A Healthline writer recalls his conversations over the years with the billionaire philanthropist about how to live with cancer.
For all his well-documented success, Paul Allen never let his fortune or fame change him much.
Allen, who created the software giant Microsoft with Bill Gates in 1976, died on Monday afternoon in Seattle of complications from non-Hodgkin’s lymphoma.
Allen originally received a diagnosis of Hodgkin’s lymphoma in 1982 and then non-Hodgkin’s lymphoma in 2009. His non-Hodgkin’s lymphoma recurred this year.
Allen, who owned the Seattle Seahawks and Portland Trailblazers, was a study in contradictions.
Quiet and reclusive, he wasn’t especially enamored of speaking in public or being in the limelight.
Yet, he willfully chose a high-profile life after Microsoft in global philanthropy and professional sports ownership.
Allen was determined to make the world a better place.
And he did just that, giving his time and money — billions of dollars — to an array of worthy and diverse causes.
The news of Allen’s death hit me hard.
A decade ago, I conducted a set of conversations with Allen about his cancer that left a lasting impression on me.
The interviews were for my book, “Hope Begins in the Dark,” which tells the stories of 40 lymphoma survivors, including celebrities
In our conversations, Allen was wise, kind, unpretentious, funny, childlike in the best of ways, and as “normal” as a person could be.
Allen was indeed a role model for bravely handling his cancer and giving so much to others.
Although the Allen interviews were all on the record, they weren’t really journalistic in nature. They were wholly personal. And Allen had no problem with that.
He was genuine. He never put on airs. What you saw was what you got.
The bond we forged was largely the result of the fact that we were fellow lymphoma survivors.
I’m a three-time, 22-year survivor. Allen was a three-time, 36-year survivor.
We found we had many things in common, including a love for playing guitar. Allen, who gave up the violin for electric guitar when he was 14, was in fact a skilled guitarist and songwriter. It seems there were few things he couldn’t do.
In 2000, he purchased the Fender Stratocaster Jimi Hendrix played at Woodstock, which now resides at the EMP (Experience Music Project) Museum, the Seattle rock music and pop culture museum Allen founded.
Allen also purchased the Fender Strat’ that Eric Clapton played on the song “Layla,” from Clapton’s initial auction benefiting his Crossroads charity.
But our talks were mostly focused on our respective cancer battles and how we each navigated the cancer patient-survivor journey.
Paul Allen and Bill Gates met when they were students at Lakeside School in Seattle.
Allen, who was two years older than Gates, later convinced his childhood friend to bail out of Harvard to start a software company.
In summer 1982, Allen was on a business trip to Europe when he felt a bump on his neck.
He wasn’t feeling well. He knew something was wrong.
“I felt strange enough that I decided to cut my trip short,” Allen told me. “When I returned, my doctor looked at the bump and he said, ‘You need to get a biopsy tomorrow.’”
The initial diagnosis was non-Hodgkin’s lymphoma.
“The doctors basically had that ‘less-than-50-percent-chance-of-surviving’ look on their faces,” Allen recalled.
“It wasn’t good. But then the results came in a couple days later and the doctors were all smiles when they told me that I had Hodgkin’s lymphoma.”
While both cancers are treatable and beatable, Hodgkin’s lymphoma was more successfully treatable than non-Hodgkin’s lymphoma.
But getting a cancer diagnosis was still a great shock to Allen, who was 29 at the time.
“The hardest part for me about having cancer was those first few days,” he said.
“It took some time to first internalize the fact that I might not make it, then go from that to having a much, much better chance at a cure.”
Allen, who was still Microsoft’s chief technologist when he got his diagnosis, said his treatment was comprised of 2½ months of radiation, five days a week.
“When I was first diagnosed, I made a few mistakes,” he explained.
“For one, I bought this 2½-inch-thick book on Hodgkin’s disease and started reading it. Big mistake. To see people in the book with bad outcomes, well, it was the wrong thing for me to do.”
Allen said the best thing to do when diagnosed with cancer is “just to bull your way ahead and not worry about the statistics or the survival numbers.”
Allen acknowledged that having cancer is tough, but he said his father flatly told him he just had to “tough it out.”
“My father had gone through testicular cancer and he was a really staunch and supportive person. When I was diagnosed, he was there for me,” said Allen.
He said cancer taught him the value of staying optimistic.
“Don’t focus on the statistics because you just don’t know if you’re going to be in that 90 percent or in that 10 percent,” he said.
“You have to be tough, and always stay positive. I know it’s easy to say, but
Allen, who left Microsoft in 1983, went through a “this is unfair” phase, as so many cancer patients do.
“You can be negative and feel down if you want, but then you hear stories about young children, for example, who are stricken with cancer,” he said.
“I have a friend whose 6-year-old child died of leukemia. When you hear things like that, you realize that you just have to savor every moment.”
Lymphoma, which is the most common type of blood cancer, is a general term for a group of cancers that originate in the lymph system, which carries white blood cells that fight infections and other diseases.
The two most common types of lymphoma are Hodgkin’s lymphoma and non-Hodgkin’s lymphoma.
More than 8,000 people receive a diagnosis of Hodgkin’s lymphoma in the United States each year. About 1,000 people died from the disease in 2018.
More than 70,000 people receive a diagnosis of non-Hodgkin’s lymphoma annually in the United States. Almost 20,000 people died from the disease in 2018. There are 90 types of this cancer.
Allen had both Hodgkin’s lymphoma and non-Hodgkin’s lymphoma in his lifetime, which is uncommon.
When he was recently told that his non-Hodgkin’s lymphoma had recurred, he tweeted optimistically:
“Some personal news: Recently, I learned the non-Hodgkin’s lymphoma I battled in 2009 has returned. I’ve begun treatment & my doctors are optimistic that I will see a good result. Appreciate the support I’ve received & count on it as I fight this challenge.”
When I heard the news earlier this month that he was being treated for lymphoma, I hoped and expected he would once again beat it — especially given the fact that there are so many more viable treatment options available now for the disease than there were when he first had
These include targeted therapies and immunotherapies that harness the body’s immune system to fight
Among the most heralded of these new treatments is CAR-T cell immunotherapy, which engineers the body’s T cells to find cancer cells and destroy them.
“A lot has happened in medicine since I overcame this disease in 2009,” Allen wrote after his recent recurrence. “My doctors are optimistic that I will see good results from the latest therapies, as am I.”
Allen died just weeks after writing that note from “complications related to his lymphoma,” his company, Vulcan Inc., announced this week.
For Allen, there was life after Microsoft.
The profound mark he left on the world extended far beyond his computer genius.
And he was deeply appreciative of his life and never took it for granted.
“You have to really recognize that beautiful flower that you see, to literally stop what you are doing and walk over to that flower and smell that flower,” he told me.
Allen, who never married and had no children, stressed the importance of spending quality time with friends.
“You have to take extra moments with friends,” he said. “We all get caught up in the rhythm of our lives and we lose our way, we lose our balance. This is something I realized when I was going through my cancer treatment.”
Allen added, “I was thinking that I had been working too hard and that there were things I really wanted to do in life that I had put off. I wasn’t going to put them off anymore.”
So, he explained, during the breaks in his radiation treatment, “I’d go skiing and scuba diving — two things I had always wanted to try. There was just no reason to put this stuff off any longer. No reason whatsoever. That’s how we all should look at life.”
Allen said that having cancer made him a better person.
“Your consciousness changes when you go through something like this. Having cancer can be a horrible thing, or it can be a learning experience, an opportunity to raise your consciousness,” he said.
Perhaps the thing he said that had the greatest impact on me over the years is that the lessons you learn from battling cancer often tend to recede, they can fade over time like an old newspaper.
“You sometimes have to work to hold on to those things you learned,” he said.
“It’s good to get back to your normal life, of course, but it’s also important to remember the things that the cancer inspired in you. Some of that thankfully never leaves you. It’s hard to quantify, but part of it becomes subconscious.”
Allen said having cancer also showed him the importance of balance in your life.
“I was simply working too many hours a day,” he said.
“I left Microsoft after my illness, and yes, my cancer diagnosis was one of the reasons I left. Microsoft was a very intense environment. No one knows exactly how we get lymphoma, but certainly there are a number of factors involved, including stressors and lifestyle as well as genetic predispositions.”
When he was a child, Allen said, he knew a girl who got Hodgkin’s, “which makes me wonder if there was a connection there. “
Allen told me that “catastrophizing the situation doesn’t do anyone any good.”
He said he learned through his cancer fight that we all have a core of strength inside us.
“Many of us don’t even know it is there until we are really challenged,” he said. “If you would have told me, ‘Paul, you can adjust to having radiation five days a week for two-and-a-half months,’ I would have said, ‘Are you kidding me?’”
Allen said it’s important for cancer survivors to find distractions and to re-engage yourself in the rhythm of your life.
“When I was being treated for my cancer, I closely followed my favorite basketball team,” he said.
“Every day, it’s important to find something you love, something that you enjoy. Whether it’s music or sports or whatever it is, you’ve got to try to find something positive — no matter how big or small. When you are told you have cancer, you need to run toward the things that make you happiest in this world.”
Allen told me that he decided many years ago to dedicate the majority of his fortune to philanthropy.
“I believe that those fortunate to achieve great wealth should put it to work for the good of humanity,” he said in his Giving Pledge.
“The Giving Pledge reminds us all that our net worth is ultimately defined not by dollars but rather by how well we serve others. Ultimately, my greatest satisfaction comes from working to make our world a better place.”
Committed to making this a better world, Allen credited much of his passion for giving to his bouts with lymphoma.
In the past four years of his life, as if he somehow knew he was going to get sick again, Allen seemed to turn up his giving yet another notch:
- In 2014, he donated $100 million through his foundation to take on the Ebola outbreak that had devastated West Africa the year before.
- That same year, he gave another $100 million to start the Allen Institute for Cell Science to better understand how human cells work and their role in human diseases.
- In 2016, he gave another $100 million grant to launch the Paul G. Allen Frontiers Group, an effort to foster bioscience discoveries through new and unconventional practices.
- And earlier this year, he reportedly gave $125 million to his Allen Institute for Artificial Intelligence, which he created in 2013, for a new research program.
Allen and I laughed a lot during our conversations, perhaps because at the time we were both in remission.
Overcoming cancer does tend to make you a bit giddy.
We agreed that cancer patients should try to maintain a sense of humor whenever possible.
“I remember one time I was in the cancer center waiting to receive my radiation. I was sitting there with a number of lung cancer patients and, of course that is a very difficult type of cancer as we all know,” Allen said.
“Well, we were all just sitting there in the waiting room and this guy comes to the door, pops his head in and shouts, ‘Hey, is there a cigarette machine in here anywhere?’”
“The nurse replied indignantly, ‘No, sir, there are no cigarette machines in a cancer center.’”
Allen said that he and the rest of the patients in the room just started laughing out loud.
“It was a very welcome moment of levity,” he said. “Humor is essential when you are going through this type of thing. Sometimes, you just have to laugh.”
Reacting this week to the news of Allen’s death, Gates said that personal computing would not have existed without him.
“I am heartbroken by the passing of one of my oldest and dearest friends, Paul Allen,” Gates said in a statement.
“From our early days together at Lakeside School, through our partnership in the creation of Microsoft, to some of our joint philanthropic projects over the years, Paul was a true partner and dear friend. Personal computing would not have existed without him.”
Gates noted that Allen loved life and those around him, “and we all cherished him in return. He deserved much more time, but his contributions to the world of technology and philanthropy will live on for generations to come. I will miss him tremendously.”