“I’m afraid you have breast cancer.”
Are you talking to me?
My doctor was speaking, but I couldn’t comprehend his words. As I listened to the statistics flow from his mouth in slow motion, I knew he wanted to be anywhere but there…anywhere but telling his patient who had just awakened from major surgery that she needed a bigger one in the near future.
The terror rose within my body. No mammogram had found my disease. No lump had been discovered. I was diagnosed with a rare form of cancer which had spread to both breasts. Even though it was microscopic, it left me with only one chance of survival…a bilateral mastectomy.
I was just 40 years old. Although it’s never easy, it’s often more difficult for young women to absorb the shock of having cancer while raising children. It was even harder to imagine losing both breasts while I still had half my life to live.
My thoughts immediately drifted to my family, my ten year old son, my husband and soulmate. I was terrified I might never see my son grow into a young man, drive his first car, or go on a first date. I tortured myself thinking I might have caused this disease, perhaps by eating too much or exercising too little. You name it, I worried about it.
Suddenly, my husband and I found ourselves alone in a dreary hospital room. We clung to each other in desperation, crying for what seemed like hours. 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 you.”
In that moment, I had 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”
Unfortunately, over the next few months, hope came and went like a violent roller coaster ride. Cancer wasn’t willing for me to take a deep breath. It was my constant companion, accompanying me every waking moment, and never apologizing for its terror. No matter how hard I tried to reassure myself, the remnants of fear were still there, hiding deep inside, jolting me from sleep.
If they found breast cancer, I thought it would be in the form of a lump which could be removed before it had the chance to do any damage. I never dreamed there was something like DCIS which could hide in the ducts and manifest itself in several locations. Besides, I had done everything possible to find cancer before it would progress to that stage. I couldn’t believe years of regular mammograms and self examinations hadn’t found this plague.
Of course, I was willing to lose my breasts in order to save my life. But, for me, the loss was devastating. I longed to grieve without being judged for my feelings. Thank goodness my closest friends and loved ones listened and loved me through those days. With their tender touch, I was able to accept the inevitable and make a plan.
Since I had recently undergone surgery, I had to wait eight agonizing weeks before I could schedule my mastectomies. Every day was a challenge to stay positive and hopeful.
After much consideration, I decided to attend a support group at my oncologist’s office. My attitude changed remarkably after the first session. Our weekly encounters pulled me through some of the darkest times of my life. The experiences of other women taught me the value of validation and sparked my interest in wanting to reach out to others.
Until that point, I hadn’t spoken to a single person who had dealt with breast cancer. When I met the support group, I discovered I was not alone in my fear or anger. We hashed it out, sometimes to the point of tears, until the pain was softened by discovery. I learned a valuable lesson from those friends that will inspire me forever…
So much of courage is misunderstood. It’s not really how you do it, but simply that you do it at all.
It wasn’t long before the doctors were saying I was the perfect candidate for immediate breast reconstruction. I know in retrospect there is nothing “immediate” about reconstruction. But, at the time, I thought it was the best idea ever. Basically, the immediate part meant I could have plastic surgery performed right after my mastectomies and wake up with the beginning of something new. I liked that idea.
So, for weeks leading up to the 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.
On the day of my mastectomies, the hospital walls felt as if they were crashing in on me.
I can still see my husband’s expression as the nurse wheeled me down the narrow hallway. Tears flowed down our cheeks as we slowly waved goodbye. I glanced over my shoulder several times to watch him fade into the distance. I thought if I could only hold him and never let go, none of this would happen. As I was escorted into the operating room, I felt time slowly slipping away.
Both 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 it was time to let go.
A Butterfly’s Journey
To make a long story short, my cancer surgery was successful, but my reconstruction was not. Five months after enduring an extremely painful process, I lost the expanders due to a terrible infection. What happened afterwards was the realization I would never be the same person, no matter what my chest looked like. Cancer changed me, but not in the way you might think.
Losing my breasts for a second time was incomprehensible. But, as far as the doctors knew, my cancer was gone, so I decided it was time to spend energy helping others cope with their losses instead of my own. In the paragraphs above, I was feeling “the grief” and had many days when I woke up with tears on my pillow. Today, 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.
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 that gripped me. But after the fear subsided, I emerged to be stronger than before.
I believe God has given me a voice, and the message I want to share is simple: There is no right or wrong way to do cancer. What the world tells you is not always what’s best for you. So, be in your space and don’t feel like you need to be anything other than you. Being honest about your grief is more important than trying to hide behind a facade.
There are wonderful resources available, no matter where you are in your journey. Talk to someone. Ask your doctor or friends for help. If you have lost hope along the way, it can be encouraging to hear the experiences of others. Find solace in knowing there are no strangers amongst women (and men) who are coping with cancer. We are held together by a common bond, one of strength and perseverance.
I recently celebrated my 20th year of survival. It’s been a time for reflection and gratitude. I’m very aware not everyone fighting cancer has this outcome. I’ve lost many dear friends and family along the way, including my father to lung cancer. But I’ve also been blessed to meet thousands of courageous women, men, and young people on this journey. These amazing warriors have walked with me and worked beside me as we have organized several cancer-fighting events.
It’s important to never give up searching for a cure. Thanks to everyone who helped me carve my path, especially friends, family and students.
I love you. I’m living proof you made a difference. ~Debi