How (and when) were you first diagnosed with ovarian cancer?
When I was 27 years old, I noticed acute bloating that would not go away. I spent a year bouncing from doctor to doctor—being told there was nothing wrong with me. One doctor on the Upper East Side told me, “Women get like this” when I told him I was concerned about the bloating. “It’s likely in your head.” After exhausting ashrams and nutrition changes and doctors, I finally went to an extraordinary stomach doctor who knew there was an issue. He sent me to get an MRI. That’s where they found the mass.
Did it affect your decision to try and have children?
I was blessed with an oncologist who did not do a total hysterectomy (which is the normal course of action with ovary cancer). And I was blessed by the Universe with the ability to conceive on just one ovary with my first daughter. Then, after another surgery, I was further blessed to give birth to my second daughter on one-half of my remaining ovary. There are no words for the gratitude I feel for those little girls—and the doctor that allowed me to have them.
“My oncologist once brought into surgery an anesthesiologist who looked like he arrived straight from a Phish show. I was unclear if he was sampling his own goods.”
What’s the worst medical horror story you can share with us?
It was that doctor who told me it was in my head. And all the doctors that year who didn’t consider the fact that the bloating could be cancer. I learned that I needed to be my own advocate.
Can you describe any moments of levity that happened along the way?
My friend and I used to use “tumor humor” constantly as a method of distraction. I was not interested in engaging with anyone who was planning my funeral while I was planning my recovery. So, while I don’t recall any knee-slapping, roll on the floor moments, I also didn’t lapse into misery.
What surprised you the most about your experience with chronic illness?
The reaction of others and how isolating it is. You can’t really connect to anyone except people who can empathize. I spent a lot of time with a close friend’s mom. She was in the middle of a 10 year battle with cancer. She had so much peace and acceptance. I loved being with her. The worst part of disease is the fear. I was most afraid when thinking about the future. So as long as I could stay in the present, avoid “future-tripping,” and spend time with someone who understood, I was OK.
“It is not necessarily your best friends that you stick with. It’s the ones who can empathize without hyper projection—or those who can comfort without pity. I was not interested in engaging with anyone who was planning my funeral while I was planning my recovery.”
What’s the latest update in your battle with ovarian cancer?
I was so lucky. I had early stage cancer. I had no chemo. I was able to have children. I am so blessed. Emotionally, it stayed with me. I have had “scares” along the way. At 41, I had stomach issues again. I was diagnosed with SIBO and IBS. I tried every macro / functional / something but that did work to clear up the stomach issues. Ultimately, the oncologist discovered something and I had my fallopian tubes removed. Still, I consider myself so lucky. I have been blessed with health, incredible doctors, the ability to afford medical care, and a supportive family. What more could I want?
What would you say is the biggest misconception about ovarian cancer? Is there anything you wish you could make people understand better?
There is a misconception that ovary cancer does not occur in young women. It does. The symptoms are hard to diagnose. There needs to be more awareness.
If there has been any silver lining to all of it, what would you say it is?
I believe in my heart that what happened to me is a blessing. It enables me to help other women going through something similar. This journey started me down the path of understanding how to create health in my own body. I accept I cannot change my genes, but there are factors we can affect. After the diagnosis, I started to read a lot about lifestyle factors like environment, nutrition, and exercise that are the inputs to longevity and health that we can impact. I have become a passionate advocate for women’s health in everything from nutrition, to healing the body to using chemical-free tampons, to encouraging women to seek out the exercise methodologies that specifically support women’s health and strengthen women’s bodies. We, as women, need to work together to empower and educate ourselves.
How has Sollis been able to support your healthcare journey?
As someone who needs to manage and monitor my healthcare, it is invaluable to have a doctor on call whom I can trust. This has been especially true in the past couple of years, when access to top-notch medical care has been of the utmost importance to me and my family.
What have you learned about yourself—and the human spirit in general?
Self pity and resentment does not serve me. It keeps me from connecting. I need to stay grateful every day for everything that happens to me—even the stuff that seems bad. Because I don’t actually know what the bad is… I don’t know the big picture. Sometimes the things I think are the worst turn out to be the best.
Any good words to live by?
The most important thing a woman can do is listen to her body. If you suspect there is something off, then be your own advocate. Find doctors who will treat you like a human, who are educated in women’s health, who listen, and who look you in the eye. You deserve to feel good in your body. It’s not in your head.
