Chapter Three: One Man-made One God-made

Chapter Three: One Man-made One God-made

In the decision-making days before the mastectomy, I tried to think more clearly and long-range than ever before in my whole life. What should I do about joining The Clan of the One-Breasted Women? I could not remember where I heard the phrase, but it stuck in my brain. What will it be like to spend the rest of my life with just one breast? Should I wear prostheses, get implants, have reconstructive surgery? What will be the best for me psychologically and physically now and in twenty years?

            I had three days to decide whether to have some type of reconstruction done at the same time as the mastectomy. How does one go about making such a decision in three days? I needed a crash course. So, I gathered all the printed material I could and talked to as many women as I could find who had faced this decision before me. The first question I needed answering was “Can’t I just go flat or maybe put a shoulder pad or stuff cotton in my bra?” The answer was simple. Following a mastectomy, a woman must compensate for the lost weight of the cancerous breast that was removed. The spine and shoulders need equal weight on both sides of the body. Okay, I guess doing nothing wasn’t an option. What were my choices?

            Choice number one—prostheses. Breast prostheses come in a variety of sizes to match the weight and shape of the remaining breast. The prosthesis fits inside a special bra, which has a pocket. There are women trained to fit mastectomy patients with prostheses in most large cities, and most insurance companies will pay. There are even swimsuits and nightgowns with pockets to accommodate prostheses. Without debate, this is the simplest, cheapest, least invasive, and risk-free choice. And all other options are still available if you try it and don’t like it, except having whatever you choose done at the same time as the mastectomy. Having one surgery sounded better than two.

            Choice number two—the implant. Implants come in saline or silicone. They look much like prostheses and are surgically implanted under the skin. Another type of implant is an expander, which is also surgically inserted under the skin. At intervals following after surgery, saline is injected into the expander through a valve that is left exposed. As the saline is injected, the skin stretches much like it does during pregnancy, so that in months (perhaps a year depending on the size needed), a new breast is formed to match the “real” one. This is a much more expensive procedure in every way—time, money, pain, stress, and invasion of the body. But it is attached to the body and is there day and night.

Choice number three—TRAM flap reconstructive surgery. This type of reconstructive surgery takes the patient’s own tissue—skin, fat, and muscle from another part of the body (the abdomen, back, or buttocks) to form a breast.  Sometimes the needed accompanying veins and arteries to support the tissue are tunneled to the breast area.  Sometimes this support system is attached with microsurgery. The most common of this type of reconstruction is the TRAM flap. The American Cancer Society explains the TRAM flap in a chapter titled, Transverse Rectus Abdominous Muscle (TRAM) Flap (Tummy Tissue). (I’m not sure if this surgery is done much anymore.)

“The TRAM flap procedure uses extra tissue and muscle from the lower tummy wall. The tissue from this area alone is often enough to create a breast shape and an implant may not be needed. The skin, fat, blood vessels, and at least one of the abdominal muscles are tunneled under the skin from the abdomen to the chest area. This procedure results in a tightening of the lower abdomen or a 'tummy tuck.’” This, of course, is the most invasive, expensive, and painful but also the most permanent, if the patient gets a good result. The selling points of the TRAM flap are: the patient gets a tummy tuck; the breast is the patient’s own tissue, so there’s nothing to reject; the new breast will gain and lose weight with the rest of the patient’s body, and it is permanent.

With that much information, I began to talk to different women about their levels of satisfaction with the choices they had made. I called a neighbor whose daughter had recently died of breast cancer and asked my question. At first she was hesitant to discuss her situation fearing it would frighten me. After I assured her that I needed to know, that facts help, she shared her loss. She told me that her daughter died about 14 months after diagnosis. She told me about trying to take the place of her daughter in her grandchildren’s lives. She told me how much they all missed her, and then said, “But all you asked was what Carol did about having only one breast.” She interrupted herself and asked, “First, may I tell you how I felt about her losing a breast?” I nodded and she continued. “A few days after the mastectomy, I walked into Carol’s hospital room. She was sitting up, kind of propped up against many pillows. She had on a hospital gown…” she paused to regain her composure. “She had on a blue hospital gown, and it hung straight down—I mean—there was no breast on her right side. I couldn’t bear it. I had to walk around the hospital for nearly an hour before I could go back in and talk to her with some degree of composure.” She said that Carol’s decision about any reconstruction was really made for her by the diagnosis. “When the diagnosis came back, it was so terrible—6 months to 1 year, that Carol elected to wear a prosthesis because she didn’t want to spend what little time she had left recovering from surgery. At that point, the loss of a breast seemed quite insignificant.”

A woman who heard about my cancer came to visit. I asked her the question. Her mastectomy was thirteen years ago. She went, as she expressed it “flat on that side” for the first few years. She said that about ten years ago her self-esteem and body image were at a low point, and she thought that having an implant would help. But she did not have a good result. The implant leaked, caused soreness, and then became infected. She has since had six surgeries to correct the problems.

I called Andrea who you will meet in chapter twelve who has experienced both saline implants and the microsurgery TRAM flap. I asked her opinion about both. She explained that she had cancer in both breasts and, at the same time as the double mastectomy, elected to have saline implants implanted. Her situation was such that the surgeon saved all the breast skin and her nipples and removed only the breast tissue. She said they looked good but were a constant source of pain, and whenever someone hugged her, they bounced off of her. She decided to have the implants removed and have a double micro TRAM flap reconstruction. She explained that she got such a poor result from the TRAM flap that she now has to wear two different prostheses—one size 2 and one size 7 to look normal.

My cousin’s wife shared her story. She had her mastectomy fifteen years ago. Prostheses were great—no problem for her. Of course there were the funny stories about forgetting it, or having it float up out of a swimsuit, or having it move to a new location on a day she was wearing a fitted sweater, but she was very happy and content with her body the way it was. Being a member of the one-breasted clan was a badge of courage for her.

            A young mother called. She told me that her mother died of breast cancer when she was eighteen. I asked her the question. She explained about the funny bras and prostheses her mother wore. “Was it a problem?” I asked. “The only problem that I was aware of,” she said, “was that Mom couldn’t tell if her shoulders were even or not. We made up a series of hand signals so that in public, I could let her know which shoulder was too high.

Another woman said, “I just went for my sixth expansion with my implant. My doctor keeps telling me that I’ll be satisfied with my new breast when I’m fully expanded, but as of right now, I don’t like it.  Twice after expansions, I felt like my body was rejecting it. The pain was terrible. I complained to the doctor telling him that it feels just like there is a metal plate in my breast. He says there is a metal tube that will be removed after the last expansion.  He assured me that it will be wonderful when it is all done. But, I wish I had never had it done. It’s been seven months since my mastectomy. I feel like tearing the thing out and throwing as far away as I can. I want it out. I feel that I didn’t get enough facts. I should have tried the prostheses way first.”

            Another friend called to warn me against having reconstructive surgery. She wanted me to know with certainty how she felt. She said that reconstructive surgery was vanity, pure vanity. She said I should be more concerned about saving my life rather than having a second breast. “Use your energy to fight the cancer.  Don’t let pride get in the way.”

            I was referred to another mastectomy patient who had both TRAM flap and nipple reconstruction. She was completely delighted with the TRAM flap but not with the nipple. She wished that she had quit while she was ahead because she got a good result from the TRAM flap. The nipple surgery was several months later and involved grafting the necessary skin from her thighs. She said the nipples are not centered—one is too high and the other too low. She said she can’t look at herself in the mirror. “I look freakish,” she sighed.

The Decision

            Armed with that information and after talking at length with Richard, I reasoned this way. First, there was too much negative in the news about implants; so I eliminated that as a choice without much consideration. The expander sounded like a very uncomfortable and lengthy process. I wanted to get this stage over and done with as quickly as possible. Going the prosthesis route was the easiest and cheapest, but I did not know if my husband would mind being married to a one-breasted, scarred up woman, even though he insisted that it wasn’t a problem. I was concerned about getting in the shower every day for the rest of my life and looking at the scar where a breast should have been. I didn’t know if with a properly weighted prosthesis, I’d have to worry if my shoulders were even or not. The idea that breast reconstruction was vanity and wasted precious energy concerned me. I asked my surgeon if the TRAM flap was vanity. He asked me where I got that idea. As I told him, I could see that he was becoming angry. I’ve never seen a doctor mad before. He even volunteered to call my friend and explain the truth. “Reconstructive surgery is hard on the body, “ he conceded, “but,” he paused, “before I go on, tell me why you are thinking of reconstruction.”  I answered, “So I can forget.” “That’s it, that’s it, that’s exactly it,” he exclaimed. “Sure you have a longer recovery. Yes, you have a scar from pelvic bone to pelvic bone; it’s true the new breast will have no nipple (that takes a separate operation), and yes, a longer, more involved surgery is more of a risk. But, vanity—absolutely not. In a few months, the breast, since it’s all your own tissue, will move with you. It will gain or lose weight with you. It will feel like a real breast. With a bra on, no one will be able to tell the difference.  That’s why we do it. So you can forget and get on with living.”

            I realized from all these varying opinions, even more than detailed here, that I couldn’t please everyone (a fact I was going to experience over and over); so I chose what my heart and mind told me to do.  As my father used to say, “Do it once; do it right.” I called the plastic surgeon and arranged for the TRAM flap reconstruction to be done at the same time as the mastectomy. But from all the negative I’d heard about nipple reconstruction, I decided that I’d be content with a mound.

            My charming, optimistic plastic surgeon explained the surgery to me in three or four upbeat sentences. He said it was major surgery but, since I was young and strong, he didn’t foresee any complications. He said my hospital stay would be between five and seven days. He acted like it was not a big deal. So one week from the day I had the lumps excised, I was back in the hospital for a left breast modified radical mastectomy and TRAM flap breast reconstruction.

I anticipated that someday I would write about my cancer experiences of which the surgery details would be an important part. But my journal/day planner for those six hospital days is blank. There is a note I scribbled to myself a month after I returned home. “Write about hospital stay.” I didn’t do it for four months. I felt that my plastic surgeon had understated the severity of the surgery. It was worse than I ever could have anticipated.

The Moment of Truth

            I suffered vicariously as I heard the stories from other members of the One-Breasted Clan. I read extensively and tried to prepare myself. But for me, no amount of preparation was adequate. My understanding of how my new breast would actually be a mound instead of a breast was limited. God, the Creator, made two breasts for every woman—but just two to a customer. He made no provision for a cancerous breast to heal and grow back. So my plastic surgeon tried to “create” a new breast for me. The comparison of a man-made and a God-made breast gives me absolute knowledge that God created my body. My man-made breast is a meager substitute for the real thing. Removing the bandages from my man-made breast is a moment for me forever frozen in time.

            Surgery lasted eight hours. My first moments of consciousness after the surgery are a blur. I felt my abdominal skin had been stretched to the point of violently splitting apart if I breathed or even twitched. “It’s so tight,” I remember mumbling. It felt as if someone had cut out a three-inch by eight-inch piece of skin, had tunneled two muscles up out of my abdomen with supporting blood vessels to the chest, and then just sewn me back together—which is exactly what happened. I tried to look at my new breast. It was covered in large gauze bandages and taped from my view. I tried to look at the abdominal area; it too was bandaged and hidden from sight. I could see my navel, however. What had happened to my navel? It was bloody and taped with steri-strips, and it seemed to be changed and off center. The pain was out of control. The nurse taught me how to use the morphine pump. It was barely enough to keep me sane. That first night I could find no relief—no change of position, no amount of morphine, no trying to keep mind over matter. Nothing helped. I saw the clock move every minute of that excruciating, long night.

            Months later, this is what I finally wrote in my journal: “The night after the mastectomy and TRAM flap was the worst day of my life as far as pain is concerned. For the entire night fear and extreme pain haunted me. There was no position of comfort. I could not relax my mind no matter how hard I tried. There were no positive thoughts left in me. I cried. I prayed. About 5:45 a.m., Dr. Grant, a woman resident surgeon, came into my room. She found me scrunched pitifully at the bottom of the bed crying. She quickly analyzed my situation and rescued me. She talked to me for a long time. I was so absolutely fatigued. Then four angelic nurses came and gently bathed me. They helped with the nausea and the pain and turned up my oxygen. I slept for the first time about 10:30 a.m. and awoke about 3:30 p.m. much more in control. I finally learned to use and not fear the morphine pump.”

            Several more pain-filled nights passed. The doctors gradually began to take the supports away—the catheter, the morphine pump, then the monitors, and finally the oxygen. The IVs stayed until the last day.  The heat in the room had to stay at 80 degrees to give the transplanted skin the best chance to grow.

On day four, my nurse came into my room to remove the bandages from my breast. She helped me into the bathroom to “insure privacy.” I asked her if she had seen many reconstructed breasts. She said mine would be her first. “Mine, too,” I said faking a nonchalant attitude. I had planned and prepared for this moment. I was going to be brave. Whatever it looked like, I told myself, was better than no breast at all. I sat on the closed toilet seat, and she brought in a chair and sat across from me. Then she began removing the layers of bloody gauze and tape. When she got to the last layer, she asked, “Are you ready for this?” and took it off. We stared at the man-made breast. We made eye contact. She saw tears running down my face. I saw tears running down her face. She gently put her arms around me as we cried together. I felt as if I were looking at a Barbie doll’s breast. Around the outside edges of the new breast was my old skin, and in the center was a football-shaped piece of transplanted skin from my abdomen sewn in like a gusset. (I recognized it because of the stretch marks I had earned from eight pregnancies.) A nipple-less breast takes getting used to. But, there are some good things about my new breast. It is just the right size and with a bra on, it’s impossible to tell which is the fake. It is permanent. It has the right amount of bounce and fifty-three year old droop. Even though the abdominal skin is a different color than the breast skin and has stretch marks, I’m happy with the breast itself. I am living with some complicating side effects, however.

Repairing

            For the first two weeks following surgery, I had to stay in a C-position—which means I couldn’t stand up because I’d pop open the incision. I had nightmares about this occurring and literally “spilling my guts.” I was instructed to stay in a fetal position, day and night. I did very little walking because standing or walking bent over for very long causes intense back pain. I often resorted to crawling. At my three-week appointment with the plastic surgeon, he gave me permission to start standing up straighter. He said that climbing stairs would become easier as would lifting rather than dragging my feet as I walked. He also told me I could start driving again. Not being able to drive had been confining physically and emotionally. He said I could resume more of my normal activities but no heavy lifting. “What’s heavy lifting?” I asked. “Anything heavier than a gallon of milk,” he answered.

            I asked Dr. Thomas about the hardness of my new breast. He said it often takes several months to feel like breast tissue, which of course it isn’t and never will be. He told me that some mammography technicians think a reconstructed breast is breast tissue. He said my left breast never needs a mammogram. (Well, that’s one good thing. From now on I get half-priced mammograms!)  I asked him about the large, unsightly lump under the new breast. He said that lump was the abdominal muscle he had tunneled up to furnish the blood supply to the new breast. He said he was sorry to report that he had needed two muscles instead of just the one he’d planned on using because I was too thin, and there wasn’t enough tissue to make the breast. The lump looked freakish to me. It showed in some of my sweaters and shirts. I didn’t like this new addition to my figure. It was like having three breasts. Dr. Thomas said that in about a year it would be much less noticeable.

            My biggest discomfort was the abdominal grindings and cramping, which were so continuous that I was often awakened and kept awake at night by the noise. They were, this is the absolute truth, like early labor contractions—harder than Braxton-Hicks contractions. In all my eight experiences with labor, never was there anything as continuous and as long as these contractions. I could actually watch my whole abdominal area moving in continuous motions. Dr. Thomas said he could not help. I’d have to just wait it out. How long? Six to nine months.

Truth and Consequences

            Since I already had a flat tummy, the tummy tuck that came as a by-product of the TRAM flap wasn’t a contributing factor in my decision. I expected, however, to have the most incredibly flat tummy ever. Well, it didn’t happen that way. In the first three months after surgery, my abdomen was swollen and distended so that I could not get on a pair of jeans. But that’s only part of the story. I would have a wonderful flat tummy except that I have an exceptionally large hernia, which is the result of the TRAM flap and the loss of two muscles. According to the reading I’ve done on the subject, between 10-25 % of people who have any kind of abdominal surgery, develop a hernia. No one mentioned this possibility to me as I was gathering facts and making decisions. I have been back to the surgeon. He said that right now my risk of another surgery is greater than the risk that the hernia will strangulate. He also said that if I want to get the hernia repaired for cosmetic reason, such as a flat stomach, that he could not guarantee success. He reminded me that the plastic surgeon had used two abdominal muscles for the reconstruction, and there just wasn’t adequate muscle remaining to hold my intestines in. Oh, great. So I purchased an elastic panty that I wear to hold the hernia in. It works pretty well with skirts and dresses but not as well with slacks. The robbing Peter to pay Paul (taking abdominal tissue to pay for the lost breast) is not an even trade. If I had to make the decision again, I’d try the prostheses route first and give myself time.

I finally remembered to ask Dr. Thomas what happened to my navel. He smiled and said, “Well, when we removed the skin from your abdomen to make the breast, if we’d just sewed you back up, your navel would have been three to four inches too low. So we measured where your waist is and after centering it on level with your nose, poked a hole and pulled your navel up into a more normal position.”    

            From the surgery, I had to get used to a new breast with many stretch marks and no nipple, a relocated navel, a very long abdominal scar, a protruding hernia, and an extra lump under the reconstructed breast. Cancer had definitely brought changes and I hadn’t even started the chemotherapy yet.

Support Session #3: One Man-made One God-made (or two man-made, as your situation required.)

If you already have been able to write the history, here are some questions to help you get thee essential facts on paper. The questions below are merely suggestions. You don’t have to start or complete the questionnaire today or this month or this year. If you don’t feel like writing now, read through all the questions and perhaps jot down notes to jog your memory in the future.

1.     What were you doing the day and hour before you found out that you had a lump or other cancer symptoms? How was the lump discovered? By self-exam? By mammogram? By doctor?

2.     What was the date?

3.     Had you been feeling well?

4.     Did you have any premonitions?

5.     Explain your first thoughts on discovering the lump.

6.     Had you had other lumps? Cysts?

7.     Does cancer run in your family?

8.     Who did you tell about the lump? What were their reactions?

9.     When did you call your doctor?

10.    What is your doctor’s name and specialty?

11.    What did your doctor say?

12.    Did you agree with your doctor’s advice?

13.    Did you have a mammogram? An ultrasound? Another opinion?

14.    Did you have a needle biopsy? Excision? What were “next steps”?

15.    Describe the procedure(s).

16.    Did you feel a sense of calm or panic or ambivalence?

17.    Where were you and what were you doing when you received the cancer diagnosis?

18.    What was the date?

19.    What were your feelings?

20.    How did you tell your family? Friends? What were their reactions?

21.    How did you decide on your treatment?

22.    What doctors were involved?

23.    Where did you go for treatment?

24.    Did you feel the procedures were going to be successful?

25.    If you had surgery(s), write about it (them)? Give dates.

26.    If you had radiation, write about it in detail. Give dates.

27.    Were there special kindnesses shown you?

28.    What memorable experiences did you have?

29.    Did you volunteer to participate in a clinical trial?

30.    What advice did you receive from friends, family, and the medical profession?

31.    Name all doctors and hospitals.

32.    If you had or are having chemotherapy, tell about it. Give dates.

33.    Did it make you sick?

34.    Did you lose any hair?

35.    Did you get mouth sores, head sores, infections, fatigue, etc.?

36.    If you lost your hair, what did you do about hats, scarves, or wigs?

37.    How did you do emotionally?

38.    Were there family members or friends who were especially supportive?

39.    What gifts did you receive? Flowers? Cards? Phone calls?

40.    Did you make any new friends because of the cancer?

41.    Did you go to any support groups? Tell of your experiences.

42.    What books did you read? Where did you go for advice?

43.    Has the cancer changed you? In what ways?

44.    What would you do differently? Why?

45.    What advice will you give other cancer patients? Why?

46.    Are there doctors or nurses or technicians who helped you or treated you especially well that you want to remember?  Who? What did they do?

47.    What were the best and worst moments of your breast cancer experience?

48.    Write about your breast cancer from a spiritual point of view.

49.    In what ways are you different than you were before your diagnosis?

50.    In what ways are you grateful for the experience?