I’ve Had Stage 4 Ovarian Cancer For 5 Years. Here’s What I Know Now About Living.
Five years ago this November, I rode the New York City Q train to a dreaded call-back mammogram. It was my wedding day. I had taken my vows that morning in a last-minute ceremony in New Jersey traffic court. My husband and I had enough time for a few iPhone photos before I changed from a pristine cream wool dress into my old reliable black yoga pants for another series of a very different kind of picture.
The new images from the mammogram were clean. But the ovarian cancer diagnosed a couple of weeks earlier was, according to my surgeon, “massive.”
ER doctors diagnosed my stomach pain as constipation on two visits that same weekend, but my body told me they were wrong. Within 60 hours of that first visit, I was so acutely ill that a surgeon was called in to perform an emergency colostomy because of a nearly complete obstruction from the tumor they discovered.
There I was, still in the hospital, trying to line up a major, risky surgery while I was learning to cope with a bag of waste attached to me that immediately caused an infection. A 12-hour surgery to remove the cancer and reverse the colostomy came one month later to the day.
Somewhere in between all of that, I got married. Who wants to postpone anything when the odds of surviving stage 4 cancer past the five-year mark are so slim?
But here I am celebrating the fifth anniversary of that shotgun wedding. And while I haven’t completely vanquished the beast, I am healthy, happy and active.
My case is not completely exceptional.
“We’re seeing a lot more of this,” my doctor Carol Aghajanian, the chief gynecologic oncologist at Memorial Sloan Kettering, told me. She says there is a growing number of advanced cancer patients who are thriving years after their diagnosis. “We just try to manage it over time.”
Dr. Aghajanian uses the term “chronic” for these cases. This strikes me as both sad and comforting. Sad because it acknowledges the disease may always be with me. Comforting because there are untold millions of people living with chronic conditions.
We think of diabetes and arthritis as treatable chronic illnesses. Cancer never seemed to me to fall into a similar category.
I’ve ingested so many toxic chemicals to keep my cancer at bay that I sometimes refer to my body as Chernobyl. I use acupuncture to help mitigate the neuropathy I have in all my fingers and toes. I’ve lost my hair twice, and I’m learning patience with the wispy thing that has grown back in place of my full, sassy bob. Because of my reengineered GI tract, I follow the lead of my best friend, a five-time cancer survivor who skied nearly 40 days last winter, who says she now knows the location of every public restroom in her community. And I shout out the questions to “Jeopardy!” to push through the fuzziness known as “chemo brain.”
But I also work and play vigorously ― just like I did before. Now I am fueled by an intimate understanding of how precious it is to be alive. I was back in the saddle ― literally ― two months after finishing 18 consecutive weeks of chemo. I rode a chestnut beauty called Sonny and we crossed a river and meandered together in a lush forest in British Columbia. I’ve taught two semesters of university classes while getting chemo. I’ve also done paddleboard yoga, alpine skiing, and hiked steep, gnarly trails. Yeah, maybe I have something to prove ― especially because the stats are still horrible for women with advanced ovarian cancer. Only 17% of those who are diagnosed with stage 4 survive the fifth year, according to the Ovarian Cancer Research Alliance.
So, I have been given the gift of life and I intend to max it out.
I remember an inner voice told me while I was still in the hospital from the emergency surgery that I could not fall apart ― that I needed to be at my best because I would have to make some big decisions soon.
And that meant getting the best care right away. It may seem ridiculously obvious, but many people processing such devastating news often opt for something convenient and familiar, sort of like the neighborhood hospital version of the TV classic “Cheers,” where you know everybody by name. You need to go to a place that is well practiced in complex debulking surgeries.
The Journal of Cancer says the median survival for ovarian cancer has improved slightly over three decades to 52 months from 34 months. These numbers are still awful, but I celebrate every small victory.
That extra time gave me a chance to finally throw a wedding party with family and friends instead of strangers waiting to appeal their traffic tickets.
But that extra time may also allow a patient to try a new treatment like heated chemotherapy and targeted radiation, which are being deployed to treat ovarian cancer.
I was fortunate to be able to travel from the New York City area to Mercy Medical Center in Baltimore, which was in my network for surgery. Hope Lodge offers cancer patients and their caregivers a free place to stay in many cities when their best hope for treatment involves travel. The Sisterhood of Ovarian Cancer Survivors on Facebook is a terrific resource for just about anything connected to the disease.
I serve on the same small-town community board as a woman who is now in her sixth year with stage 4 ovarian cancer. She is our leader ― good luck to the mayor and council members who tell her something she does not want to hear. She and I recently vowed that we would both be around three years from now when we hope one of our key projects, a renovated community center, will be completed.
The American Cancer Society says patients sometimes “feel guilty” because they can’t “stay positive.” And that adds to the heavy load they already carry. But I have chosen to remain optimistic. I know it does not translate into a longer life, but I do know that if I’m motivated, I will make a greater effort at taking care of myself. And that alone is enough to make me feel better.
I do not know what will come my way in the months and years ahead, but who does? And my doctor says I’m doing well. I think I’m doing well. I just have to stomach some nasty stuff from time to time to keep it that way.
One December night three years ago, I was holiday shopping online when I got a notification that the results of routine labs performed on me earlier that day were available to view. The levels on a blood test that tracks tumor activity had jumped. I knew I had a recurrence.
At that moment, I remembered many of the suppressed details from my first year with cancer ― the choking sensation as I awoke from anesthesia, the dread of plunging a needle into my stomach every day for 30 days to reduce the risk of blood clots, the profound weakness that left me unable to speak for more than a few minutes.
I steeled myself to go back to the hospital and back on the juice. When I arrived in the chemo suite, Carly, one of my favorite nurses, said, “Oh, you’re here for a tuneup.”
And that is how I’ve approached managing my chronic condition since. Whenever cancer reoccurs, I go in for a tuneup, which is what has allowed this engine to keep running.
Susan Lisovicz is a journalist, educator and badass good-doer. She worked for 25 years as a correspondent at CNN and CNBC. She is best known for her business reporting from Wall Street, where she was a frequent presence during the dot-com boom, 9/11 and the Great Recession. She has taught at the CUNY Graduate School of Journalism and her alma mater, William Paterson University, where she received the President’s Medal. The bulk of her teaching is at Arizona State University’s Walter Cronkite School of Journalism. Susan’s consulting includes work with executives from UPS and Brown Forman in the U.S. and Europe. She has also reported for The Associated Press and written stories for the Arizona Republic, Yahoo Finance and The Washington Post.
Susan has been a recipient of two East-West Center journalism fellowships in Asia and a RIAS fellowship in Europe. She is a former president and board member of the New York Financial Writers Association. If she’s not working, she’s playing. With her guitar. In her kitchen. On the trail. In the water. On the yoga mat. She’s open to suggestions for new activities.
Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch.