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My Patient Story

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Mary

State: Pennsylvania
Congressional District: PA01

Diseases

Blood Disease, Cancer

Issues and Challenges

Mary has encountered: Access to Medicine, Mental Health Access, Caregiving

My Story

When my husband Jim was diagnosed with non-Hodgkin's Lymphoma we assumed it was treatable. He was the ideal patient, healthy, positive and cooperative. Then we discovered his was "double-hit", a mutation for which there was no known cure. At one point he languished in the hospital as the surgeon debated with the oncologist whether to do surgery. After 13 months our three children lost their dad.

Our family has said goodbye to a beloved aunt, my sister Patty died after her cervical cancer returned. My brother Rob died of pancreatic cancer, 5 months after diagnosis. Now my brother John who survived esophageal cancer is aging quickly due to the ravages of radical surgery. I have survivors guilt, twice facing breast cancer and opting for lumpectomy, then double mastectomy upon its reoccurrence.

My Motivation and Inspiration

1. Jim wanted to be a patient willing to help "find the cure" through experimental treatment. He was a chemist who believed in scientific solutions. After he died I became determined to be part of finding cures through my involvement with the Leukemia & Lymphoma Society.
2. After we buried Jim I realize my children now live with the conviction that cancer will "get them" someday. Every day I help support cancer research, I feel as if I'm protecting their future. None of our young adult children have the type of job, insurance and financial safety net that Jim enjoyed so a system that cares for patients who otherwise have moderate to poor insurance means we are taking car of Jim's children and their peers.
3. In retrospect I realize that caregivers need the emotional support that I ignored. As I meet more cancer patients and their loved ones, I hope that what I do as an advocate will help them not only survive serious illness, but avoid the side effects of stress and lack of self-care.

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