Supporting my friend: A year and a half after my friend Debbie had been diagnosed with aggressive cervical cancer and underwent a hysterectomy, her doctor found a lump under her arm. She was diagnosed with metastatic cervical cancer – stage IV. I had accompanied her to the doctor and listened to the doctor’s suggested treatment plan of extremely toxic and high dose chemotherapy. When I inquired as to how many times this doctor had treated cervical cancer that had spread to this region, she responded that she never had. She told us it was not something documented as ever happening and there was no textbook to refer to; so she was just “guessing” at the best treatment plan.
At this point, I and another friend (who happens to be a nurse and legal consultant) jumped into survival mode. We researched everything, including information on a study from Switzerland regarding women with metastatic cervical cancer. We were able to get more information by communicating via email with many helpful medical researchers. With all this information, we helped direct my friend to the right physician at Memorial Sloan Kettering Cancer Center.
My Own Medical Journey: Right around the time that Deb was finishing treatment, I received a call from my OB/GYN about an abnormal Pap and was told to come back in for a colposcopy. I found out that I had high risk HPV and an abnormal biopsy. I immediately got myself into a clinical trial that was being conducted at Memorial Sloan Kettering for women with abnormal Paps and high risk HPV and was treated there.
As we were approaching the 2-year and no recurrence mark, I went in for an exam and began to bleed. My doctor did a colposcopy right then and there. Changes were occurring again in my cervix so she then suggested a D&C and additional biopsies. I had another flare up of high risk HPV a few years later. Cue the immediate colposcopy! All was negative and has been fine since then.
What I am thankful for: I am thankful everyday that I was able to learn what I did through my friend’s journey, which assisted me in helping myself the best way possible.
What I do to help others: I co-wrote a book to help educate people about their rights as patients. It explains the importance of getting second opinions, obtaining copies of your test results and medical records, and working to understand your own results and records. We dedicated a chapter just to Pap smears and what the classifications mean, as well as HPV and its correlation to cervical cancer. We explained as much as we could so women could get copies of their Pap and HPV tests and understand for themselves what it all meant.
The book was a success. We began speaking engagements throughout the state and accepted an offer to host our own TV show on a local cable network. On the show, we discuss important health topics and host guests who share tips and information to help people become more knowledgeable in medical situations.
I also began volunteering for numerous charities including cancer groups, hospice facilities, and advocacy groups. I continue my work as a patient advocate on many platforms and I believe it is what I need to do.