Beyond October: Back to "Normal"

The grocery store aisles are returning to their natural hue. Pink hair extensions are falling out. The freshly painted pink traffic lanes around White Plains Hospital have dulled. 

Back to normal. But for those who have been touched by breast cancer, "normal" means a new kind of reality.

After my January '09 surgery, the adrenaline that had pushed me through the terror of diagnosis finally took a break. But it left me feeling weakened, like I had been in a boxing ring pummeled over and over, mentally and physically. 

When I spoke of my illness it took awhile before I could use the past tense -- to say, "I had breast cancer". I had come out of the dark tunnel with a great prognosis and was able to breathe a big sigh of relief.  I certainly counted my great blessings, but there were still decisions to be made, pain to get through, healing to begin.

Although I was thrilled that my oncologist said I didn't need chemo, I felt vulnerable.  A second opinion ultimately gave me peace with this decision. Should I push for a biological test (OncotypeDX) of my tumor's DNA even though my doctor was not recommending it?

I did. My oncologist put me on Tamoxifen (a five-year plan) which prevents estrogen from latching on and feeding any microscopic bits of tumor that might have gone unnoticed. But should I consider hormonal medication to temporarily freeze my ovaries and cut down on the production of estrogen altogether? 

I did. I alternated between feeling like Humpty Dumpty and the Bionic Woman during the 15 months in which my breast reconstruction process took place.  Sometimes there was physical pain, sometimes anguish, and I often found myself in a surreal state, where it felt like I was observing somebody else going through the procedures. 

Then there was the feeling of pure elation when I was done. The plastic surgeon said I didn't have to see him for six months.  It was springtime.

"See 'ya when the leaves are falling," I said to the office staff gleefully.  

Sometimes there were unexpected things that simply made me feel sad.  I knew that my skin would not have sensation -- I had mentally prepared myself as best I could for this.  But one day, my youngest lay her head against my chest and I could only feel the pressure of something against me. I couldn't feel her. The skin-to-skin contact that mothers relish was gone. 

A mother's breast cancer is a story that is retold to her child in different ways as the child reaches different developmental stages. As a child matures, it is almost as if you are talking to a different person. The initial conversation was, "I have something in my breast that is dangerous and needs to come out -- it's called cancer."  My six-year-old who remembered vividly the magic hospital bed, asked me a year later, "Why were you in the hospital?" 

My oldest daughter, at our first Susan G. Komen Race eight months after the surgery asked for the first time, "Will the cancer come back?" and a question that sent my heart aflutter, "Why aren't you wearing a survivor shirt?"

The truth was I wasn't ready. I still felt like a cancer patient. Could I be so presumptuous as to call myself a survivor?  Is the cancer gone? Even mastectomies and clean sentinel node biopsies are not foolproof. After all, I was on a potent drug for insurance against recurrence.

As time passed and I became comfortable with my status as survivor, I realized that it was possibly even more important to my daughter that I identify myself as one.  The next year I got a survivor hat and she grabbed my hand as we ran to get a survivor t-shirt, but we didn't have enough time to get one. This year I finally got the shirt.

We walk in the Race and are uplifted by hope and inspiration, as a long pink ribbon of thousands of people makes its way through Central Park. We read the names on people's backs -- lists of survivors they are celebrating. My daughter simply writes "Mommy." 

But we also are reminded that we have not won the battle. This past September I walked behind a woman with a picture on her back of a pretty forty-five-year-old --  her birthdate and date of death on the picture. "Oh my," I said to my daughter, "I knew her, years ago, an older sister of a friend."

During October Awareness Month we celebrate the advances made in detecting and curing breast cancer.  We tell our stories to support and educate. In my previous blogs, I talked about lessons that I had learned. But I also wanted to tell a story that I don't see being told very often. 

I wanted to share a very raw account of my journey because I wanted to take you along for a bit of the ride.  If you were able to feel deeply some of what happened to me, then only imagine the struggles in the harder cases: larger tumors, lymph node invasion, more toxic treatments, cases where the battle is lost. 

One of the great new developments is that advanced breast cancer (cancer that has spread to another organ) is now considered a "chronic illness", not curable, but treatable.  But we cannot rest on these laurels.  We cannot forget that those women with Stage 4 breast cancer will be living with breast cancer for the rest of their (I pray, very long) lives. 

So while we rejoice about the strides we have made, we cannot be complacent.  I have a pink silicone bracelet that says, "Imagine life without breast cancer". 

I don't want to imagine -- I want to live to see the day.