Chapter Ten: Survivors Patti, Joanne, and Helen

Chapter Ten: Survivors Patti, Joanne, and Helen

            Patti:  My first sign of breast cancer was when I found a tiny lump about the size of a pea. I was drawn to it. I would press on it and feel it every day, and it hurt like a bruise. I thought it was a vein that was poking out. It felt like when I was engorged nursing. I also had pins and needle sensation with it.

            I was forty-two. I never did think breast cancer, but after a month of this bothering me, I called my family doctor. He told me to come right in. I could see immediate concern when he checked me. He called and got me an appointment for a mammogram. I went there immediately from the doctor. It showed nothing. They said I was fine—no lumps, nothing to be concerned about. My doctor wisely sent me to a cancer specialist. My daughter, then 17, went with me, as I’m divorced. I’m glad she was there with me even though it scared her. The doctor checked me. I could tell he was concerned. He did a lump removal biopsy in the office and sent it for tests. Less than an hour later he called us into his office and said, “You have cancer!”

            We were both shocked. He recommended a lumpectomy. Two days later I went in and had a lumpectomy with 26 lymph nodes removed. None of those turned out to be positive so the doctor said I would just need radiation. That’s all. Ten days later as I went in for follow-up and drain removal, he said, “You’re having chemotherapy.” I couldn’t believe it. It was the thing I feared and never wanted. He said I was estrogen receptor negative which meant a higher chance of recurrence. I then saw an oncologist who said I had a 50-50 chance of needing chemo. I decided I would do everything I could. I started radiation, which wasn’t bad at all for six weeks, but the chemo was bad.

            It all started out all right, but it got harder to find veins. I got sicker and sicker until the last month I could hardly go. I was even sick on the way there just thinking about it. I went every Friday for six months except a couple when the doctor was out of town, which I was thankful for. I lost hair but my hair is real thick so I didn’t lose enough that people noticed. It was hard also because people treat you like you are already dead.

            I made it through this because of a lot of prayers and faith. All this—diagnosis, surgery, radiation, chemo, happened so fast that I just did it. I’m the kind of person who can make up my mind and just do something; so I just did it like doing the dishes every day. The worst part after was the aches and pains here and there that made me think my cancer was somewhere else. I had about three different times I would tell my kids that I wasn’t going to make it.

            I called the cancer society towards the end of my treatment because I felt a need to help. I volunteered calling people to see how they were doing. I also got into support groups and did this for awhile until I felt all I was doing was thinking about cancer. I had to get away from it and get my mind off it. It has now been ten years and I feel great. I’ve had no sign of recurrence. I love to talk to people who are going through cancer. I feel much hope from my experience. I have a love for life and more empathy for others and their problems. I feel driven to help others.

            People for years would come up to me and say, “How are you?” like they were afraid to ask, and when I would say I was fine, they’d say, “Are you really?” I hated being treated like, “Poor me.” I always hated having people have to help me. Cancer was a hard experience in that way.

For years I couldn’t forget I had cancer. Now weeks will go by without my even thinking about it. I never do unless I get a backache or something like that, or it’s time for my check-up. Time really does heal.  My biggest fear is to have chemo again. I don’t know if I could do it a second time.

            This whole experience has made me want to do whatever sounds fun, now! I’m always willing and ready to take a trip with family or friends. I used to save every penny and never dared spend. Now if we want to go somewhere we go, no matter how much it costs. I feel like living life while I can.

            (Update on Patti. After Patti shared her story with me, I lost track of her and have been unable to contact her. Perhaps she is remarried, having a new last name would explain why I can’t find her.)

Joanne:  CANCER?…..the big “C”?…..not me!….. never? That happens to other people. My good genes won’t let that happen? I have always been so healthy. I am invulnerable!!  Well, that’s what I thought.

My story has two parts. The first begins with the discovery, during a routine pelvic exam in January of 1995, of a 13-centimeter tumor in my abdomen. Immediate surgery was indicated, not only to remove the tumor but also to have a complete hysterectomy. How could I not have known this huge mass was there? I do remember feeling generally uncomfortable with some distress in the abdominal area, which was what led me to have the exam. The news of the tumor left me stunned but grateful it had been discovered. My doctor hastened to assure me that the mass was very soft, and he felt reasonable sure it was benign. Four days later, after surgery, I was told that the tumor was so entangled inside that it burst while being removed. All precautions were taken to cleanse the pelvic area. The pathologists pronounced the mass benign, but later inspection of tissue revealed there were focal points of cancer and that chemotherapy was needed. This news, needless to say, was a shock!

However, through all of this I must confess I felt superbly calm and at peace with the decisions made. I had total faith in my doctor and his recommendations. Dr. Bernie Siegel in his book, Love, Medicine & Miracles: says four faiths are crucial to recovery from serious illness: faith in oneself, faith in one’s doctor, faith in one’s treatment, and faith in one’s spiritual beliefs. I’ve always been a positive person, and it is my firm belief that a good mental attitude is essential to healing. Dr. Siegel also says our state of mind has an immediate and direct effect on our state of body. We can change the body by dealing with how we feel. I refused to give in to melancholy. I embraced the idea that whatever we were doing was going to work. Of course, it would work, but if it didn’t, well, we would have tried hard. Then we have the courage to accept the results. Success and optimism exhilarate and build up the physical just as gloomy contemplation weakens it.  I thought, I’ll meet this challenge, and with the help of the Lord, I’ll make it!” Healing was rapid and I returned home in three days.

Chemo was a series of four intravenous treatments, once per month. The chemicals were Cytoxan and Carboplatin. I used Zofran and Dexamethasone for nausea. I experienced no hair loss, no real nausea, and only a slight queasy feeling. I sailed through beautifully.

I continued to have periodic check-ups with pelvic exams and a CA-125 test, which measures a protein in the blood called a tumor marker that can be produced by ovarian cancer cells. Normal range for CA-125 is 0-35. Everything had good results until October, 1996. This was my last six-month check-up. I had hoped to graduate to yearly check-ups. Shortly after the October visit, the doctor called and told me that the CA-125 test was elevated to 68. He was concerned and wanted to run the test again. I was flabbergasted. Of course, it had to be an error. But it wasn’t. . . and now, part two of my story begins.

By the time the rerun was completed in early November, the level was 89. The doctor found two golf-ball sized tumors. He showed me the CAT scan. One was high in the abdomen and was low. Instead of surgery, it was decided that I would undergo chemo again. This time I would receive a series of six treatments, one each month for six months. They would be intravenous but would have to be administered in the hospital continuously over a two-day period. Side-effects I could expect were hair loss, chills, fever, loss of hearing, ringing in the ears, flu-like aches, fatigue, constipation, nausea, vomiting, numbness and tingling in hands and feet. Chemicals used: Taxol and Cisplatin, with Kytril and Dexamethasone for nausea. I had another reality jolt when I checked in the hospital and looked at the admittance sheet. There it was officially on paper in black and white—ovarian cancer.

This chemo experience was every bit as bad as I imagined it would be—the worst kind of sick. I experienced just about all of the side-effects—deathly nausea, blinding headache, chills, fever, shortness of breath, mouth sores, loss of hearing, ringing ears, constipation, every bone ached. I was down for the count. I was so sick I was afraid I was NOT going to die. I couldn’t believe I was so weak that I could hardly standup.  My heart would pound and I’d get out of breath after walking just to and from the bathroom. Loss of hair came two weeks after the first treatment, followed a little later (unhappily) by eyebrows, eyelashes, and eventually all body hair.

I looked through bleary eyes at the flowers blooming across my bedroom border and thought, “Well, this is it. I’ll never garden again. I’ll never plant flowers. I won’t need to shop for new clothes and forget travel. But somehow I began the ascent out of the pit and soon I was making plans. How wonderful to feel ordinary again.

This is the end of my story. My levels have steadily decreased to 13 at this point. What worked for me was being able to see positive results almost immediately with the CA-125. Thank heavens for this procedure.  The future is uncertain but I will stay positive. Although this experience was totally unexpected and traumatic for me, I realize that there are many out there so much worse off than I. But this is my story.  I have to deal with what has invaded my body in the best possible way for me.

I have been sympathizing with an uncle who has terminal cancer. The thought occurred to me, “What would I do in his place. How could I face that in my life?”

How deeply grateful I am for choice friends and family who are constant sources of strength and whose love and support are keeping me afloat. I treasure the power of prayers in my behalf, granting me peace of mind and courage to meet the future. A thought from a cancer book expresses my feelings. “Cancer might rob you of that blissful ignorance that once led you to believe that tomorrow stretched forever. In exchange, you are granted the vision to see each today as precious, a gift to be used wisely and richly. No one can take that away.” (Written September, 1997). 

(Update on Joanne. She continued to fight the cancer successfully but died on December 30, 2003 in a house fire.)

Helen:  It didn’t feel normal—a lump in my left breast—not very big, but hard and close to the surface. It was very near the nipple. Nothing I should fuss about I thought just good to be aware of. The lump didn’t go away, and by the next month, it not only didn’t feel right, it didn’t look right either. My nipple started to pull in and to one side—just a little but enough to notice. I thought I’d better have it checked. My doctor examined me briefly and assured me it was only a cyst and not to be worried about it. He sent me home with no further explanation or direction. He’d been my family doctor for almost twenty years and a personal friend longer than that. Surely he had my best interest at heart. He had a very busy practice, a great medical reputation, and was a caring guy. I should have felt I was in good hands. Why didn’t I?

            The next two months were clouded with doubt and concern. I had never been sick much and brushed off any little health problems as nothing serious. I had a healthy lifestyle. I was forty-two and the mother of six children.  I felt slim, vigorous and on top of the world. I had regular check-ups and felt healthy. Why did I doubt my doctor’s diagnosis when I felt physically fine? By the third month, my nipple had pulled in and to the left so much that vanity supplemented my gnawing medical uneasiness. I needed a second opinion anyway and thought even if it was just a cyst, I should have it tested. Besides, I just wanted the lump out of there! If surgery was required, I wanted a good job, so I decided to get my second opinion from a plastic surgeon. I had had breast implants put in just a few years before this time. Having completed our family and getting nursing behind me, I thought this was the time for “reshaping” and getting a new lease on my body for the prime of my life. I trusted my plastic surgeon completely. After looking at my breast for less than a minute he said, “This doesn’t look good, Helen. I want you in for a biopsy tomorrow morning.” He never mentioned the word cancer but I knew that was what he was thinking. My prayers increased in intensity and sincerity.

            I didn’t want to worry my husband unnecessarily, so I waited until the next morning and while getting dressed, I causally asked if he would mind giving me a ride home from the hospital later that day. I tried to assure him that I was okay. I explained that the biopsy was just a second opinion. I never said the “C’ word either, but he knew what I really meant as well. Actually, I was quite calm at this point. I felt good that my doctor took my concerns seriously and didn’t brush me off as though I were a hypochondriac with no valid awareness of my own body. I knew the lump wasn’t right and felt he showed proper concern by ordering a biopsy rather than just simply suggesting surgery as a cosmetic cure.

            My children ranged in age from 7 to 17—four of them were teenagers. They all needed me. I especially thought of my “baby.” “My Sunshine” I’d call her, and she was. She was a delight to me every moment. I had to be around to raise her. She was the concluding reward of years of motherhood. I couldn’t miss that. But was I going to? These were the thoughts that hung over me as I contemplated and waited for the test results and prognosis. I prayed and waited.  Waiting for the test results was one of the toughest times.

            I remember waking up from the biopsy with the doctor telling me that we couldn’t be sure until the lab completed testing, but it looked pretty certain that the lump was malignant. I drifted back to sleep, still rather calm, thinking, “I thought so. See, I’m not so dumb. Thanks, doctor, for caring enough to follow through correctly.” I wasn’t a hypochondriac. I wasn’t a vain seeker of the perfect beautiful breast. I had a real medical problem, probably cancer. CANCER!  Suddenly the word had new meaning. I was suddenly afraid. This was out of my control. It could take my life. The unknown settled around me like a black cloud.  How bad was it? What could I do about it? How long would I live?

            The doctor called my husband at work and gave him the news. This was the first my husband was even aware that I had been experiencing a real problem. I don’t know how he felt, but he handled it just right. He was aware of my concerns and my conditions. He was there to support me. He didn’t take over for me or tell me what to do and feel. I drew closer to him and found a place open there. I drew closer to the Lord as well.

My parents taught me, “Hope for the best, expect the worst, and take whatever comes.” The lab reports came back and confirmed that it was cancer. A mastectomy was ordered for the following Friday. All thought of a beautiful plastic surgery job went out the window. If I opted for reconstruction, that would be done later.  For now we zeroed in on getting the lump out, the breast off, and the cancer eliminated if possible.  I gave in to crying alone. I allowed myself to feel disappointment and fear the unknown. But I also spent even more time contemplating what I did have control of and how blessed my life was. I drew on the strength of my personal spiritual beliefs and found strength.

            The surgery itself wasn’t bad, though radical. The pain was minimal. The lab reports determined the cancer was borderline hormone related. The news also came back that no lymph nodes were involved! It was highly likely that the cancer had not spread. The outlook was much better now that I could beat this disease and survive! I took courage, and something within me whispered that I would be okay. I also know that with the Lord’s help and the love of my family, I could go through whatever I had to in order to live to raise my children and contribute to as well as enjoy a full life again. The Lord gave me the courage I needed to face and endure the next stage of recovery with a grateful and humble heart.

            Chemotherapy. The word brings a sick feeling to my stomach still, and is as emotional a word as cancer in my memory. But I knew I was fortunate and the Lord and the statistics were with me. I was willing to do all on my part necessary to assist in making a complete recovery. I was also now blessed with another great doctor. He wasn’t introduced to me as the most warm and caring but he had a reputation for being one of the best. I appreciated his honest, direct approach. Chemo is part of the cure, but in the process it makes you so sick you become more than ever aware that you are the patient—the sick one. A helpful aspect of this difficult time was becoming reacquainted with an old friend who had been diagnosed with breast cancer just a few weeks ahead of me and was now going through chemo at the same doctor’s office. She was so cheerful and helpful with her explanations and suggestions. We decided to plan our office visits together to support each other. She also suggested books for me to read on cancer. We occasionally went to lunch together and became “bosom” buddies.

            This was my schedule for the next six months. Monday I would go to the doctor’s office and be injected with about a pint of “poison”—a mix of five different chemicals that were to kill the cancer and cure me. By Monday afternoons I felt so sick that I wondered if the cure was going to kill me instead. Tuesday and Wednesday were bad days too, but by Thursday I could feel the stomach settling down a little. Fridays I could almost take food without gagging and by the weekend, I was only a bit woozy. Sunday I felt pretty good, and then Monday I’d go back for more chemo.

            My husband tried to keep the routine normal. He went to work his usual long, hard hours, but he spent time with me when he could in the evenings. He continued to assure me, sleep with me, and focus me on moving ahead. Friends continued to visit me, bring flowers, books, an outing planned or reviewed if I couldn’t attend. Food was brought in. The house was kept clean. The children pitched in with work and came up to my room for sharing and visits when I didn’t have energy to get off the bed.

            After six months of chemo, the doctor left it up to me as to whether to continue for another six months or not. I was tired of feeling sick, but I still wanted to do what was medically best. He gave me statistics that after five years, even after ten years of surviving cancer, the number of those who had received chemo for one year was no greater than those who had received it for only six months. I decided six months was enough. In the years since, chemo is administered in greater doses for shorter periods of time. I think I made the right decision. I had lost a lot of hair but not all of it. I lost a lot of weight but not all of it. I lost a lot of energy but not all of it. I lost a lot of strength but not all of it. But I hadn’t lost hope for a full recovery.

            During chemo I was also suffering with a secondary, more psychological problem of living as a “maimed” woman with only one breast. As the sickening feelings of the chemo began to dissipate, my awareness of my “freaky” body emerged to a greater extent. I looked and felt unbalanced—mentally as well as physically. I had not considered myself a particularly beautiful woman before surgery, but now I really considered myself ugly and completely physically unappealing. I needed affection desperately but, to some extent, felt unworthy. It was difficult to accept my husband’s efforts as genuine. Pity is what I felt at first but it was probably mine more than his. Gratitude for good health on the horizon finally overcame ego for me, but I continued to hurt for the loss of being at least a normal wife for my dear husband. He always said what I looked like didn't matter to him, that he loved me for who I am, but I felt disfigured and weird. I again gave into occasional, private crying and feeling sorry for myself. I suffered through the adjustments less openly than we had faced the other challenges to this point.

            At that time it was considered that if you were symptom free for five years, you were likely cured. I didn’t want to take any chances of missing any lumps that may have been missed or developed after my mastectomy and somehow thought it would be easier to detect if I didn’t have implants in the way. So I opted to wait for reconstruction for five years. I also had some question as to whether or not the silicone implants may have had something to do with my cancer in the first place. I think that is still an unknown, but I felt strongly enough about it to live for five years as a lopsided, unbalanced woman. It was a hard period for the “prime of my life.” Regular checkups continued and at the end of the five years I remained symptom free.  Again gratitude emerged and my prayers were again more of gratitude than regret or sorrow.

            Now began the reconstruction phase. It was so good to feel whole again. But implants are not like having a natural breast and further problems arose. The implants encapsulated and had to be replaced. The scarring caused shrinkage, dimpling and pulling. Discomfort was a daily companion, but I looked more normal than before and that kept me going. Better implants were developed and further surgeries improved both the look and feel. Still they were silicone and I worried about the effect that would have on my body. I had further surgeries, including biopsy, removal of a blood pool that had built up pressure under my implant after a blood vessel burst, and further reconstruction. Finally, after having implants on one side for 19 years and on the other for 9 years, I had my sixth breast surgery to remove the silicone implants and get saline ones. The quest for a more natural, healthy, comfortable breast goes on, but so does life. I’m grateful and still willing to do my part in getting better as well as older!

            So I lost a breast and lost a lot of prime time life at least in the way I had pictured me being in my prime. But I didn’t lose my life and I gained so much too. What I gained is what I really want to remember most. I gained an appreciation for life itself, for its purposes and opportunities. I gained an appreciation for normal good health and a normal body for enjoying the good things in life without having to have everything beautiful and perfect. I gained a renewed appreciation for the medical community with their vital yet imperfect cures, and for our own ability to know our own body and take much more responsibility for ourselves when we can. I gained appreciation for honesty supplemented with a good attitude. Most of all I learned that life is teamwork on every level. Having cancer and going through reconstruction was no exception. God is, of course, ultimately in charge and can draw near to us. We need his spirit with us. We need the best medical experts. We need family and friends to make the burden lighter and endurance brighter. Each individual needs to anticipate and cooperate in managing the input from all good sources including the patient’s own good sense and good attitude.

            For me having cancer was one of those experiences that I can really say I’m grateful to have had but never want to have again. I learned so much, appreciate so much, and it put things into perspective better for me. It gave me greater inner strength and understanding, gratitude and love. But it wasn’t without lingering costs as well. I’m not as healthy as I was. I don’t have the energy I did before. I don’t think as quickly and clearly as I did, and I certainly don’t have a smooth, shapely, natural body. Myself, family and friends are almost back to taking each other for granted, but, overall, I think we are better people. I know I’m a better person.   got to raise my beautiful children. I still have life with my wonderful husband, friends, and family.  I have health to enjoy and participate in life. I have a close relationship to the Lord. I have the world, and Heaven is with me. I am a blessed woman.

(Update on Helen: She has continued to be cancer free.)

 

Support Session #10: Survivors—Patti, Joanne, and Helen

• How has your cancer experience differed from Patti, Joanne, and Helen?
• What are the common threads?
• How do you think Joanne keeps going?
• Do their stories help you know that there is life after a cancer diagnosis?  In what ways?