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Pat Killingsworth: The Myeloma Community Lost An Inspirational Patient Advocate

April 2016 Vol 2 No 2

He underwent radiation therapy, chemotherapy, and stem-cell transplantation, but his disease kept coming back (relapsed) many times. Since his diagnosis, Pat published books, attended medical conferences, spoke at cancer support groups, wrote a monthly column for the Myeloma Beacon, and maintained 2 online blogs. But above all, Pat continuously gave back to patients with multiple myeloma who needed his support. Throughout his cancer journey, Pat’s wife Pattie, who is also a cancer survivor (and cancer-free today), supported his efforts; they worked as a team to help other patients with cancer and survivors to cope with their disease.

Pat wanted to chronicle his cancer journey in a blog, so that he could reach people in need and help them understand their disease. He’s accomplished this goal and so much more. Pat provided important resources to patients and their caregivers, writing about new treatments, support services, inspirational stories, and helpful treatment tips.

Hope and Inspiration

Pat’s blog was a testament to his strong character. In one of his last blog posts on www.multiplemyelomablog.com, titled “Tough Day for Me and My Blood,” Pat wrote about undergoing procedures for his failing kidneys. “Plasmapheresis and dialysis on the same day? My body is buzzing; literally buzzing. But it all seems to be working,” he wrote.

Pat added, “Pattie and I met two new doctors today. Five different doctors are trying to solve the mystery of what’s gone wrong, I’ll share what they had to say, but I left my notes upstairs. Pattie was there and jotted things down, too. Hopefully I’ll feel up to doing a technical post on Super Bowl Sunday—not as exciting as new TV ads, but it should be enlightening.”

Despite his difficult day, Pat ended that blog post with a photo of the view from his hospital room, saying, “The best part of my new journey? Check out this amazing view of the St. John’s River from my room in downtown Jacksonville.”

Surely, this is the epitome of hope and inspiration.

Working with the International Myeloma Foundation

Robin Tuohy, Senior Director of Support Groups for the International Myeloma Foundation (IMF), had the pleasure of knowing Pat for many years. Robin shared her thoughts about Pat with CONQUER magazine.

“Pat Killingsworth was a fighter, an advocate, someone who spoke his mind, and was always there to offer help to others. I’ll mostly remember Pat as a friend,” Ms. Tuohy said. “When Pat was first diagnosed, he became an active member in his local myeloma support group in Stillwater, MN. Pat and his wife, Pattie, moved to Florida, and the IMF helped Pat to start a myeloma support group there.”

“Pat always wanted to be on top of the most up-to-date information, and the IMF invited Pat to attend its annual Support Group Leader Summit and to join the IMF at the American Society of Hematology meetings as a patient advocate. Pat was tireless, always asking questions and sharing his knowledge. His good work will always be remembered, and we will honor Pat by continuing to help others,” said Ms. Tuohy.

Tributes from Readers

Committed to updating his blog daily, Pat narrated his victories and disappointments 7 days a week, without fail. Signing off each blog post with, “Feel good and keep smiling,” Pat’s positive attitude rippled through the online oncology community, and his story resonated, even among those he had never met.

Upon his passing, many of Pat’s blog readers wrote tributes to him. One wrote: “Pat will be missed. Unfortunately, no one can fill his remarkable shoes. I can’t remember a man’s passing that has affected me so much whom I have never even met. He worked endlessly to help myeloma sufferers. He knew every drug by its trade and generic names, what class the drug was in, and what it did. I can’t even remember my own handful of drugs that are saving my life. But everyone already knows how knowledgeable he was and eager to share.”

Bob M wrote: “I don’t think I have ever been more emotionally connected with someone that I haven’t met in person before. Pat conveyed his spirit and caring so effectively, and shared so much of his feelings in his daily writings, that each of us felt completely connected to him, his life, and his struggle with this damn disease.”

And Ed W added: “When people told Pat to slow down, he laughed and waived it off. He wrote books—important books with critical advice on how to understand this disease and manage the ceaseless treatments. Then he gave his books away or donated the proceeds to the fight.”

Myeloma Beach Party

In 2014, Pat launched Pat’s Myeloma Beach Party, a 3-day educational and social event in Fernandina Beach, FL, for patients and caregivers, featuring seminars, meditation, and a 5K walk. Renamed as Pat’s Myeloma Survival School, this year’s event will be held April 1-3 in Fernandina Beach, FL. To participate in this event and walk in honor of Pat’s life, visit www.myelomacrowd.org/muscles-for-myeloma-team-pats-beach-party-walk/.

About Pat

Pat Killingsworth published 2 books: Stem Cell Transplants From a Patient’s Perspective and Living with Multiple Myeloma. Both books can be ordered online from Amazon (at www.amazon.com/Stem-Cell-Transplants-Patients-Perspective/dp/0984775935 and www.amazon.com/Living-Multiple-Myeloma-Pat-Killingsworth/dp/0578003392).

Pat also had 2 ongoing blogs since his diagnosis: www.multiplemyelomablog.com and www.helpwithcancer.org. He had dedicated followers who communicated with him regularly on his blog, and he provided scientifically accurate and detailed education and information for patients with multiple myeloma.

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