Dedicated and caring patient advocate Pat Killingsworth passed away Thursday morning, February 11th, on his 60th birthday, from a brain aneurism. His quick decline was, and still is, a complete mystery. He knew things were not going well, but he was determined to make it to his birthday. And he did. It says a lot about the kind of person Pat was. Pat was a rare breed of myeloma patient who dedicated much of his time every day to making sure that others with the disease were cared for. He did this for the years following his diagnosis and blogged daily about relevant topics for his fellow myeloma patients, survivors and warriors.
Because Pat was a fighter, he chose to continue the fight with tandem transplants. He was finally in complete remission and free of myeloma. He attended ASH 2015 with me just a few weeks after his second transplant was completed. He was truly inspiring and even stayed for a few days following for patient advocacy meetings. He was never going to quit.
His goal was simple—to give back. His legacy is not the informative posts he wrote, although many friends have commented on his page that it was their go-to source for information. Pat’s legacy runs deeper than this. Pat took an awful, painful and incurable experience and turned it into an opportunity. It was an opportunity to comfort others in their pain, discomfort and grief. It was an opportunity to educate patients, so they would get their very best treatments and outcomes. It was an opportunity to give a patient perspective and tell doctors, advocacy groups and pharma companies the reality of what patients were feeling, thinking and experiencing. He was at all times “keeping it real.”
A short time ago, my husband Paul returned from a trip to Mexico City where he had meetings with a successful businessman. As they talked about their families, the man mentioned that he had four children, but one had passed away. His son had gone into surgery for a simple tonsillectomy and died in the hospital due to complications. My husband attempted to comfort his friend, but the man said, “Please don’t feel sorry for us. This experience has become a gift. We know he is in a better place than we are. We were able to donate his organs to save the lives of eight children. We created a foundation to help others with similar problems and have helped over 60 children. We have a perspective on life we would not have had otherwise. It has been a blessing.” This family’s adversity had become an opportunity. When Paul then shared that I had multiple myeloma, he said, “Congratulations.” Paul was taken aback and said, “That is a unique way of looking at things.” With great kindness the man said, “I say congratulations, because you will have a new perspective on life that few people will ever have. You will learn lessons that others will never learn. You are being taught at a higher level.”
For those of us with cancer, we have been dealt a deck we never wanted and wouldn’t wish on anyone. When adversity like cancer hits, what are we supposed to do? Maybe unknowingly, Pat asked three key questions that drove him to become one of the most beloved myeloma advocates in the world. The questions are important for us all:
- What am I supposed to do?
- What am I supposed to learn?
- Who am I supposed to serve?
The first question leads us to ask questions, seek out answers and become diligent in taking control of our care. Pat could have gone to the clinic, received his treatment and written a blog about the injustice of his diagnosis and his constant bone pain. He could have been satisfied with the advice of his local oncologist, never asking questions. But he didn’t. He started reading research papers, attended myeloma conferences, sought out second and third opinions and made contacts with the pharma companies, wanting to know what was out and what was coming next. He spent time connecting with and learning from other myeloma patients. In his search, he was a willing advocate for himself and was never content with the status quo.
His asking of the second question led him to greater depth of knowledge. The lessons weren’t just about the science behind myeloma. He asked himself questions about the reason behind his own mortality; what he was here to accomplish. Was it all just pain and then death? How depressing. He would never have been satisfied with that outlook. These key questions drove his sense of newfound purpose that steered the course of his life and led him to the third and most important question.
Who can I serve? His readership was hundreds of thousands of people needing current information. Patients from across the globe were able to hear about the newest drug announcements, open clinical trials and helpful news from other patients. He had a wonderful personal touch and cared for and attended to the needs, hopes, dreams and struggles of others. Pat changed lives in dramatic ways and knew the secret of happy people around the world. Happy people are not spared trials. They know that life will be full of challenges and perhaps that is its purpose—a school of diligent study, ups, downs, highs, lows, quizzes and exams until we pass our finals and have learned that true joy is found in the service of others. His signature “feel good and keep smiling” was a daily testament to his knowledge that he could change his part of the world for good with a sunny disposition, work, kindness and diligence. As Oliver Wendell Holmes said, he used trouble to build a capacity to handle it. We may not share Pat’s skills, but there is always an opportunity to share whatever talents we have to make life easier and better for one another.
Pat’s adversity became an opportunity to improve the lives of the people around him. He has passed his finals with flying colors, and now it is our turn to continue his work to find a cure. We need more Pat Killingsworths in the world of myeloma and in the world at large. With great respect and love for my dear friend, I say, Pat, I hope you now feel good and are forever smiling.