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:

  1. What am I supposed to do?
  1. What am I supposed to learn?
  1. 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.

Jenny Ahlstrom

Founder, MyelomaCrowd.org and Host of mPatient Myeloma Radio

Pat Killingworth

Pat Killingworth

How do you define a “powerful patient”? For me one embodiment has always been Pat Killingsworth, living with multiple myeloma since 2007. An author, a blogger, an advocate, I have met Pat several times, and—along with my colleague Carol Preston—we have interviewed him patient-to-patient, often. A couple of years ago during an interview, Pat broke down when I asked him about how he viewed the future. For any of us, it can be so uncertain. But happily, Pat did have a future after that.

I am sorry to tell you that came to an end today as we got word of Pat’s passing.

All of us at Patient Power and, I am sure, throughout the myeloma community, are saddened by his death, and our condolences go out to his wife and family.

Here’s a quote from one of our interviews with Pat where he was a realist and an ever-positive person:  “I’m on bonus time. I mean, to me, this is all a bonus, and there are some gifts that go along with it. Some are larger, some are small, some are sort of fun. For example, if I’m walking down a dark alley, I’m not scared anymore. I’m not afraid to fly. I’m on bonus time. But it can be disconcerting. It can be difficult, but it certainly helps you appreciate….what you have and every day.”

Pat echoed what others have said about the “silver lining” of a cancer diagnosis—less often sweating the “small stuff” and enjoying each day.

In this age of more and more clinical trials, more and more lines of therapy, the hope for making cancer ever “chronic” if it can’t be cured…in this time of Joe Biden’s “moon shot” to cure cancer…unfortunately, this devil still steals so many lives.

In December, Carol interviewed Pat at the ASH hematology medical meeting. He was there, as he has been so many times before, as a patient to meet and support others. He was recovering from a transplant and hopeful it could do what other therapies had not—beat the devil even deeper. Pat was upbeat. But multiple lines of therapy on top of the illness itself can take its toll.

And now it has with Pat.

We will miss his positive—yet realistic words—and his smile.

Wishing you and your family the best of health!

Andrew

I know we’re talking about lung cancer with 2016 World Cancer Day arriving.

I know that no one is comfortable talking about lung cancer. It’s the elephant in the room, about “moving the needle” and, of course, “white is the new pink”—all efforts to talk about lung cancer. In recent weeks, there has been a lot more to talk about. The most exciting talk is about the “moon shot” effort and the influx of governmental support and eventually a whole lot of research funding to find cancer treatments and cures.

My story, Jillian’s story, sadly, is not unusual or exceptional: being 28 at diagnosis and passing away just 10 months later at 29. When Jillian first felt a swollen lymph node, the farthest thing from her mind and ours was cancer. Any cancer. Lung Cancer. She had done everything on a “normal” schedule: wanted a boyfriend way too soon—after all, daughters aren’t supposed to date until they’re 40, are they? Homecoming dances, proms, summer jobs, college…Check, check, check. Jillian getting cancer was in no way on anyone’s radar or in her dreams!

But there it was…ultrasound to biopsy to minor surgery to remove a lymph node. We were talking—that is, my husband to our sons—but for the life of me I can’t remember talking to Jillian. Really talking to her. There we were: Jillian, her ENT doctor and me in the exam room as he prepped her for the fine needle biopsy. He talked about thyroid cancer. I asked a few questions. But I can’t hear Jillian. I see her sitting there, nervous and anxious. Did she ask any questions with me in the room? I don’t remember. We talked a little afterwards but not much about the “what ifs”—all just mundane daily chitchat. I guess there was some relief that her doctor felt it would be something he could take care of. Jillian could live without her thyroid, many people do. We didn’t focus on cancer. We didn’t talk cancer talk.

Results came in and required more tests and surgery. “We” weren’t talking…we were just doing and going at light speed to figure out what was happening. There was the surgery day, and her best friends were there with us, and neither of them were talking. Where was Jillian? Why wasn’t she talking? Or was she, and we just weren’t prepared to listen? Then the OMG: a sucker punch to the gut when we’re sitting in another exam room with her ENT, a nurse and a computer screen showing lots of glowing spots. The doctor started talking about a tough year ahead. The nurse talked about a cloud being overhead and moving it around day by day. Jillian didn’t talk. “We” talked to Jillian about coming up to Tampa for a second opinion. “We” talked about moving to Miami if that would be best for Jillian. What did Jillian say? “We” talked to friends and colleagues about next steps. And “we” talked Jillian into coming to Tampa for a second opinion. Looking back it was “we”—we talked. Not Jillian talked.

One thing I remember was sitting at Moffitt Cancer Center in the Endocrine Clinic and hearing her talk about what color ribbon “her cancer” would have so that she could “join the club.” A white ribbon was not on our mind. That day, hearing she had lung cancer, she asked the doctor what should she do next. She listened and shortly thereafter, we all left. Jillian went back to Miami to deal with the news by herself. I can’t believe we let her go…drive for hours alone…with enough time to think of all the dreams she had to change and leave behind. We didn’t talk.

Now almost 3 years after all that, I try as hard as I can to remember if we talked about lung cancer to Jillian regularly. I know she and I spoke during an online conversation to educate ourselves—well, me in particular —so that I could learn about diet, nutrition and exercise. She had to be as strong as possible so she could fight this disease. It’s not that we didn’t talk. It’s that I can’t remember talking with Jillian about her life and lung cancer.

Now, I’m talking. In the last year, I’ve talked a lot about lung cancer—so much so that my family felt like they had lost me to this disease as well. I attended conferences; spoke a few times in public about lung cancer with my layman’s knowledge. I wanted to start a national movement to change people’s perceptions, to bring the major “players” together to get on the national scene like breast cancer. Let’s face it—lung cancer isn’t pretty, sexy, pink, well funded or noticed. The only thing lung cancer has going for it is a stigma based on lack of knowledge and compassion, which I am so over.

Then, somehow, funds raised in 2014 to 2015 by Jillian’s Dream along with many other lung cancer research organizations helped discover seven new drugs for lung cancer patients. Awesome! New discoveries. New therapies. New hope. And in the blink of an eye, in a speech that most people wouldn’t ever admit they watched or heard, we have “moon shot” poised to jump start research funding to find cures for cancer. Yes, that includes lung cancer. Chatter is amplified. There is renewed federal support 45 years after the first National Cancer Act of 1971 was passed.

Yes, there is new hope. I’d like to think that Jillian’s effort and courage was a part of this new hope. The talk about doubling survival by 2022 is more possible today. Making lung cancer chronic by 2023—doable? Who knows, but it’s more hopeful now than ever before because we are talking about lung cancer. And I, for one, will keep talking and talking and talking….

Stronger than lung cancer…

Ros Miller

 

World Cancer DayPresident Obama wants to finally beat cancer. We all do. As we celebrate World Cancer Day, can this be THE YEAR where more breakthroughs happen, saving lives and improving quality of life? Since new science, immune-oncology has a glimmer of promise.

Living with two cancers, CLL and myelofibrosis, every day is Cancer Day for me. Every day, I am happy when I feel well. Every day, I wonder what the path could be to a cure. Fortunately for me, I have access to great doctors, elaborate testing, and insurance that will pay most of the costs. When we think about WORLD Cancer Day, anything we have to think about includes great disparities in knowledge and access to care.

Not only do we need to cure the many, many cancer types, but we also need to ensure the medicines and processes for a cure are open to all. That is a huge task.

This is multi-faceted. In the U.S., we still have so many patients who get outdated, toxic care. We still have many patients who never hear about clinical trials that could offer them hope. Most patients are too trusting, too scared, too worn out, and so the opportunity for better care evaporates. In many other countries, it’s even worse.

My goal is to help fill the information and empowerment gap—to help cancer patients and family members everywhere take more control right at the start, to advocate for the best possible care, and to respectfully ask questions. I love the Internet, because it gives us handy channels to come together. Borders don’t matter.

But while I work hard with the Patient Power team on communications, others need to push for funding of research, collaboration among researchers and patients, and to pressure government for simpler procedures to advance approvals for new approaches. Then we need to push for payment for and access to the science that emerges.

This is not an effort that is one day. This is day-in-day-out, fueled by the voices of anyone touched by cancer, concerned about it, or studying how to beat it.

If we truly form communities, we can do so much. No longer should cancer cause one to withdraw, it should be a call to be educated and to engage and raise our voice with others. If World Cancer Day is a spark for a fire that continues to burn, great! But let’s make this the year where we can say we really turned a corner against cancer.

I welcome your comments and wish you and your family the best of years!

Andrew

I am fortunate enough to have some strange and offbeat friends. One in particular really stands out. He is a gifted educator with an offbeat humor, sardonic wit, a big smile and even bigger heart that matches his 6’6” frame. He IS a big guy. Among many things, he taught an interdisciplinary senior design course […]

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A few weeks ago, I wrote a blog called You Only Live Once, which was the attitude we embraced when my husband and I decided to grant our children’s greatest wish—a dog! This was a big decision for us—and one we didn’t take lightly. And it’s a decision, I am happy to report, that I […]

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At the last update, I’d just had a stem cell transplant—three years ago now. Since then, I have been in good shape, taking one pill a day, and a quarterly bone-strengthener, and except for a bout with pneumonia in 2014 and numbness in my feet, I’ve had no infections, colds or other gremlins to deal […]

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Okay, ‘fess up! Did you make a New Year’s resolution? Do you aspire to being a better person, regularly exercise, and generally take better care of yourself? In my case, I promise to be more chilled out, less edgy and try really, REALLY HARD not to be “wrapped tightly” as my friends, family and healthcare […]

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As the year ends, we ask ourselves, how has it been, and are we hopeful going into the next? My feeling as I reflect is that 2015, when it comes to cancer, was a year of significant progress. But that is always tempered with the losses. A couple of weeks ago, we lost one of […]

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