When I was diagnosed with breast cancer in February of 1999, I found myself searching for stories of other women who had fought the battles I was facing. I soon discovered there are no strangers amongst women who are coping with breast cancer. We are held together by a common thread…one of strength and perserverence.
From the beginning of my struggle, I wanted to make a difference by holding hands with those who were dealing with similar circumstances. Thus, my website was born! I hope you find comfort in knowing someone else has paved a road you may be traveling on. Above all, I pray you gain strength from the realization that you never have to endure cancer alone.
My journey is one of many you can find online, but it has it’s unique moments. It is a story of multiple surgeries–including reconstruction, and the side effects which followed. It is an encounter which would be incomplete without the support and prayers of my family and friends.
Thank you for taking the time to experience my deepest thoughts. I wish you peace and healing throughout your cancer walk…and hope you will join our group very soon!
As I listened to the statistics flow from my doctor’s mouth in waves of slow motion, I knew he must have wanted to be anywhere but there…anywhere, but telling his patient who had just awakened from a hysterectomy that she would need a bilateral mastectomy as soon as possible.
I sensed the terror rise within my body as I heard the dreaded phrase, “You have breast cancer.” No mammogram had found my disease. No lump had been discovered. I was diagnosed with a very rare form of ductal carcinoma in situ, (DCIS), which had spread multifocally throughout my ducts. Even though it was microscopic, this horrible monster had ravaged most of my ductal system, leaving me with only one choice for survival: removal of both breasts.
My first reaction was one of astonishment. This couldn’t be happening to me! Wasn’t it bad enough that I was lying there with staples across my stomach and the knowledge that I could never give birth? When I was put to sleep a few hours earlier, I thought that was as bad as it could get. How could I magically awaken with breast cancer? Although I had endured fibrocystic breasts for many years, all my mammograms had been clear. My doctor had decided to perform a breast biopsy at the same time of my hysterectomy–just to make sure everything was okay. But neither he nor I was prepared for the horrifying results.
My thoughts immediately drifted to my family…my ten year old son…my husband and soulmate. I wondered if I could survive another surgery so soon after the last one. I was terrified I might never see my son grow up into a young man…drive his first car…or go out on his first date. I questioned myself too, thinking I might have caused my cancer…perhaps by eating too much or exercising too little…or taking fertility pills over fifteen years ago. My mind was reeling, and all the while, the doctor continued to explain the advantages of finding my cancer early enough to avoid chemotherapy. Even still, I didn’t feel very lucky. It took a long while to see any good hiding beneath my darkness of reality.
Suddenly, my husband and I found ourselves alone in that dreary hospital room. We clung to each other in desperation, crying for what seemed like hours. I felt his pulse beat through mine as our tears faded into heavy sobs. At that very moment, I cried for him. I didn’t believe he deserved a wife like me. He didn’t deserve the horror of cancer. I whispered those fears to him as he wrapped his arms around me even tighter. He looked directly in my eyes and said the sweetest words I have ever heard…”I didn’t fall in love with your breasts, Debi, or any of your other body parts. I fell in love with what’s inside your heart.”
From then on, I held a glimmer of hope. I didn’t know how in the world I was going to make it, but I knew with God’s help and my husband’s love, I would never have to make it alone.
The Big “C”
Cancer wasn’t willing to wait for me to take a deep breath. I had to bring it along for the ride. It accompanied me while I was recovering from my hysterectomy, never apologizing for it’s terror. No matter how hard I tried to assure myself of my doctor’s encouraging words, the remnants of fright were still there, hiding deep inside, jolting me from sleep.
I had always thought if they found breast cancer, it would be in the form of a tiny lump which could be removed before it had the chance to do any damage. I never dreamed there was a cancer like DCIS which could hide in the ducts and manifest itself in several locations. Besides, I thought I had done everything possible to find cancer before it would progress to that stage. I couldn’t believe years and years of regular mammograms plus self examinations hadn’t found this plague.
In addition, I became aware that losing a breast or two didn’t seem like a big deal to some people. While preparing for my mastectomies, I had a few women tell me it wouldn’t matter if they lost their breasts because they’d never had any to begin with. I found such advice startling. Others couldn’t understand why I was having such a hard time accepting my fate. They felt I should be able to “get over it” and move on. After all, I was trading my breasts for my life…and to them, there was no decision to make.
Of course, I knew I could live without my breasts. I was even willing to lose them in order to regain my life. But, for me, the loss was like a death in our family. I longed to grieve without being judged for my feelings. Thank goodness my closest friends and loved ones listened to my concerns. With their tender touch, I was able to accept the inevitable and plan my surgeries.
Since I had undergone an abdominal hysterectomy, I needed to wait eight agonizing weeks to recover before I could go through another procedure. During that time, I was basically quarantined due to the flu that was raging throughout our town. Every day was a challenge for me to stay positive and hopeful.
The nights were devastating since I would wake up in sweats from surgically-induced menopause. To top it off, I developed vertigo which stayed with me for almost a year. I would awaken abruptly with my head spinning out of control. When I tried to get out of bed, I would fall on my hands and knees…disoriented and terrified.
I knew I had to make a plan that would help me rise out of the depression I was plunging into. I decided to join a support group at my oncologist’s office. I truly believe my attitude changed in a remarkable way after meeting those special women. Our weekly encounters pulled me through one of the toughest times of my life. Their experiences taught me the value of validation and sparked my interest in wanting to reach out to others.
Up until that point, I hadn’t talked to a single person who had ever dealt with breast cancer. As a young woman who was still in her child-bearing years, I felt like an isolated victim who was being stripped of her entire woman-hood. When I met my support group friends, I soon discovered I was not alone with my fears or my anger. We hashed it out…sometimes to the point of tears…until the pain was softened by discovery. I learned a valuable lesson there which will inspire me forever…
So much of courage is misunderstood. It is not really how you do it, but simply that you do it at all.
It wasn’t long before my doctors were saying I was the perfect candidate for immediate breast reconstruction since I wouldn’t need chemotherapy. I know in retrospect that there is nothing “immediate” about reconstruction, but at the time, I thought it was the best idea I had ever heard. Basically, the immediate part meant I could have plastic surgery performed right after my mastectomies and wake up with the beginning of new breasts. I liked that idea.
So, for weeks leading up to my surgery, I spent several hours in the plastic surgeon’s office gazing at pictures of other women’s chests. I had about ten different procedures to choose from. With names like TRAM and DORSI, I thought I was being abducted by foreign aliens! It was a difficult decision, but I finally chose to go with bilateral expanders which would prepare me for saline implants. At least I understood what implants were.
The world of plastic surgery was a fascinating discovery. It was also very different from anything I’ve ever experienced. The idea of waking up from surgery with something besides a flat chest was appealing. Therefore, I was incredibly thankful for my plastic surgeon and the progress made in the world of breast reconstruction.
For me, it was never a question of vanity. It was all about symmetry. If I had lost an arm or a leg, I would have wanted it replaced too. My breasts were a part of me, and I wanted them back.
Reconstruction gave me hope. The implant procedure seemed “do-able” because it was only a two hour surgery. I didn’t want any more hours under the knife than necessary. That’s where the expanders came in. After the mastectomies, the plastic surgeon would begin his work before the skin was reattached. He would insert two balloon-type implants under the muscles in my chest to hold them in place. Right away, I would wake up with two little mounds. Then, several weeks later, I would return to the doctor’s office so he could fill them with saline through a little port.
Once a month, he would continue to fill the expanders with saline until I liked my new breast size. I would then return to the hospital and have the expanders removed through the same scars as my mastectomies. The last step was being fitted with permanent saline implants. It sounded easy enough!
There’s something about a hospital corridor that leaves me hollow. Perhaps it’s because I’ve spent a great deal of my life there…waiting to be abruptly escorted into operating rooms. If I wanted to feel sudden fear rise in my heart, all I would need to do is remember the touch of a sterile, cold gurney or the sight of those dimly lit hospital halls.
On the day of my mastectomies, those halls felt as if they were crashing in on me. I thought I was caught in the middle of a horrific movie scene. I kept waiting for someone to stop the film, but they never did. I kept wondering if the doctor might pop in the room and call off the whole procedure. He never did.
Only a few hours before, my husband and I had spent a sleepless night trying to say goodbye to a body we had known for many years. I can’t explain the emotions wrapped up in those moments and I’m not sure I would want to. What I do know is when you share something as special as a loving bond between two people, cancer hurts the caregiver as much as it hurts the patient. As I watched my husband grieve for me, my loss took on new meaning. I knew we were in this together…all the way.
I can still see his worried face as the nurse began to wheel me down that narrow hallway. Hollow tears were flowing down his cheeks as he slowly waved goodbye. I glanced over my shoulder several times to watch him fade into the distance. I thought if I could only hold onto him and never let go, surely none of this would ever happen.
Suddenly, a tiny voice cried out at the end of the corridor. “Wait!,” the voice murmured. “Wait just a minute!”
The nurse turned the wheel chair around as I saw one of my best friends standing there with my husband. She ran up to my chair and threw her arms around me. We cried together, but never spoke a word. As I was escorted into the operating room, I watched time slip away through the expressions of my loved ones.
Each of us knew my “old body” needed to leave before I could gain a new one. While being lifted onto that frigid gurney, I began to make peace with the fact that it was time to let go.
A Butterfly’s Journey
For over a year, I have postponed the ending to my story because I didn’t know how to put it into words. You see, five months after enduring a painful reconstruction process, I lost my expanders due to a terrible infection. What came afterwards was the realization I would never be the same person again…no matter what my chest looked like. Cancer changed me, but not in the way you might think.
After I lost my breasts for a second time, I decided to spend my energy helping others cope with their loss. In the paragraphs above, I was feeling “the grief”…and there are still days when I wake up with tears on my pillow. However, several seasons have passed…and my journey has taken me to a higher understanding. I have learned to laugh again…to love again…and to trust my body again. Cancer has given me an awareness I would have never known otherwise.
I believe “to be a survivor…is to know the journey of a butterfly.” In the beginning, I lived in a cocoon…unable to take a breath due to the fear which gripped me. But after the fear subsided, I emerged to be stronger than ever before. God has given me a voice..and the message I want to share is simple: You never have to be alone. There are wonderful resources available to you…no matter where you are in your journey. If you have lost hope along the way, let Friends In Touch help you carry your load! We are here for you, and even though your path will never be easy, it can be softened by the experiences and prayers of others.
Your friend in touch.