During my routine OB appointment, my doctor mentioned that my nipple “looked a little funny.” I had noticed that too. She was fairly certain it was eczema but wondered aloud if I might be willing to have a dermatologist check it. As I had a mole on my neck I was concerned about, I was scheduling a dermatology check up anyway so I agreed to schedule it sooner rather than later.
A week or so later, the dermatologist was concerned about the mole on my neck and biopsied it but was unconcerned by my nipple as she, too, thought it was eczema. She offered to biopsy it as a precaution, and I agreed. If I had realized in advance that it was a “punch” biopsy, where a cone of tissue is pulled out of your breast, I might not have been so eager. But by then she had already inserted a needle with a numbing agent into my nipple, so I was committed to the procedure.
It was not a good time in my life. My mother had recently died of cancer, my son, a young adult with disabilities, had a health crisis resulting in a pacemaker implant at age 30, and I was in the midst of a painful and acrimonious divorce. To say I felt fragile and vulnerable was a ridiculous understatement. The best I could do was to take myself and my punctured nipple home and put the whole experience out of mind.
When I returned to the dermatologist to have the stitches taken out, yes, there were stitches in my nipple, I realized I had never heard the biopsy results and asked the nurse who was preparing the room about them. She was puzzled that I had not received a phone call but assured me the doctor would have the results. My doctor came in, her face very still, not smiling, “We have to have a talk.” Damn, the mole must be cancerous. She took my hand, looked right into my eyes, “You have breast cancer.”
Have you ever had one of those moments where the air around you changes? It suddenly thickens like sludge, and you hear everything as if each sound has to fight its way through? That happened to me then. All room sound receded. I could only hear her explain in a soft and somewhat regretful sounding voice that I had a rare form of breast cancer called Paget’s Disease of the Breast and that I needed to go as soon as possible to a cancer treatment center familiar with rare cancers. This cancer should not be treated locally.
She said she would make an appointment for me immediately and she and the nurse left to do so. I was immobilized. In my head, all I could hear over and over in a relentless drumbeat was: breast cancer, breast cancer, breast cancer. I gazed around the room, all white with some silly skin care posters on the walls depicting various moles. Was it just a few moments ago that I was worried about moles? Bright sunlight streamed through the windows. How could this room be unchanged when for me nothing was the same? I took deep breaths, trying to find my center. The drumbeat stilled, and I became aware of music.
It was a muzak version of What a Wonderful World. I concentrated on the music and was rewarded with an image of children singing. The elementary school where I worked, The World of Wonder, had an amazing choir and because of the wonder in our name and our desire to have our school be the kind of world depicted in the lyrics, What a Wonderful World meant a great deal to us and the choir performed it with beautifully choreographed movements. I visualized the children in their navy skirts or pants and white shirts, faces filled with joy, pointing to their heads as they sang, “I think to myself,” raising their arms above their head and circling them downward, “what a wonderful world.” It was a visceral sign, reminding me of the beauty of the world and the children and people in it. A bit of peace crept into my heart.
My doctor was unable to make an appointment, as it was too late in the day on a Friday and the University Medical Center offices had closed at four. She stressed that I needed to attend to this immediately and that someone from her office would call me first thing on Monday with the quickest appointment time they could schedule. Monday seemed a very long time away. How would I cope until then? I gathered up my belongings and left, head spinning.
I had plans to meet a girlfriend for a drink after my appointment, anticipating good conversation and a leisurely meal. I called her and blurted out, “I have breast cancer!” She agreed to meet me at a bar, and we began a weird series of cell phone calls trying to find one another. I kept confusing where she wanted me to be and where she actually was… trauma brain. I finally pulled into a bar parking lot and called her again. She was in her car at a bar lot just across the street. For no sensible reason, she drove over, picked me up, and drove me to the bar over there. In retrospect, it would have made more sense for her to just park near me and go into that bar but that is not what happened.
Rebecca is a nurse but was unfamiliar with this particular type of cancer. It was now just after five o’clock so I could not call my OB to talk with her or my GP for that matter. Plus, I was still in shock. We sat in a booth, me facing the door, and just kind of stared at one another. I was nursing the beer I ordered when I looked up as the door to the outside swung open. Sunlight streamed in, so I could not clearly see the person who entered. When the door closed fully, and the person walked to a table, I realized who it was… my OB!
I rushed over to her and blurted out, saying it aloud for the second time, “I have breast cancer!” Her eyes widened, and jaw dropped. She asked when I had found out and I told her less than an hour ago. As I shared the diagnosis, her response was immediate, “I don’t know much about Paget’s Disease, but I do know it is very treatable.”
This was exactly what I needed to hear. I asked her if she usually came to this bar on Fridays, thinking how lucky that we had decided to come here where I could find her. Her response made running into her even more of a miracle, “I have never been here before; this is my first time.” I took that as a second sign, and a bit of hope followed the bit of peace.
Alone again on the drive home, my mind was filling with all kind of worst-case scenarios. How am I going to do this on my own? I have a son who needs me. I could not count on my soon-to-be-ex for anything. I have no family nearby. What will I do? Still in the car, I called another girlfriend, Donna, and she instantly got on the computer and started to search the Internet, researching Paget’s Disease of the Breast. She read me information about the disease and treatment options. This was immensely reassuring but most helpful was her offer to drive me the hour plus to the medical center where the specialist was located and go with me for my appointment. Relief flooded my body; a third sign. I am not alone. My girlfriends will be here for me. Now I had peace, hope, and faith in my heart that I did not have to do this on my own.
My husband and I became a couple when I was a junior in high school. Back then I traveled with a pack of thirteen girls; perhaps now it might be called a clique. But we all had boyfriends, and the boyfriends usually took priority. My ex made it clear very early in our relationship that what he told me or what we did together was between us and not to be shared with them. As I grew up in an alcoholic home, I was used to keeping secrets, so I fell in line with his demand easily, never thought it the least bit unreasonable. That began a lifelong pattern of turning to him first, prioritizing his needs over my own, and never sharing personal issues with girlfriends.
So, depending on my girlfriends was a new experience. I was blessed with wonderful friends, always felt their affection. But when I needed anything, my first go-to was my husband. He was my best friend, and we relied upon and trusted one another completely. He was my touchstone, my safe harbor. It was a terrible shock to discover his affair and betrayal, and the shock was compounded time and time again as his treatment of me became more and more cruel. I was committed to divorce but was nowhere near healed and was just beginning to restructure my life. At the time of diagnosis, he was still listed as my contact person in case of emergency. Well, this qualified as an emergency, but he was the last person I could rely on now.
The breast cancer was forcing me to confront the reality of my new life as a single woman. No more touchstone. No more trust. No more safe harbor. As I filled out form after form, I had to write over and over a name other than his for a contact person. And each time, I did it with a clutch in my stomach. Could I really count on these women? Each had a husband and family, and they would be her priority, not me. Each time it was a leap of faith.
I was committed to not keeping secrets, to living a transparent life. I was determined to do things differently than I had in my marriage, so I was just fine with my girlfriends knowing about my diagnosis. The only person I could not trust with this was my ex. At least not yet. I wanted to know more about what treatment was necessary and how I would manage it. I was crying myself to sleep at night, trying not to let fear and sadness overwhelm me.
It was a week or so later, at a college basketball game, in the ladies room, that the final shift occurred. I had been to the cancer treatment center and knew the possibilities. There would definitely be surgery, I had some choice in how dramatic that might be, everything from a double mastectomy to a partial mastectomy on the breast where the disease was evident. It would be my choice what, if any, reconstructive surgery I wanted. The need for radiation and chemotherapy would be dependent on the biopsies taken during surgery. I might be required to take a drug like Tamoxifen for five years post surgery.
So many questions, so few clear answers, it was overwhelming. Even though I was at a basketball game, my thoughts were consumed with my medical situation. How would I manage it all? What about my son? I had far more questions than answers. Then two of my girlfriends walked in. One was Donna, the person who had driven me to my first appointment. The other, Deb, I had not seen since my diagnosis. Deb walked up and put her arm around me. “I know about your cancer. We are going to take very good care of you.” My breath caught in my throat, my eyes filled, and all I could do was nod. I never told her, and perhaps if she reads this, she will now know, that her gesture of kindness was a tipping point. I knew that from that moment forward, I would be cared for. I would be all right. I would survive and thrive because I had my girlfriends standing shoulder to shoulder with me. I opened my heart to trust and felt whole again.
The women’s singing group Libana performs a song “A River of Birds.” The entire lyrics consist of one image; There’s a river of birds in migration, a nation of women with wings* sung over and over. The first few rounds are soft; then the voices swell until by the end the women are singing full out in beautiful harmonies. Just as the song began softly, then swelled, so has my recovery and healing progressed. I was lifted up by my women friends; their love and power saw me through all the treatments to the other side. Today I am strong and healthy. I am still nestled in the nation, flowing with the river, on wings.