Ken Mason, beloved AnCan support moderator, passes --ironically during 'psilocybin, meditation, yoga retreat' in the Rockies
Our best to Gary, his husband
By Howard Wolinsky
Ken Mason, well-known support group moderator for several groups at AnCan and himself a patient with low-risk Gleason 6 prostate cancer and two other cancers, has died—though not from cancer. He was 80.
Gary Kebbel, Ken’s partner for 45 years and his husband for the past 13, told me Ken died while at a “psilocybin, meditation, yoga retreat near Denver and had a stroke Saturday evening. Then, they discovered that he also had sepsis and was in septic shock. When I arrived at his bedside yesterday morning, the doctors told me he had less than a day to live. He lasted about 30 hours and passed very peacefully in his sleep.”
In a way, his death at a meditation, yoga retreat seems ironic, was a fitting way to go. A cosmic twinkle at a wonderful friend. With a boost from psilocybin, did he touch the hand of God? If he went to Heaven, should there is one, is he cracking jokes?
Gary added: “At the retreat, [Ken] was seeking the ability to better accept the love people gave him. He knew he was very loved by so many people, but the constant depression hanging over his head wouldn’t let him enjoy that love. He wanted more than knowing he was loved, he wanted to feel it.”
I hope Ken found his peace but I am so sad at Gary’s and our loss. I loved Ken—most in the PCa world called him “Mason”—like a brother. We all did.
(Ken Mason)
He kept me and everyone in stitches at support groups for men with low-risk PCa.
Ken also asked great questions—though he didn’t seem to know it. Communicating with Ken, especially privately, could create Zen moments—and laughter. He was the prototype Laughing Buddha, without the pot belly.
And then, ironically, he experienced the ultimate in “being in the moment.”
Ken had s serious side, too. He had been an MP in the US Army in the Vietnam era, serving in Stuttgart, Germany.
Sometimes things get testy at support meetings—strange, huh?—Ken knew how to defuse a situation, put us back on track, and, if necessary, tell us to take it outside. I picture him now with a billy club and his MP helmet, restoring law and order.
He was the best sort of patient advocate—standing us for what was right for patients and criticizing what wasn’t. He always pitched ideas to improve patients’ experience of dealing with the “Big C,” even the low-risk kind. I recall he recommended we create a glossary of prostate cancer to help patients understand the medicalese. He was brimming over with idea when he wasn’t telling a joke.
Gary said in an email to AnCan founder Rick Davis, “No easy way to say this. Horrible news. Ken had a stroke Saturday evening while on a meditation retreat in Colorado.
“The love of my life passed away this morning quietly, quickly, painlessly and peacefully. He was the purest, kindest soul I know. He was empathy, silliness and love.”
Perfectly expressed.
Gary, retired dean of the University of Nebraska College of Journalism, is a wordsmith and found just the right nouns to describe Ken’s spirit. I don’t remember any of Ken’s specific jokes but I will always remember Ken’s kindmess,empathy, silliness and love.
Rick responded to Gary: “I embrace your description - 'empathy, silliness and love' exuding 'kindness'. I will forever miss Ken's homespun, invariably impractical advice offered with the very best of intentions. These were received on a fairly regular basis. In fact, I became expert in how to respond without offending him.”
Rick added: “He lived much of his life in the present right to the meditation retreat at the very end. I doubt he would have planned his demise better.”
Rick told me: “Ken Mason's death is like one of his lousy jokes. We'd rather not hear it.”
He said he had supported Ken as a patient from late 2013 onwards, when he was a regular in the Reluctant Brotherhood conference call support groups.
“He lived through three cancers - prostate, bladder and kidney. Thank Goodness they were all relatively benign, but Mason still had to live with them,” Rick said.
“That he did with an immensely generous spirit, applying his AA heritage to support everyone willing to hear him. …his quick wit and sense of humor…always cracked me up, and I feel sure many more AnCan'rs.
“Mason was a shoo-in choice for our Moderation Team, when AnCan debuted our early Active Surveillance Prostate Cancer Group back in 2019.
“May Ken Mason's memory always be a blessing to those who had the wonderful fortune to cross his path.”
Kan and I frequently were in touch, usually via email. He would ask me questions about articles I wrote. He always complained about his difficulty in finding the right words to express himself. Yet he always did—though sometimes he had to wrestle with them. His good will always shined through.
I first met Ken at in 2017 at the annual meeting of Prostate Cancer Research Institute in LA. Ken was clowning around at the AnCan booth featuring the Man Junk Contraption explaining the male reproductive system
(Ken Mason, front and center. Back row: Rick Davis, Sylvester Mann, Peter Kafka, and Len Sierra. Man Junk in the background.")
I saw Ken and Gary last year at PCRI. It was great catching up after years of emails and teleconferences. It’s shocking to think we’ll never quip together.
A couple years ago, I met up with Ken at the Art Institute of Chicago for lunch with some other Chicago-based Gleason 6 guys while Ken was visiting from Lincoln, Nebraska.. We had plenty of shenanigans going on. I have a photo—somewhere—of Ken posing with a very attractive young waitress at the Art Institute restaurant. I threatened to blackmail him and his “girlfriend.”
We have had a steady stream of emails over the years. I would try to answer or would put him in touch with experts I quoted.
He was really busy on May 25, commenting on my articles on former President Joe Biden and his cancer.
Ken wrote: “I’m sure you will get lots of questions ,,, about what the heck is happening with former President Biden, My humble opinion is not to engage in any conspiracies theories, but rather see what can we do to stop such an idiotic thing from happening again. Perhaps all candidate health records should be made public. When you are the president of the USA, you are more than obligated to serve your constituency. Sorry, but candidates need to understand they will lose some of their rights because of the rights to their greater audience. Once again, it is my humble opinion that anything that does not prevent things like this from happening again — all the theories and half-truths- need to be possible solutions.
”Too much time wasted on theories and conspiracies. Spend more time on ‘solutions.’ KM”
In another exchange that day, he had some questions for Dr. Jeremy Grummet, an Active Surveillance expert from Melbourne, Australia, who wrote a column on AS for The Active Surveillor about whether Gleason 6 is really a cancer.
After their exchange, Ken wrote to Jeremy: “Thanks so much for your response. There seems to be almost too much information and too many ‘breakthroughs’ we are constantly learning about. It is a wonder we can even try to retain half of the news that is constantly coming to the surface.
”This brings us to another issue, how do we determine what is important for us to learn and ponder?? Some new developments come to us in such disorder and in such difficult to understand language, it is easy to become confused and misunderstood.”
Ken was—I started to say is—always humble but always asking questions like a Talmudic student’s persistent questioning and critical analysis of texts and ideas. Only he was seeking interpretations of guidelines for prostate cancer diagnosis and management and coming up with ideas to help patients.
Back in November, he sent Thanksgiving greetings with some advice on how to improve my newsletter, such as running dividers between articles. I told him I’d try.
He said: “I had thought of adding more in the ‘Recommending Howard’ comment area. The crux being you honed your journalism teeth, and observation skills during the sadly much-forgotten AIDS crisis in Chicago.
“Like the postings better when they have that black bar separating different articles. You often post so much that it is hard (FOR ME) to tell one article from another.
“Perhaps a new event in your posts would be to have 5 people suggest 5 subjects. Choose 2 of those subjects and respond to them. Let some of the people who support you write part of a column. There isn’t anything wrong with letting some other people help with your posts. You can help stir the pot of reader contributions.
“It is always a great idea to let your readers know they are being listened to.
“I have been trying to sign up for sometime, but my computer skills are still for shit. I am hoping that whatever contributions I have been able to make have been done correctly and serve the purpose I intend them to make.
“Trying to push myself to try working more on the computer and figure things out by myself. Not easy.
“Dealing with some of those long held issues of negativity that I still carry, and that weigh me down. This is a great subject for yet another short article from you to AS and PCa men—’How do you deal with the grey cloud of depression that often sets up residence over our heads??; I would like to think the most important thing is just that ‘DOING; something is helpful..Moving 'into action' is one of the most overlooked and underrated medicines that most sick people have. No cures, but a distinct and active try at improvement. It is a form of winning back the power and control we used to have.
“Thanks dude.
“Hope your Thanksgiving is a joyous and happy one. Please take some downtime and enjoy it. The best to you and yours.
“PS glad to hear this helps. You are worthy and deserve it— of course you already know that :-)). mason
Back at you friend.
Last year, I interviewed Ken and Gary for an article I wrote for Medscape on caregivers and cancer. I wanted to include a gay couple. Gary and Ken were at the top of my list.
Prostate cancer entered their lives when Mason went on Active Surveillance of low-risk prostate cancer over 13 years ago. Ken had had two other cancers and participated in early research at the National Cancer Institute on the use of MRIs in detecting prostate cancer.
Gary, whose stepfather died from prostate cancer, said, "Prostate cancer is a challenge in your relationship just as if a spouse had been diagnosed with multiple sclerosis or anything else. How do you handle that? Are you the spouse there for the rest of your life according to your vows, or are you not?"
The diagnosis of a major disease is an opportunity to take a look at the bigger picture and what kind of person you are, he said. What kind of person do you think your spouse is? And what's your relationship? "And honestly, if you're having problems dealing with their illness, I think you ought to be in therapy," Gary said.
He said doctors often don't manage prostate cancer as a "couple's disease," overlooking the impact of the cancer on the partner's life. He said partners need to be included in discussions and decisions as both partners may interpret and process differently.
He and Ken attended attended all medical visits together.
There will be a memorial for Ken soon. Details to come.
I added extra black dividers here just for Ken. RIP.
Ken, send us a shaggy dog if you can.
Miss you, dude.
Famed Sturgis Rally featuring a special ‘Prostate Cancer ride' on August 6 to ‘Kick Cancer’
Perfect timing--average rider in the US is 50--same age as when PSA screening should start.
By Howard Wolinsky
Here’s some big news for you easy riders.
The iconic 10-day Sturgis Motorcycle Rally, a cultural event for motorbike aficionados for the past 84 or 85 years—depends who you ask—is giving a major nod to prostate cancer.
This year, the nonprofit Customs Kicking Cancer will have shout-out to prostate cancer awareness and raise funds for research with a one-day ride on Aug. 6, “Chrome for a Cause.”
[“Customs” refers to motorbikes that have been customized from factory-made models. “Chrome” refers to decorative and protective layer of chromium applied to various metal parts for bikes through electroplating. It serves both aesthetic and functional purposes, enhancing a bike's appearance with a shiny, reflective finish while also providing corrosion resistance and increasing durability. No hable biker language. Thanks, AI.]
The cause is PCa. Great to have bikers on your side, right? The riders will be increasing awareness and raising funds for research.
“As someone whose father was diagnosed with prostate cancer at the young age of 56, I know firsthand that regular and early screening of prostate cancer is easy, minimally invasive, and allows for a much greater chance of a regular healthy life after this disease,” said Dan Lucas Jr., founder and president of Customs Kicking Cancer.
Bikers are legion. The number of registered motorbikes in the U.S. has doubled to 8.8 million from 2002 to 2023. The Sturgis Rally draws outlaws (the “1 percenters”), “squids” (look it up) as well as everyday folks, like doctors and lawyers, and such, dressed their leathers and special riding kits.
I haven’t been to the Rally. But I love the Black Hills and often have been heading there or back home and encountered the riders. If you spot them, give ‘em a wave.
(Custer State Park—watch out for the bison—they have the right-of-way—Howard Wolinsky.)
The Sturgis rally draws hundreds of thousands of attendees each year, making it the largest motorcycle rally in the United States and probably the world.
Prostate cancer and screening for PCa is a perfect topic for Sturgis.
Many Baby Boomers don’t give up their HOGs, Indians, BMWs, or other bikes, as they age. According to the Motorcycle Industry Council, for the first time ever, the median age of motorcycle owners in the U.S. is 50 now, compared to 27 in 1982.
50, is the same age bracket when most groups such as the American Cancer Society recommend men with no family history of PCa should start screening.
Customs Kicking Cancer says: “Rev your engines and ride with purpose! Join Customs Kicking Cancer for our signature event Chrome for a Cause taking place during the legendary Sturgis Rally. This powerful one-day ride will start and finish at the iconic Iron Horse Saloon, winding through the breathtaking Black Hills with a pack of riders united for one cause — prostate cancer awareness and early detection.”
(We need to separate the sheep from the wolves in PCa cells.)
Every participant will be entered to win either a custom Honda Grom motorcycle or a Louis Vuitton belt bag.
Registration and event details can be found here.
Do you think they should set up PSA testing at Sturgis?
If any readers will be at Sturgis, how about taking some photos of the ride with an accompanying article?
Bikers beware
Also, bikers beware: Riding your HOG, Honda, \ or any bike apparently can raise your PSA test, just like riding your bicycle does.
It’s the pressure—on your prostate, man. Any activity that puts pressure on the prostate gland can skew PSA results in the wrong direction. This includes things like riding a bicycle or motorcycle.
Advice: to help ensure accurate results, avoid biking activities of any sort for at least 48 hours before your PSA test. Same goes for sexual activity. Sorry.
Cedars in LA testing intensive treatment of high cholesterol in PCa patients to boost immune systems
By Howard Wolinsky
Epidemiologic studies have found a strong association between cholesterol-lowering therapy with statins and lower risk of death from prostate cancer.
Animal studies suggest that cholesterol-lowering can decrease the progression of prostate cancer.
Now, researchers at Cedars Sinai Medical Center in LA are studying the hypothesis in men on Active Surveillance.
If you fit the eligibility criteria and can make it to Cedars Sinai, researchers can use your help.
For more information on the study, go to these links:
—ClinicalTrials.gov: https://clinicaltrials.gov/study/NCT06437574#contacts
—Cedars-Sinai Clinical Trials Page: https://clinicaltrials.cedars-sinai.edu/view/IIT2024-01-KIM-ICL
Contact Amy Hoang, MS, at Cedars-Sinai:
amy.hoang@cshs.org
More PCa tips—I need your help
—Please respond to my confidential survey on genetic testing and PCa. At the end of July, I will be moderating a program for ASPI on the importance of genetic testing for prostate cancer patients. Click here: https://forms.gle/Uv9d5gaZYHadZ5Qh9
—Please answer this questionnaire.on transperineal vs. transrectal biopsies: https://forms.gle/GShpHwegEPtAVgTs9 I have a relevant story coming, and you can take a few minutes and help if you haven’t already.Please answer a survey on genetic testing and PCa
At the end of July, I will be moderating a program for ASPI on the importance of genetic testing for prostate cancer patients. Can you respond to this survey: https://forms.gle/Uv9d5gaZYHadZ5Qh9—Howard Wolinsky
A note from ZERO on Medicaid coverage for PCa patients
Over the past few days, there has been ferocious debate in the Senate regarding the provisions cutting Medicaid in the budget reconciliation bill (also known as the "One Big Beautiful Bill"). According to reports published over the weekend, the cuts would leave nearly 12 million Americans without healthcare, especially those in rural and underserved communities.
Cutting Medicaid coverage could lead many men to delay prostate cancer screening and limit their access to treatment once diagnosed. This delay could lead to more late-stage diagnoses, worse outcomes, and higher healthcare costs for everyone.
The final vote in the Senate is expected very soon. Please reach out to your legislators now to let them know what Medicaid means for countless prostate cancer patients.
Howard, your heartfelt obit is a gift to everyone who loved Mason (which means everyone who met him). You evoke him so well here.
Thanks, Ben. I think you ought write something in your blog AND share this: https://howardwolinsky.substack.com/p/famed-sturgis-rally-stands-up-for
Howard.