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May 27 2014

Coming Out of the Cancer Closet After 20 Years

By at 4:36 pm

cancer-closet

A few years ago, my mom’s cousin passed away from ovarian cancer. While I live far away and could not attend the funeral or shiva, I wanted to do something and so I wrote a note to each of her children, my cousins, sharing with them personal recollections I had of their mom and hoping that these memories would help bring them comfort. I also made a donation in her memory to the Ovarian Cancer Research Fund.

Since then, I have been receiving the Fund’s email updates and newsletters on a regular basis, usually a few times a month. They have been sitting in my inbox, or when I think to move them, in a separate folder, all unread. I can’t bring myself to delete them because what if, God forbid, I ever need to glean some tiny but important piece of information from them, and yet, I can’t bring myself to open them, because for the past 20 years I have been trying to move on and live a “normal” life. But the fact remains, I am an ovarian cancer survivor.

During my senior year of college, I was diagnosed with Stage 1 of a very rare but also very chemo-responsive form of ovarian cancer. After betting I could keep up with several friends in the gym and doing 200 sit-ups in one day, I woke up in the middle of the night in excruciating pain and drove myself to the emergency room believing I had appendicitis. (In hindsight, I should not have been driving and should have called 911.)

The doctors could find no explanation, and the decision was made to perform exploratory surgery. I had never been checked into a hospital before. I was told to call my family and tell them where I was before I was put under anesthesia. My mom was there when I woke up, and we were told that I had a ruptured ovarian cyst that was drained. We were also told we should arrange to see an oncologist immediately because amidst the drained fluid the pathologist “saw what he thought might be a cancer cell.” I was 21 years old.

I never wanted to be the cancer poster child, but at the time I couldn’t hide it if I tried. While I was in treatment, the telltale signs of chemotherapy were obvious–gauntly thin and pale, a bald head covered by a scarf, no eyebrows. And I remain vigilant about follow ups, flying cross country to see my same oncologist two times a year. But these were the days before email and social media, and so if you didn’t know me then, you probably wouldn’t know about it at all. I share it when I feel like it, usually when people see old photos and ask about why I cut my long hair. But at the time and most of the time since then, I wanted to move on with my life and live, not relive that period. I wanted to fight for the dreams I had even then that I knew might now be a challenge as a result of my health history. Would I find someone to love me? Would I be able to have children? Would he love me even if I could not? I had new issues to be concerned about. I did not have the time to take on ovarian cancer as a cause. A part of me has always wondered what my purpose is, what it is I am meant to do as a result of the experience I had, but I figured someday the answer would show itself to me.

The question of my purpose reasserted itself when I was diagnosed with breast cancer five years ago, which the pathology showed was unrelated to my ovarian cancer. I was a newlywed, and blessed with a loving and supportive husband who attended every single doctor appointment with me. We were aggressive, considering my history, but this additional chemo and other treatment did not bode well for the family we hoped to build together. And so once again, while I dealt with cancer, it did not become my cause. Once again, people around me could see the obvious signs, but many still did not know about my previous battle.

Over the years, the cancer has taken its toll. Building a family was a long and arduous process for my husband and me. But on November 30, 2012, we were blessed with healthy and beautiful twins, a boy and a girl, that every day astound me with their curiosity and laughter. And then, finally, after realizing my most desired dreams of a family, I was able to start opening up. Last year, my doctor at the fertility clinic we used asked and I agreed to be interviewed by the Washington Post for an article about fertility after cancer, and since then part of my story has also been included in “The Cancer Survivor Handbook” by Beth Leibson. But I still never truly came out and exposed myself. A few people I know saw the Post article and contacted me, but I didn’t link it to my Facebook page or Tweet about it or even tell anyone beyond my immediate family and closest friends about it. Until today.

Two weeks ago, as I was checking email before bed, there was the predictable email from the Ovarian Cancer Research Fund. I don’t know what possessed me to open this one, but when I did, I read that it was World Ovarian Cancer Day. And then I saw the date in the bottom corner of my computer. 2014. This August will mark my 20 year anniversary of being ovarian cancer-free. I thought about my amazing husband sleeping in the next room, about my miracle babies dreaming in their cribs, and I thought about all the blessings that I have. I knew it was time. And so in the wee hours of May 8, 2014, I posted this on my Facebook page:

Today is World Ovarian Cancer Day. This summer marks my 20 year anniversary as a survivor (and my 5 year anniversary as a breast cancer survivor). Spread the awareness.

It was daunting making such a public statement that I knew so many people would see. But I’m also glad that I am standing in the light. It’s time. Perhaps my story will now help support, inspire or provide information to someone else.

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