N.E.D. (No Evidence of Disease)

advances-in-breast-cancer-01-afAbout a month ago, I got an email from someone named Drew. I had no idea who Drew was. Among other things, he wrote:

Jena: As someone who is active in the women’s blog community, I thought you’d be interested in hearing about a rock band with a purpose, N.E.D. The group is comprised of six musically talented gynecologic cancer surgeons hailing from all four corners of the U.S. (N.E.D. is an acronym for “No Evidence of Disease” – a phrase that every gynecologic oncologist hopes to tell a patient after undergoing cancer treatment.) The band’s mission is to enhance knowledge about the disease, bring hope through rhythm for women undergoing treatment, and raise awareness & money for the fight against women’s reproductive cancers.

Also worth noting – N.E.D.’s drummer, Dr. Nimesh Nagarsheth, will be releasing a book, Music and Cancer: A Prescription for Healing, in mid-September, 2009. The book opens with a moving foreword by Fran Drescher, President and Visionary of the Cancer Schmancer Movement.

Drew asked if I would consider adding a widget to my blog that provides data and statistics about gynecologic cancers, album/band updates, and event info via RSS feeds to those who install it.

I wrote him back, thanking him for contacting me, curious as to how he had found me, and letting him know I would consider it despite the fact that I had no idea how to install a widget on my blog (and, as it turns out, still don’t – but that’s not stopping me). August rolled along and I kept his message in my inbox, where I glanced at it from time to time, not sure how or whether to proceed. I typically don’t “endorse” or promote anything here. But then again, there aren’t really any rules and if there are, they’re all made up.

Then last Saturday morning, I saw our friend, Gail, at the park.

***

Gail and her husband were among the first people we met when we moved to Burlington in the spring of 2000. They lived in the upstairs apartment of the house across the street from us. Their first daughter was born not long after we moved in, and ours, Aviva, came not long after that. Over the five years or so that we were neighbors, we shared birthday parties and winter potlucks and beers on porches. We came to know and love the three of them. In 2005, we moved to a different part of town, as did they. But we stayed in touch and remained friends. That same year, they had a second daughter. A year later, to the day, Pearl came.

In March, 2008, when we were on vacation in Vieques, I got an email from Gail. She said she knew this was sudden and assured us that she was ok. She was writing to let us know that she was going in for a radical double mastectomy as a result of testing positive for the BRCA gene. She had gone ahead with the genetic testing because of her family’s history of breast and ovarian cancer, including her mother and sisters. She wrote that she and her husband were actually relieved that they had this chance to act swiftly, and that we shouldn’t worry. She had two beautiful daughters whom she had breastfed. She considered herself lucky.

As far as Gail could see, she was going in to have this surgery, then reconstructive surgery, followed by a low-key summer with her family. They had made a decision that felt proactive and responsible. Then they would get on with their lives.

But when we came home from our trip, we learned that during the surgery, the doctors actually found cancer. Gail already had breast cancer. Who knows how much it would have advanced had she not been tested for the BRCA gene and elected to have surgery to begin with.

So instead of spending the summer adjusting to life with breast implants, she spent the following months undergoing chemo and radiation. She lost her hair. She lost weight on her already lean, almost boyish frame. She wore gorgeous scarves and brought her girls to school, all while still working full-time. She was stoic, brave.

Back in 2006, when our second daughters were in the YMCA infant/toddler center together, Gail and I sat next to each other almost every single day and nursed our girls during our lunch hours. Some days, we dozed off ourselves as they babies sucked and dropped off to sleep. Usually, we talked about balance and work and our older girls and our husbands and life in general. The room would be dim, toddlers shifting around on their little mats. More than once, I sat there crying; I was so sad to leave Pearl each day. (It would be a matter of months before I gave notice and phased out of my job at UVM.) Those nursing sessions together were so sweet, so intimate, and so inextricable from our bodies, our women’s bodies, our full, life-giving breasts. And Gail had beautiful breasts. I know that might seem weird to write, but I remember them.

Over the past year and a half, she and her family have been through the ringer. After she completed treatment, Gail did have reconstructive surgery. Her hair grew back in, curlier than before. She had some other symptoms, unrelated to the cancer but mysterious – scary heart palpitations that her doctor thought might be panic or anxiety attacks. I remember her telling me one day in the hallway at the girls’ preschool that she didn’t feel like the doctors were really listening or taking her seriously. I remember feeling indignant, frustrated, angry, helpless.

I considered interviewing Gail for this post, so that I could be sure to get the details right. I am so not a detail person; I can’t remember what she underwent when… it seems like she bumped into one complication after another and she gave me permission to write this post based on my memories of her experience. Thankfully, the cancer was gone, but then she had some kind of infection or fluid build-up near her armpit, something having to do with the implants. Another surgery. I couldn’t believe it. Not to mention that these were all outpatient surgeries. She described the hospital, how they had to free up the bed as soon as possible. This all seemed incredibly wrong to me. Wrong, wrong, wrong. It was a firsthand glimpse into issues of patient care, advocacy, and so many things that are so fucked up, so broken, within our health care system.

After that last surgery, I decided to stop by Gail’s house. I wanted to respect her privacy but also felt like being spontaneous. So I grabbed my copy of Momma Zen from the bookshelf, inscribed it to her, picked up some currant scones and coffees at Mirabelle’s downtown, and called her on my way over. “Is it ok if I stop by?” I asked. “Sure,” she said. I arrived a few minutes later and we sat together in her living room for maybe an hour, just talking about it all.

She told me that the oncology department provides free counseling to cancer patients and survivors, and that talking to someone who had been through this herself had been incredibly helpful. She said her husband was reticent about going to therapy himself; he felt like it would keep the cancer at the center of their lives when all he wanted to do was find a way to move forward. But for her, she said, it was the opposite: having the space to talk about it was in fact helping her to move forward. She talked about how crazy it seemed that it took going through this to really realize that she can’t do everything she does – raise two kids, work full-time – without making some changes in her life. She spoke of seeing the limits of stoicism. The absolute necessity of speaking up about her needs rather than putting everyone else first. I left her house that morning feeling so grateful for our friendship.

And then came this past weekend. It was the first day of the Greater Burlington Girls’ Soccer League, and Callahan Park was a sea of bright colored t-shirts worn by girls of all ages in cleats and shinguards. Greg is coaching Aviva’s team, the Purple Puppies, and we were playing on the playground after a valiant, scrappy, noisy blowout of a game. Gail’s oldest was playing, too, it turned out, and Gail and her younger daughter had spotted us at the monkey bars and come over to play and say hi.

She sat down next to me in the grass. “I had another surgery,” she said. “They had to remove the implants.”

I looked at her with disbelief. “What???” I said, scooching my body over closer to hers and covering her hand with my hand. “Oh, Gail.” I could see it in her eyes, feel it with my whole being sitting there next to her, sheer disbelief. The implants had broken through her skin, something her surgeon had seen happen only twice before. That would be that. She will never have breasts again. She sat there, a dark blue zip-up sweatshirt hanging flat against her chest, her arms crossed. I felt this loss as if it were my own. Tears welled up in my eyes and we just sat there like that for a while, shaking our heads, watching the kids play.

As we all got up to say goodbye, I said to her, “Something really good must be coming your way after all this.” “Yeah,” she said, chuckling. “My friend at work says I must have been a real bad-ass in a past life. Imagine that? Me, a bad-ass.”

We hugged. I squeezed her hand. On the way home, I thought of the email from Drew, the N.E.D. widget he’d asked me to place on the blog. Suddenly, I knew I had the only reason I needed to do it.

Yesterday, I emailed Gail to ask her permission to write this. Here’s how she replied:

Jena: Thanks so much for your message. I am totally fine with you sharing my story. That is really one of the only consolations in all of this – that my experience might benefit someone else going through the same thing. It can be a very lonely experience no matter how much support you get.

It was great to see you on Saturday – thanks for being such a good friend to me.

We all know this: the statistics are alarming. The chance of developing invasive breast cancer at some time in a woman’s life is about 1 in 8 and in 2009. That’s one out of every eight friends at Girls’ Night Out. One out of eight of us reading each other’s words.

Statistics like these can feel impersonal and distant – until I look into my friend Gail’s warm brown eyes. I am so grateful that she’s here, at once shaken, humbled, and moved by her story.

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This post is to honor Gail, my brave and beautiful friend. And to honor all of our sisters, neighbors, mothers, and daughters who have endured gynecological cancers. May our stories bring each other strength. May there be no evidence of disease. May you love your people and let them love you back.

***

p.s. I still can’t figure out how to get the widget to show up in my sidebar. Until I do, you can check out the N.E.D. (No Evidence of Disease) website to learn more about this group of cancer doctors who are rocking out for a cause.

12 thoughts on “N.E.D. (No Evidence of Disease)

  1. Pat says:

    Thankyou Jena,for sharing Gail’s story, she has such a warm, caring,loving spirit,her eyes beam with radiant joy,i am blessed to know her,and give thanks that Gail is my sister in law.Thankyou Gail for counseling my wife,you are special!
    with love,
    Pat Thomas

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  2. Joanna says:

    Thank you sister and Gail. I too have a good friend and her two sisters who have the gene and suddenly their lives are upside down. This post will help us all go from strength to strength. May the new Jewish new year bring love, joy and healing to all of us. Amen.

    Like

  3. Wild Roaming One says:

    Jena, I have never been touched by cancer up until my grandmother passed away this summer. but it wasn’t traumatic or heartwrenching due to the natue of our relationship, and so I’ve no point of reference to any of the pain and chaos that surrounds this disease.

    But hearing Gail’s story…by your own words drenched in love for her, I DO feel the pain of it all, finally, I get it. ANd I get what Gail says about it being a lonely journey despite the support, and I get wanting to spread her story so that other’s may be helped by it.

    You, Gail and NED are now on my radar…thank you.

    WRO xo

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  4. Kim Ormsby says:

    Jena,
    Thanks so much for sharing Gail’s story in such a touching and personal way. My tears keep flowing….I am Gail’s oldest sister and I am so proud and honored to say that! She is so precious to me and I thank you for sharing her story and enlightening others.
    With much love and thanks, Kim

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  5. Nancy Flynn says:

    Thanks for sharing this. Gail was one of my first freinds in Brattleboro almost 20 years ago. She is one of the most beautiful women I have ever know. I knew she would get through this as she is so strong and always have a postive out look with life. I am also proud to know her and her beautiful family. With lots of love a old freind, Nancy Flynn

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  6. Gail says:

    Thank you, Jena. I so appreciated you doing this back in September and am buoyed by your comments again today as I am not feeling especially brave. As my wonderful counselor has had to remind me as I battle my own feelings of impatience, disappointment, and fragility, “Healing is not a linear process.” Damn.
    Besides thanking Jena, I wanted to make a comment about my experience with genetic testing and gynecological cancer. Testing positive for the BRCA1 gene predisposes you to breast and ovarian cancer. Armed with this knowledge one sister chose to have a hysterectomy and another sister and I chose to have oophorectomies (ovaries removed). Ovarian cancer is so insidious and very difficult to detect early. Given that risk the surgery was an empowering option that has given all three of us tremendous peace of mind. Everyone makes choices that are right for them and allow them to sleep better at night. It is always good to have options even if some choices are difficult to make.

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