I knew something was wrong when I saw the missed call and voicemail. My gynecologist never phoned me about my more routine test results, much less from his cell. I usually emailed with him or spoke to his nurse practitioner. Confused, I pressed play on the message. He said he'd call back later that night or the following day.
Panicking, I dialed my mother, who tried to comfort me by pointing out that my doc hadn't mentioned anything about needing a follow-up appointment. Translation: This is nothing to worry about.
I couldn't fault my mom for the wishful thinking. Over the past 17 years, she and my dad have watched me survive a near-fatal heart attack at age 16, heart transplant, leg amputation (due to heart surgery complications), and a couple bouts of cancer — two different forms of non-Hodgkin lymphoma.
But at age 33, I'd been in remission for eight years, and we were looking forward to putting major health complications behind us for good.
The reason I had gone to my OB/GYN in the first place was because I had hoped something could be done about my never-ending periods. I had an ultrasound, but there was nothing suspicious on the scan. My doctor then suggested a biopsy to test for endometrial cancer.
"I don't expect to find anything," he'd said at the time. "Your sample had very little tissue on it, which is good."
Wait — what cancer? I'd always thought cervical cancer was my top threat when I visited the OB/GYN, and all my tests were normal. A quick online search informed me that endometrial cancer — aka cancer of the uterine lining — is the most common form of gynecological cancer and typically affects women who are older than 50, obese, or take estrogen during menopause. I didn't fall into any of those categories. Surely my mom was right and there was no reason to stress. Maybe my doctor was even phoning with good news about how to fix my perpetual period.
And yet, here I was, shaking as I returned his call.
Here We Go Again
My doctor picked up, and as he started to talk, my stomach dropped. He told me he had been surprised to find some pre-cancerous, or possibly even cancerous, cells in the biopsy. Of course. Of course this was happening. Because when it came to health, I was always the outlier, the one-in-a-million case.
The next day, back at my gynecologist's office, I learned that I had slow-growing, stage 1 endometrial cancer. There were two treatment options: hormonal therapy, which involved taking progesterone pills to fight the cancer, or a hysterectomy.
My uterus is rebelling, I thought. That's what this was all about. Two of my most serious relationships had ended because I wasn't sure if I wanted kids. Now my womb was taunting me: "You're not going to use me? I'm out!"
Now my womb was taunting me: "You're not going to use me? I'm out!"
My doctor felt both options carried the same level of risk. I decided I'd been through enough major surgeries, so I chose hormonal therapy. I was first put on progesterone pills, but then later switched to a progesterone IUD, which my doctor said would be more targeted. So far, so good.
Two months later, I had a follow-up to see if the progesterone had worked. I woke up still groggy from the anesthesia to overhear the resident saying they couldn't find my IUD. Um, what? There was no sign of the IUD on my X-ray, which meant it most likely fell out. I was shocked — how had I not noticed that my IUD was MIA? I went home hoping that the IUD had somehow worked its magic before it fell out. No such luck. Days later, my doctor informed me that my endometrial tissue had thickened, and I needed the hysterectomy.
'I'm Too Young for This'
During the weeks leading up to the operation, I scrambled down the rabbit hole of online research in an effort to reassure myself that I wasn't the only 30-something about to say goodbye to her uterus. I was surprised to discover that after caesarean section, hysterectomy is the second most common procedure for women of reproductive age. That news was somewhat reassuring; it meant I'd be able to find advice from someone my age. But as I clicked through online support forums and watched women's YouTube videos documenting their recovery, I realized that most of the sites featured women who were closer to my mom's age.
I don't know why younger women aren't vocal about hysterectomies — perhaps they feel embarrassed — but I was determined not to stay quiet. With my previous cancers, the last thing I'd wanted was pity, so I had only been a vocal advocate once the disease was behind me. But this time around, I wanted to share my journey, especially with younger women. So the night before my hysterectomy, I talked about it openly on social media. Then I geared up for surgery, ready to put an end to cancer once and for all.
It's Not Over Yet...
I woke up from my hysterectomy to the all-too-familiar sound of beeping monitors. Relief turned to confusion when I saw the look of concern on my doctor's face.
"We had to take your ovaries out, too," he said, explaining that they had found suspicious cells on them. The plan, of course, had been to keep them — mainly to preserve the hormonal balance in my body, but also to keep my eggs in case I ever changed my mind about having children.
In one day, I'd lost my uterus, ovaries, and the chance to have babies. Even though I'd been unsure about children, I still felt the loss.
Days later, in the middle of dinner with my family, my phone lit up. Another call from my doctor, another dose of bad news: The cells on my ovaries had indeed been cancerous, and it was impossible to know if others were floating around. They wanted me to have four to six months of chemotherapy to "mop up" anything that could otherwise grow into trouble. I felt deflated. We hadn't even considered chemo as part of my treatment before.
My parents left their entrées uneaten, but I ordered dessert and made myself finish every bite. Cancer was not going to mess with my peach tart — or my life. Hair or no hair, I decided that I wouldn't let chemo get in the way of work, dating, or anything else.
The first round of chemo hit my body the hardest. For three days, my energy was zapped and my fingers went numb from neuropathy, a common side effect. But over the next few treatment cycles, my body adjusted, my symptoms improved, and I found a wig that made me feel (almost) like my old self.
I followed through on that decision to squeeze happiness and purpose out of my days. I rallied patients and supporters at cancer events, kept busy at work, and, with my doctor's blessing, took a last-minute trip to Buenos Aires, a place I'd always wanted to visit. For my last chemo treatment, which happened the day after my 35th birthday, I made a cake to celebrate a new year and a new beginning and shared it with my nurses and oncology team.
After a heart attack, heart transplant, leg amputation, and three bouts of cancer, my prognosis is good, and I'll continue to focus on the positive. Not having ovaries or a uterus means I don't have to worry about getting accidentally pregnant, and being as bald as Mr. Clean significantly cuts down on shower time. (Hey, every extra minute of shut-eye counts, right?) Plus, I no longer have to worry about my period or the hassles that come with it. But perhaps the best part of this experience is that it's given me the chance to broaden the cancer conversation, connect with other young women about endometrial cancer, and remind them that they're not alone.
For more information about endometrial cancer, visit the American Cancer Society's page here.