lurking in my genes.
Was there indeed a connection between my hurt feelings and my getting cancer? That is most likely an unanswerable question. And in the years since my surgery, the simple passage of time, as well as many subsequent instances of warm contact and communication with my family, have blunted my painful memories of the unexpected strife regarding both my novel and my health choices.
It's an unfortunate family indeed that can't eventually get past upsetting details and disagreements — even though some of those disagreements may be, at the time they arise, true mountains rather than molehills.
There was no thought of not seeing my mother and sisters before my operation. The last�minute plane ticket cost me a scandalous $830 for a trip that had the passengers in the air for all of 75 minutes, but I paid the money and went for a visit over the weekend of July 24.
I'll never be sorry I did. We talked very little about my disease or the coming surgery, and I found myself grateful for that. Instead, we did a lot of talking about other (mainly family) matters, a lot of comforting eating, and some sightseeing.
Almost every visit I make to Kansas City includes a visit to the fabulous Nelson�Atkins Museum of Art and its interior garden restaurant, Rozzelle Court. That trip was no different. Surrounded by the glory of art and artifacts from the long�ago past, it was easier to distract myself from my uncertain present and future.
Even with the constant pain I still had from the surgical biopsy, even with some still, solemn moments alone with myself and my thoughts when sitting in the bathtub every morning, contemplating the breast that would soon be gone, the visit as a whole was truly joyful.
Even the weather cooperated. I had expected the usual brutal, humid heat of late July in the Midwest. I grew up mainly in South Bend, Indiana, so I was well familiar with such heat. But during my visit, there was a prolonged, very cool wet spell. The nightly rain on the old farmhouse, the home of my older sister Margot and her husband, was immeasurably soothing.
At Monatco, the metal fabrication job shop in Kansas City, Kansas that my brother�in�law Timm Ferguson ran, I chatted briefly with his parents, Glenn and Colleen. They had not yet been told the reason for my short, previously unannounced visit. Colleen was her usual bubbly, loving self, giving me a big hug and complimenting me on my new, very short haircut, telling me that it made me look "young and perky." It was a lift I needed.
Sadly, that was the last time I saw either of Timm's parents alive. Colleen died of heart failure in late January 2001, and her grief�stricken husband followed her to the grave just a few weeks later. And only eight years after that, their son Timm, my sister Margot's husband of 40 years, died of lung cancer.
Oh, readers! If you love them at all, hug your parents and your in�laws whenever you can. You never know which embrace will be the last.
On July 27, when I was about to board the plane to go home, I felt a much deeper fear of death than I had until then. It was difficult for Margot and me to say goodbye to each other.
She hugged me very hard as the tears spilled down my cheeks in spite of myself.
"It'll be all right," she said. "I know it will." But she was crying, too.
"I'm not sure of that," I replied.
Then I had to go.
* * * * *
A few days later, there was another social occasion, a thoroughly cheerful one.
I've taught weight training classes since 1976. Nowadays I teach in the basement of my home, rather than in a commercial studio. Until a few years ago, three of my students were a woman named Peggy Dinkel and two of her grown children, Laura Arundel and Vanessa Caniff. Another of Peggy's daughters, Julia Dybdahl, used to attend my classes as well. On August 2, 1998, Peggy celebrated her 65th birthday. Vanessa had turned 30 the day before. On Peggy's big day, they had a huge barbecue at Julia's house, and David and I were invited.
For several hours, we all ate, laughed, and celebrated life and family love. Watching the many children at play, I was filled with a powerful sense that life goes on no matter what happens to any single individual. The whole of it is much greater than the parts.
The few women at the party whom I told about my cancer and the coming operation — then only nine days away — took it all very calmly and nodded their enthusiastic agreement regarding my decision in favor of a mastectomy with no reconstruction. "You're right," they said. "That's just what I would do in your position." It was needed reassurance.
David and I have wonderful photos from that day, a few of which I still keep on the refrigerator. I captured David playing with the Dybdahls' little black dog, Princess. Two of Peggy's young grandchildren, Emily and Ian, spontaneously plopped themselves into my lap for a photo. It was as though I were a favorite aunt, instead of a stranger to them. The happiness that radiates from all our faces in the resulting picture gives me another sort of reassurance every time I look at it.
Trust. Affection. Love. Celebration. These are universal constants, and they will endure past every misfortune.
The evening before my mastectomy, David and I went out and bought a Polaroid camera. We did not yet own a digital camera, and we knew that no commercial lab would develop the photos I wanted him to take: pictures of my naked body, whole for the last time. I wanted not just memories of that body, but clear and lasting evidence of the old image of myself.
In the photos, there is no sign of the disease itself. Nor is there any sign of the fear and uncertainty I felt.
The simple, grainy little pictures that resulted from that evening's photo shoot would never pass as art. We made no effort to glamorize or soften the images in any way, to make me look like anything other than the middle�aged, somewhat overweight woman I was and still am. I simply stood there unclothed, in the bathroom and then in the hallway, and let my beloved husband and the technological wonder in his hands capture my Before, the body he had known and loved for over 30 years.
That evening, neither one of us had any firm idea of what the After would look or feel like, or how either one of us would react to the changes. And so both of us wanted those pictures, evidence of how I was on that side of a great divide in my self�image and my life.
Photos of my post�surgery body would come later. Somehow, we wanted and needed to document the entire process.
There are the pictures taken the night before the surgery. There's one of the thick bandages and the drain tube and its attached bulb that I had in me and on me for three days after the surgery. There are pictures of my body freed from the bandages, unflinching pictures of my naked chest and its big red scar.
Then, two years later, came photos of my chest all healed, my body several pounds heavier but quite strong again — and my broad smile, reflecting my new joy and inner peace.
After a certain point in my recovery, when my chest was no longer so sore, I realized that I was no longer content with looking so lopsided. It was one thing if I was in the privacy of my own home, or if I was sleeping, showering, or teaching exercise classes. (I don't usually wear any kind of bra when I'm lifting weights, as it feels too confining.) After a while, however, I found that I felt rather self�conscious about my appearance when walking around outside the house or teaching in a public place.
If I had had a double mastectomy, perhaps I would have felt differently. As I mentioned earlier, if I were to lose both breasts, I'm pretty sure I would elect to wear prostheses most of the time, but to go braless and flat�chested at other times, especially in the summer. I very much dislike hot weather, and as every woman knows, any bra, even a cotton one, adds significantly to summertime discomfort. It's amazing how the little things can hold in body heat.
But only my left breast was gone. Especially in T�shirts, that was quite apparent. So, in June of 2000, I finally went out and got four mastectomy bras and an Amoena prosthesis.
For the initial purchase of such things, Dr. Brew had recommended a woman who comes to the customer's home for a private fitting. However, I was not self�conscious about my need for this special shopping experience. So, figuring that buying the bras and prosthesis at a retail store might be a less expensive option, I opened the phone book and started looking.
It wasn't too hard to find a store here in Denver that sells such things. I selected Treva's. I was more than a bit surprised to learn that they sold mastectomy bras and prostheses, as I had heard the store's name before only in connection with sexy lingerie. And others may feel otherwise, but I think a sexy mastectomy bra is something of an oxymoron.
In any case, I wasn't seeking a bra that looked sexy. I wanted one that fit well and was comfortable. Exactly what the prosthesis would look and feel like, I had no idea, never having seen one before that day.
I was in for a number of pleasant surprises. The first one was the overall demeanor of the tall, elegant young woman who waited on me. There was no pity in her attitude, which was a relief to me, as I didn't want that. I wanted what I got from her, which was good and efficient service.
When I told her what I needed, she merely said, "All right. Step into the dressing room, and we'll take a look." What she had to look at, of course, was my bare chest.
It took her only a quick glance to see what size prosthesis she needed to select from the storeroom. The little sack of silicone that she brought back with her fit me perfectly. It was remarkably like my right breast in size, shape, weight, and even color. Once the prosthesis was inside a smooth, beige mastectomy bra and on my body, I was surprised and very pleased to see that my torso looked absolutely normal.
The only drawback to the prosthesis was its $330 price tag. However, it came with an excellent guarantee. It also came in its own little house, which I later nicknamed "the boob box." It's a cardboard box with a concave spot in the center of a hard plastic insert. The prosthesis has to rest in the insert overnight, point�side down, so it will keep its youthful shape. (Along with me, you're probably thinking it's too bad there isn't some device that works just as well for preserving the original shape of real breasts!)
The selection of more bras took the most time. I selected a total of four: two beige, one black, and one white. Their prices, at least $40 each, struck me as a bit excessive for what were essentially simple, regular bras with interior pockets sewn into them to hold prostheses. But what choice did I have? It was clear that an ordinary bra could not hold a prosthesis in its proper position, and I could tell right away that the plastic covering of the prosthesis would feel clammy and uncomfortable next to bare skin. Obviously, the interior fabric pockets are an essential addition.
Interestingly, the pockets varied rather widely in their design. In the two bras that were the same style, the black one and the white one, the design of the pockets made it quick and easy to insert the prosthesis from the side. In the third bra, the smaller hole in the side of the pocket made the insertion a little more challenging, requiring more compression and more careful maneuvering of the prosthesis.
The last type of pocket, which allowed the prosthesis to be dropped in from the top, was a bit too loose, I decided later on. It allowed the prosthesis to shift around more than I would have liked once it was on my body, so I ended up not wearing that bra very often. It could be rather disconcerting to notice in a mirror or shop window that my left "breast" was no longer exactly where it had started out that morning!
I found an alternative use for that particular bra, though. When I traveled, I would leave the bulky boob box at home but take along the bra with the loose pockets. At night, I would put my prosthesis into the bra and hang the bra on a hanger in the closet. There the prosthesis would rest all night, in more or less the position it assumed when on my body.
For the past few years, I have had another Ameona prosthesis and different bras, in two styles that hold the prosthesis in place quite well. Also, the box in which my current prosthesis rests is a so�called travel box: still very sturdy, but not as large as the cardboard box in which my first prosthesis came. It also has a zippered fabric cover which keeps it safely closed no matter how much my luggage might get tossed around.
To sum up: I would advise any woman seeking her first few mastectomy bras to be on the lookout for bras with pockets that allow fairly easy insertion of the prostheses but which also hold them firmly in place. In short, try before you buy. Stand, sit, bend over, and walk around in the bra. Move your arms around a bit, as much as you would naturally in the course of the day. Carefully observe what happens to the prosthesis during all of this. Then make overall comfort your number one criterion before you buy. Your chest will probably remain at least somewhat more sensitive than it was before your surgery, and you want a bra that will pamper it.
The day I bought my first mastectomy bras, I walked out of the store feeling wonderful, confident that my clothed chest looked normal again. The pink knit sports bra with a couple of David's handkerchiefs stuffed into the left side had been better than nothing, but just barely. That afternoon, I think I stood straighter and strode along more vigorously than I had at any time since my operation.
From there, I went to a shoe store, where I found a beautiful pair of black shoes to go with the new red dress I had ordered from a catalog. And what was all this finery for? It was for my first book signing plus reading, which was to be held to showcase my just�published novel (Apart from You, mentioned above), as well as my husband's fourteenth book and first mystery novel, The Cavaradossi Killings (now available as an e�book from both Amazon and Smashwords).
The reading and signing event was held on June 24, 2000, at the Denver Book Mall. The hosts were Nina and Ron Else of Who Else! Books, a specialty bookstore which, at that time, had its own section inside the cavernous, attractive old building at 32 Broadway. (Nina and Ron have since moved their store to the Broadway Book Mall, at 200 S. Broadway.) Thanks to the enthusiastic attendance of large numbers of my language and weight training students, as well as many other friends, the event was a huge success. Nina and Ron told us later that it was the best�attended reading they had ever hosted.
A week before I stood at the lectern and knew for the first time the thrill of being a published author reading from her own book, I had a curious but reassuring dream. I dreamed that I was inside the store and the reading was to begin in a few minutes. I was making my way through a large crowd toward the lectern, smiling at all the attendees, wearing my lovely new dress.
But the top of the dress was down around my waist. My chest was bare, my still pink scar on view for all to see.
In the dream, I smiled and held my torso upright, quite unafraid of the other people's glances. For in my hands was what mattered the most to me: my work, my novel, recognized and born to the world at last. I held the book proudly. It was beautiful, a joy to behold and to hold. What had happened to my body was insignificant by comparison. I was saying, with my self�presentation if not with words: "Here I am. Look, everyone, and see me as I am now. Read my novel, the product of many years of work. Then judge for yourselves where the real beauty lies."
That reading was one of the happiest times of my entire life — and the top of my dress, of course, stayed right where it belonged.