April 28th was the fourth anniversary of the most frightening event of my life. I found myself remembering, in sharp detail waking up hemorrhaging, the ambulance ride to the hospital, the cold delivery of the news that it looked like cancer, blood transfusions, another ambulance ride to a different hospital, more transfusions, and a biopsy that became the surgical removal of a large tumor. All of this was the beginning of what would be a year like no other. I remembered walking into the oncology office a few weeks later, being handed the purple folder that would introduce me to the realities of what lay ahead, hearing the gynecologic oncologist tell my family and I that my cancer was stage IV and possibly a highly aggressive Carcinosarcoma, going home and looking up the frightening statistics that accompany that diagnosis, and praying my kids wouldn’t do the same. PET scans, port insertions, chemo education, insurance information, weekly labs – these filled my days, and in between all I could think of was that I had to find someone who had survived this.
I knew no one with Endometrial Cancer, despite the fact that it is the most common gynecologic cancer. I had no idea where to even begin finding such a person. The women who filled the chairs of the chemo suite every third Tuesday were battling right alongside me, but we were all too scared and pumped up on Ativan to be able to really talk to each other. Instead I turned to others who had experienced a cancer diagnosis. A colleague’s husband who was undergoing treatment for throat cancer spent two hours in my living room talking me through the specifics of chemotherapy before my first treatment. My husband’s best friend who had been through radiation for prostate cancer prepared me for the ins and outs of radiation. A dear friend who had battled colon cancer more than a decade before became my greatest cheerleader, coaching me through my journey with encouragement, surprise gifts, and hope. As I went through that year of treatment, I learned that my prognosis was not as dire as once thought, that slow infusions allowed me to tolerate the Doxorubicin and Carboplatin that coursed through my veins every month, and that I was fortunate not to lose my hair or experience any serious side effects from treatments. I learned that I was blessed with a highly skilled doctor, wonderfully supportive family and friends, and a strong faith that could get me through hard times.
But I still felt a need to connect with others who had experienced exactly what I had. There are elements of having a gynecologic cancer that can be humiliating – the unending pelvic exams, the shock of being presented with vaginal dilators following radiation, the horror of brachytherapy, and the fear of physical intimacy following treatment. No one prepares you for these things, but it would have been comforting to have had the chance to talk to someone who understood exactly what I was going through, a mentor with a similar story.
When the opportunity arose a few months ago to talk with a newly diagnosed endometrial cancer patient, I jumped at the chance and was able to visit her in the hospital and talk about our shared experiences, helping to ease some of her anxiety about having radiation treatments. I have begun to mentor a woman in California who recently started her treatments for stage IV endometrial cancer, through the Imerman Angels program as plans for a local mentorship program are worked out. And twice a month I man the SHARE Helpline, supporting this wonderful non-profit organization out of New York that recently added Endometrial Cancer services to their support programming for cancer patients in underserved areas. These volunteer opportunities allow me to use my experiences to share the hope that comes with surviving, to continue to live a life of joy and purpose, and to pay forward the help I received from the mentors that walked me through the most frightening event of my life. Maybe that’s what this journey is all about.