A Story You Won’t Soon Forget

For the past ten years, I wrote my book in isolation. Long hours in front of my computer at my home, or a coffee shop, library and on Amtrak traveling between our home in North Carolina to Washington DC or New York City, and in other spaces I can’t remember. Wherever the location, I rarely chatted with others.

Now I am sharing my thoughts about my book and publishing issues with other authors. A whole new network of fellow writers has opened up to me. I no longer struggle alone but can discuss my experiences with those that have walked along the same path.

I spotlighted Nightingale Tales: Stories from My Life as a Nurse, by Lynn Dow in November. The book described Lynn’s nursing education and early hospital experience that was very much like my own. I spoke with Lynn three weeks ago and more recently with another author, Antoinette Truglio Martin. Both women freely shared their experience in their journey to publication, which publicist they choose, and how they promoted their books. I’m looking forward to contacting more authors as I travel this road.

Getting back to Antoinette Truglio Martin. She wrote Hug Everyone You Know: A Year of Community, Courage, and Cancer. Yes, it’s about cancer but it is not a depressing book. In fact, the Antoinette’s story is a thoroughly enjoyable read about her life as a wife, mother, speech therapist and special education teacher. Cancer is a tangential occurrence in her busy, happy life. She writes:

“. . . The less attention and verbiage I gave this cancer, the less real it was in my day. This cancer is nothing more than a detour—not a chronic condition or terminal illness. Audible words, long dialogues, and ownership would provide it with an embodiment. I tried to keep that to a minimum. The treatment I was willingly putting myself through was aimed to kill any trace of cancer that might have been left behind from surgery (lumpectomy). I believed it was completely gone, and the chemo and radiation therapies served as insurance against a recurrence. This cancer did not deserve an audience and would never be referred to with the personal pronoun ‘my.’”

Antoinette balances her story between her encounters with oncologists, chemo and radiation treatments, and stories of her extended Italian family, living in Long Island near the Great South Bay, and being supported by a group of caring family and friends. Coincidentally, four of her friends were also undergoing treatment for breast cancer.

I happily followed as Antoinette, a self described “overly squeamish, wimpy crybaby” who passed out during a blood draw, as she took charge of her treatments and confronted rude, uncaring and unprofessional medical staff.

One does not have to be faced with a cancer diagnosis to enjoy this book. Hug Everyone You Know opens a window on what it is like to navigate the health care system with a frightening illness. Antoinette educates us with a tender, engaging story that we will not soon forget.

 

 

 

 

Twenty Years After the Cancer Diagnosis.

Next Sunday, November 5th, will be the 20th anniversary of my mastectomy. Afterward, my surgeon draped her arm over my shoulders and said I was “cured” as she escorted me out of her office on Connecticut Avenue in Washington, D.C.

Each November 5th , I would make a big deal of the anniversary date of my surgery, or my second birthday, as I called it. I went someplace special. Like a superstitious baseball player, I ran through the same ritual when I came to bat. I wrote down what I was grateful for in my journal, contacted friends and family, telling them how much I appreciated their concern and attention when I was in the throes of cancer crazy and then scheduled something I would do all alone.

The first year, I took Amtrak from Union Station in Washington, D.C. to New York City and ambled up Fifth Avenue on a glorious fall day. In Central Park, I ate a hot dog with mustard and sauerkraut and listened to a skinny old guy dressed in a bright blue suit with a vest and spats, who sat on a bench across from me, playing a ukulele and singing songs my mother and I had listened to on the small radio on top of the refrigerator when I was a kid and she cooked supper. Wait till the Sun Shines, Nelly. Over There. Don’t Sit Under the Apple Tree with Anyone Else but Me. Filled with nostalgia of my childhood and gratitude for my life, I licked the mustard off my fingers and walked back down Fifth Avenue to Penn Station and back home. I repeated some version of this for the next nine years.

However, when my ten-year anniversary rolled around, I decided I would no longer engage in this superstitious ritual. I no longer needed to hang on to the label of cancer survivor, or replay each detail of the cancer journey as a holy event.

On another glorious fall day, I traveled from my new home in Chapel Hill, North Carolina back to DC for what I called the last celebration. First, I had lunch with Cathy, a nurse who was diagnosed with breast cancer around the same time as I. While I had stage 0—no infiltration, she has stage III. She sat across from me in McCormick & Schmick’s front dinning room, a seafood taco salad front of her. She had lost 30 pounds, intentionally, and looked professional with her soft beige jacket, long green velveteen skirt and government ID hanging around her neck. During radiation treatments she had worn a strawberry blond wig. Rather wild for a woman in a religious order.

“Well, I believe that if I didn’t get breast cancer, I would be still be living in the religious community. It was having cancer that lead me to evaluate where I was and why. It took two years from the first questioning to finally leaving,” Cathy said as she snapped off a piece of the taco shell, and scooped up some beans and fish into her mouth. I wasn’t surprised she left—she always struck me as an independent person—more of a free spirit than a follower who vowed obedience to an organized religion.

“Remember when we talked about whether or not cancer had changed us? You said you were still the same, right?”

“Yeah,” I said, “ I wished I would have become a better person, more caring and polite. But I am the same big mouth from Jersey City. Clumsy and rude.”

Cathy laughed even though she had heard this before.

“Are you happy?” I didn’t know why I asked her—she looked content.

Her eyes widened. “I thought I was going to die.”

Maybe a cancer diagnosis does change you. Not overtly. Some foreign emotion tugs at your gut: an awareness that only rises when it’s important. I didn’t do anything great. I just lived more honestly. Taking responsibility for my own thoughts and actions, I needed less approval from others.

After lunch Cathy went back to work and I headed to the National Cathedral on Wisconsin Avenue.

While my “lesions” were investigated and various treatments were discussed, I frequently made a detour on my way home after work to the Chapel of the Good Shepherd. Small, with seating for seven worshipers, the chapel was tucked away off the courtyard on the crypt level of the cathedral. There I would sit with my fears, always alone. The cool concrete walls, dim lightening, and silence calmed me. I focused on the stature of Christ, a lamb cradled in his arms, his hand burnished smooth by the touch of visitors seeking miracles. I always left infused with strength to face whatever was coming.

This time, when I entered the chapel, I wasn’t alone. To my left, a young woman with long dark hair silently sat with her legs drawn up and her bare feet on the bench, her shoes placed neatly on the floor in front of her. Her dress didn’t classify her as homeless. Her brow was knotted in worry and her cheeks were wet with tears. She didn’t acknowledge me but kept her eyes fixed on the statue of the Good Shepherd. My own mission seemed insignificant in the presence of her agony.

After a few minutes I left. But not before patting the Good Shepherd’s hand. “Thanks for being there when I needed you,” I whispered.

Now approaching my 20th anniversary I know that a “cancer” diagnosis has forced me to appreciate that there are no guarantees in life. I need to take chances. I don’t see any choice but to dive into my dreams.

As I look back on my life that has been rich and challenging, I remember that young woman and wonder what was so awful in her life at that moment. I hope, like me, she went back to the tiny Chapel of the Good Shepherd, her problems resolved. And before she left, she touched the back of Christ’s hand thanking him for being there when she needed comfort and then got on with her life.

SECOND GUESSING CANCER

stock-photo-doctor-with-mammography-292061516I’ve written in a previous post about my experience of being diagnosed with breast cancer 18 years ago. I’ve always wondered if I should have forgone a mastectomy and adopted a watch and wait stance. However, when my doctors never gave me that option and my family was aghast at my doing anything less than full warfare on the invading cells in my body, I gave in to surgery.

The type of cancer I had, ductal carcinoma in situ or DCIS, is still under investigation. Is it or isn’t it cancer? If it doesn’t leak out of the lining of the milk glands and metastasize, is it truly deadly? The treatments given to women can sometimes cause more problems than living with cells that, in some instances, resolve. So I was happy to see more attention given to finding answers in a new study about DCIS in the JAMA Oncology (online) August 20, 2015.

I had become an advocate of taking “cancer” out of DCIS label. That way women wouldn’t panic and rush to having mastectomies and in some cases prophylactic double mastectomies. Hopefully “watch and wait” would be an added choice rather than have women succumb to unnecessary treatment.

After I read the original article in JAMA—I am not going to tell you I understood all the statistics—I realized that DCIS is what most cancers are: complicated. Some types of DCIS can predict that a lethal breast cancer can occur in the future. I am more sympathetic of the tightrope that physicians and surgeons walk in counseling their patients.

The accompanying editorial by Laura Esserman in the same JAMA issue gives the following suggestions:

  1. Much of DCIS should be considered a “risk factor” for invasive breast cancer and an opportunity for targeted prevention.

  2. Radiation therapy should not be routinely offered after lumpectomy for DCIS lesions that are not high risk because it does not affect mortality.

  3. Low-and intermediate-grade DCIS does not affect mortality.

  4. We should continue to better understand the biological characteristics of the highest-risk DCIS (large, high grade, hormone receptor negative, HER2 positive, especially in very young and African American women) and test targeted approaches to reduce death from breast cancer.

Hopefully these suggestions will become a common practice in health care settings so women like me won’t be regretting a choice they made based on incomplete knowledge and overdiagnosis by the medical professionals.

CANDICE BERGEN, MURPHY BROWN AND ME

On the front of The Arts section of the New York Times this past week was a picture of Candice Bergen. Candice BergenOlder (aren’t we all?) but still lovely even carrying thirty extra pounds. Making no excuses for the weight gain, she says, “I live to eat.” (I can relate to that.) She had written a memoir, her second, which is titled: A Fine Romance.

Candice Bergen played a television reporter in the situation comedy, Murphy Brown, from 1988 to 1998. I loved this show and watched it faithfully. The show resonated with me. Murphy Brown, an independent, smart and tough woman, was in control of her life and took responsibly for her actions. I wanted to live next door to her.

But it was when Murphy Brown was diagnosed with breast cancer the same time as me in October 1997 that I felt a simpatico relationship. As you know, October is Breast Cancer Awareness Month—did the Murphy Brown producers do this intentionally? th-1I wasn’t the only one fixated on Murphy’s cancer—“The show’s handling of the subject was credited with a thirty-percent increase in the number of women getting mammograms.”

One night, I remember sitting in the burgundy recliner with Mittens, our cat, on my lap, in front of the TV watching Murphy deal with her diagnosis. Murphy was shocked and secretive at first, as was I. In that show, she was being carted around in a wheelchair (I think she was being discharged from the hospital) And I don’t know why at that moment she decided not to keep the diagnosis to herself. What I do remember so vividly was that she was stopping people who passed her in the hallway of the hospital, telling them that she had breast cancer. You can imagine the blank look on some faces and on some, fright as if saying, “Let me get away from this lady ASAP.” I nearly fell out of the recliner laughing.

The next day at work I began to share my bad news. I told one of the administrative assistants as she walked out of her office that I was just diagnosed with breast cancer without any preamble. Her face showed a mixture of fright and surprise as I moved on not waiting for her to respond. Later that evening I chuckled at myself.

Thanks Murphy Brown for giving me a reason to laugh many times but especially at a dark moment in my life.

Thank you, Candice Bergen, for ignoring your thirty-pound weight gain in spite of Hollywood’s “beauty standards” and good luck with your new memoir.

WHITE AMARYLLIS

In my last post I wrote about the trauma surrounding my cancer diagnosis. In spite of mostly negative consequences of living as a “cancer survivor” there were a few positive occurrences. For example, meeting special people I would have never encountered under normal circumstances.

A month after my mastectomy I joined a cancer support group hosted by a woman with lymphoma in her large Victorian home with a wrap around porch in Chevy Chase, Maryland, not far from where I had worked at the National Institutes of Health. Three of the seven regular members had had breast cancer. The other four had a variety of other cancers.

At the start of each meeting we held hands in a circle while Gregorian chants played in the background, the music soaring up to the ten-foot ceilings and swirling about the large elegant living room. The leader asked we pray for those present and not present that were still struggling with treatment, suffering with pain or hoping for remission. Then in silence we made our own supplication. Invariably, as I stepped on the polished hardwood floors to take a seat, I felt a peace settle over me.

Besides the seven group members, other women sporadically attended our meetings. Once, a young woman sat along side of me on the flowered sofa. In front of us, on the glass and chrome coffee table, a snow-white amaryllis sprouting from a bulb set in a deep blue planter. Young, thin, with long dark hair, the woman spoke about the aggressive breast cancer that would soon end her life. She had a husband, pre-school children and a hunger to live.

She mesmerized me with her research to find a cure. Depleting resources in the area, she found a practitioner in another state and made plans to drive to see him later that week. As she spoke of her hope to halt the cancer’s progression, she stopped mid-sentence. Noticing my rapt attention, or my agonized expression as I listened to her frantic search for a cure, she reached over and clutched my hand. “Don’t worry, your cancer is not as bad as mine.” I squeezed her hand back, unable to speak for I was so touched by her gesture.

Afterwards, I walked down the porch steps and into the winter chill, feeling a bit of survivor’s guilt that my cancer was not fulminating. Eventually, I dropped out of the group.

Each time I see a white amaryllis, I recall the women in that group and their strength, especially the young mother. Her generous comment and concern for me even as she frantically detailed her quest for a cure still overwhelms me.AmaryllisWhiteNymph

I never did find out what happened to her. I want to believe on the out-of-state trip she found a curative regime and is now enjoying her grandchildren, putting all the trauma of her cancer behind her.