Taking control: My approach to dealing with chronic disease

by Sheryl Jedlinski

Living with two progressive, incurable diseases — Parkinson’s and cancer – has taught me to be a strong advocate for myself, learning and speaking up for my rights, and gaining greater control over my health and medical decision making. Any regrets I’ve had come from ignoring my gut instinct and not speaking up for what I needed or wanted.

Several weeks ago, my CT scans revealed that my cancer had come back for the third time in five years and was spreading. I had suspected this for a couple of months prior based on successive rising tumor marker scores. My medical team, however, convinced me to adopt a “wait and watch” approach seeing as how my scores remained well within the “normal range.” Unfortunately, this tells only part of the story as my scores were clearly trending in the wrong direction and it was only a matter of time before they fell into the abnormal area. The earlier we catch recurrences of cancer, the more options we have to treat them.

My two oncologists initially did not agree on my next course of treatment, leaving me to take matters into my own hands. I obtained an online second opinion from medical experts at a large teaching and research hospital in Boston. After reviewing my reports, scans and pathology (500 pages in all), the doctors recommended options including several treatments and two clinical trials some of which were not even available when I was first diagnosed.

Today, new and improved knowledge and treatments that have the potential to knock out cancer once and for all, rather than just managing it, are gaining approval at a fast pace. Among the most promising is immunotherapy that helps a person’s own immune system better recognize and kill cancer cells. Treatment can shrink the cancer, help relieve symptoms, and help patients live longer.

Whatever happens going forward, I count myself among the lucky ones.  Most women diagnosed with the same type and stage of cancer as me, do not make it to the five-year survival mark despite their best efforts.  I don’t know yet how my story will end, but I can say that the extra time gained by taking control is allowing me to realize my dream of becoming a grandmother, something I feared Parkinson’s would deny me. Now, I cherish every moment spent with my two beautiful granddaughters – one who was born just a week ago.

To all of you who have stood by me over the years, sending prayers and positive thoughts my way, I thank you from the bottom of my heart. I have come back before from what seems to be insurmountable odds, and with your friendship and encouragement I am certain I will do so again.

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