“Many years ago, when I was facing similar realities, a very wise and understanding voice in cancer sat me down and said, “Hope shifts in cancer.” In the beginning, we are optimistic that our loved one will respond to treatment, and our HOPE is high….as some treatments work and then they don’t, our HOPE shifts to understanding what the outcome might be….and then as the cancer moves to overcome any possible response, HOPE shifts again..this time to comfort and peace for our loved one.”
–Laurie Singer (Care Partner & Pancreatic Cancer Support Group Moderator)
It’s always incredibly difficult to say goodbye to members of our AnCan community, as each person—whether a patient, survivor, carepartner, volunteer, moderator, or a board or advisory board member—means so much to us. We are deeply saddened by the passing of Ken Mason, who was one of those cherished individuals.
A true friend, Ken lived his life with an infectious zest that inspired everyone around him. His laughter was a melody that brightened the darkest days, and his kindness knew no bounds. Whether he was sharing a clever (or terrible) joke, offering a shoulder to lean on, or simply lending an attentive ear, Ken made everyone feel valued and loved. His sincerity was a rare gem, shining brightly through his genuine interactions with friends and strangers alike. A man of both humor and heart, Ken’s legacy will continue to touch lives and bring smiles for generations to come.
AnCan Founder Rick Davis said:
I loved this man.
News of Ken’s demise was just like one of his crummy jokes – no one wanted to hear it.
Ken cared so much for others. Gary described his beloved as ’empathy, silliness and love’ exuding ‘kindness’. I might add to those qualities his quick wit and sense of humor. I feel honored to have been frequently on the receiving end of Ricklesian insults.
I had the privilege of supporting Ken virtually from around 2013 onwards through his four cancers. While all relatively benign, Ken shouldered the anxiety like the trooper (or MP??) he always was. Whatever bothered Mason was never the cancer.
Mason, as he self identified, was a treasured moderator for our AnCan virtual support groups. He always empathized. If a pressing issue was not voiced, Ken surfaced and addressed it. Every Group he attended is grieving.
I will forever miss Ken’s homespun, invariably impractical advice offered with the very best of intentions. I became expert in dismissing them without offending him, and was comforted when I read he offered comparable suggestions to Howard Wolinsky.
We had the privilege of meeting several times, the first with Gary when they came to dinner. It’s timely that I recently opened the balsamic you both gave me. Ken, G-d Rest His Soul, lived so 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.
Myself as well as all who knew Mason at AnCan offer Gary and Family much comfort. For us and all who knew Ken, his memory will always be a blessing.
I loved Ken—most in the PCa world called him “Mason”—like a brother. We all did.
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.
Ken wanted to be called Mason because as he stated he “was in witness protection (he was not) with warrants (false)” and the only way he was able to participate was to “use an alias”. While his husband Gary described him beautifully as ‘the purest, kindest soul I know’—full of empathy, silliness, and love—Ken also had a wonderful knack for delightful ‘BS,’ which, frankly, only made us love him even more.
We shared memories of Ken with Gary during the first part of our Active Surveillance meeting. If you did not get the privilege to meet Ken, we encourage you to listen to stories and some of his classic “Ken Jokes”
A Celebration of Life will be held on Sunday, October 26th, 2- 5pm at Barred Owl at the Scarlet Hotel, 2101 Transformation Dr 6th Floor,, Lincoln, NE 68508. The event will be streamed virtually – AnCan will provide details. Bring your worst jokes.
Thank you Ken for all the time you graciously shared, the love, support, and the laughs. May his memory always be a blessing!
Tomorrow is the 10th Anniversary of my dear friend, Jerry Carniglia’s passing, God Rest His Soul.
I loved this man. I found him in 2011, when my buddy Eric Schmier GRHS/z”l asked me to navigate him. That’s the same Schmier after whom we named one of our Virtual Room when his family made a very generous donation early in AnCan’s history. Jerry had been diagnosed with denovo metastatic prostate cancer and was being treated inadequately at Kaiser Permanente in Oakland, CA.
Eric was a developer in Emeryville, Caifornia, and Jerry was the ‘unofficial’ Mayor. Everybody knew him – he lived in a disused 6,000 s.f. factory turned into his living space and studio. Jerry was a general contractor, artisan woodworker with an enormous, fully equipped workshop, an artist of very large (& small) canvasses, and not least an actor. Jerry’s closest buddy from drama school at UC Berkeley school was Tony award winner, Tony Taccone, Artisitic Director at Berkeley Rep. You may be familiar with Tony’s son and Jerry’s Godson, Jorma Taccone of Lonely Island and Saturday Night Live fame (Dick in the Box).
Jerry was diagnosed with denovo metastatic prostate cancer in 2011, and we transferred his care from KP to UCSF as soon as we could under the amazing, watchful eye of Dr. Larry Fong. Larry is the Principle Investigator for Provenge and a highly respected GU medical oncologist. Jer’s prognosis was not great and we got him around 4 years.
This picture was taken on Halloween 2012 on the occasion of Jerry receiving his 3rd Provenge infusion!
Amongst other pre-‘AnCan’ directed navigation, Jerry was the first Veteran I supported. When I discovered he’d served on a Blue Water craft in the Mekong Delta. we got him over $4 Grand a month! And it was through Jerry that AnCan found our Care Partner Lead Susan Lahaie, and her late husband, Ron Silverio.
Jerry decided he wanted to document his last years. He bought a fancy camera, the softtware program First Cut that he taught himself, and started making videos. It did not hurt that he had many connections to assist him with video, audio, editing and production. In Jerry’s dear memory, I want to bring several videos to your attention that are now lodged on You Tube. You’ll find me reluctanty appearing in two of them!
Jerry Carniglia, Painter is a short video displaying his remarkable technique. I suspect, although I’m not certain, this canvas may be one of the 3 Carnigloa paintings I have hanging in my casita. Much of his work was donated to UCSF and to Larry Fong personally. He is collectable and had several shows.
Jerry Cut 3 – is an edited collage of several clips Jerry made in his own memory. He intended them to be watched as you are doing today This is Jer!!
Painting A Quiet Radical, a 5 min short, is scripted and acted by Jerry and friends who also lived with advanced prostate cancer. Other than myself, the other’s are no longer with us. His Tony award winning director friend, Tony Taccone refused to have any part of this, then showed up at the read-through and directed the whole 9-yards!
Signs is the re-enactment of a true event when Jerry went for an evening stroll along the railroad tracks close to his factory, He tripped, fell, knocked himself out and almost got run over by a train. I tracked him down several days later in the hospital. A few months later Jerry called me up one Monday morning in the Fall and told me to come by that afternoon. We were filming! I asked what – and where’s the script. He said – “Just show up wearing shorts and sandals. You don’t need a script!” Gotta love this man.
This post is a tribute to Jerry Lee Carniglia. He died on June 7, 2015 – may his memory always be a blessing. It will to me.
“Someone I once loved gave me a box of darkness” –Mary Oliver
I was at a 12-Step-oriented workshop about grief recently, and it made me think about Men Speaking Freely (MSF). We are vaguely aware of grief in all MSF groups, it hangs over us, and we have at times focused on some specific griefs/losses, such as vitality, or a longer life. It is commonly thought that not thinking about a loss, not talking about it is the manly thing to do. Here in MSF we get relief by sharing our common losses with each other.
The presenter of that workshop, Marcia C., had some ways to specifically talk about grief that were new to me. She gave me permission to use some of her material here. She pointed out some types of losses that I hadn’t realized. For example, the loss of who I would have been if cancer didn’t happen, the grief of estrangement, loss of work, of status, of friendship; the loss of never having had something, that of aging, of trust, or of giving up something.
She said there is “unacknowledged grief” when such losses are never fully brought to consciousness. When I looked at her long list of examples I saw many that I have. We ought to watch for unacknowledged grief.
She described “non-finite” grief, which has no end-point other than death. Ours could be in that category, since as time goes by our loss increases instead of lessens.
Marcia said, ‘’Sharing your grief is a way to receive validation and compassionate witnessing. It can help you begin a path to healing and/or finding a way to live with grief.
Consider the questions below:
1. Are there griefs you haven’t realized you have or have been afraid to face?
2. Are there griefs about which you’d like to share?
3. Do you have grief practices that might be helpful to others?
4. Make a list of griefs you’ve experienced.
5. Choose a tool from the list that might help you process your grief.”
That list of “tools” was long; it included things like: write a letter or poem describing our loss…Create a ritual of letting go…Share with others who have had similar losses…Visit a place that is meaningful…Make or buy a talisman that helps you feel protected…Dance, run, yell to get your feelings out of your body…Plant something in remembrance or as a new beginning…Start a new tradition…Do an intentional funeral… These are ways to bring acknowledged, unacknowledged, and non-finite grief out for a conscious conversation. Moving from covert to overt, with the goal of making a relationship with the loss, and getting rid of the unconscious silent prolonged scream that I, for example, think I harbor.
We think of grief as emotional, but in “Dealing With the Physical Impact of Intense Grief” by Batya Swift Yasgur, the author describes the variety of physical reactions to grief. Ranging from elevated blood pressure to takotsubo cardiomyopathy — sometimes called “broken heart syndrome” — which is a “stress response that balloons the heart.” We often wonder about the reaction on our immune system, and its implications to our overall survival. In fact, probably nearly all our systems react to grief in some way.
There is a fairly new grief-related diagnosis in the Diagnostic and Statistical Manual and the International Classification of Diseases, describing a “persistent and pervasive grief response” that goes on longer than a year., and is now called Prolonged Grief Disorder. In order to be diagnosed with Prolonged Grief Disorder, a person must experience at least three of eight additional symptoms that include “disbelief, intense emotional pain, feeling of identity confusion, avoidance of reminders of the loss, feelings of numbness, intense loneliness, meaninglessness, or difficulty engaging in ongoing life” according to Columbia University’s Center for Prolonged Grief. For an adult to meet the criteria for a PGD diagnosis, the death of a loved one must have occurred at least one year ago, and the symptoms must be present most days since the loss and nearly every day for at least the last month.
Our situation is different from losing a loved one (although it includes that) and waiting for the grief to go away. Instead of a major loss which goes farther and farther into the past, our major loss is in the future. We have sort of a reverse Prolonged Grief Disorder. For instance, I expect my losses to get worse and worse until death.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 17, 2025
(Apologies for late posting… still catching up from GU ASCO25: rd)
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostic.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
All AnCan’s groups are free and drop-in … join us in person sometime!
Catch weaver, Jose Picayo speaking to AnCan’s Hannah Garrison in Solo Arts Heal about how his weaving has helped him and others heal. Next Wed, Feb 26th at 7.30 pm PACIFIC https://themarsh.org/soloartsheal
Editor’s Pick: Listen to Al L’s 30 yr survival story with a G5+4 (rd)
Topics Discussed
starting on Pluvicto; can a ctDNA test reveal disease – and how do you get it?; photon =proton; can you biopsy a rib – generally not; debulking the primary with radiation; spot RT to T10; do you have to give up alcohol on abi?; good small cell NE like markers.; 30 yr. 5+4 survivor tells his story!
Chat Log
Al L sent: 6:16 PM
biotene
AnCan – rick sent: 6:20 PM
Heh Gents… just back from SF – literally
Len Sierra sent: 6:20 PM Welcome back, Rick!
Jim Marshall, Alexandria, VA sent: 6:33 PM Internet connect tonight is BAD!!!! Will catch all on the recording
Steve L sent: 6:34 PM Compassionate Care Program If a patient is uninsured or is concerned about their ability to pay for Natera genetic testing, they can contact us at Tel:+1.650.489.9050 option 2 | oncologybilling@natera.com
Joel Blanchette, Reston, VA sent: 6:43 PM Try unplugging your headphones
Wes – San Diego sent: 6:44 PM Sorry, yes. Looks good now; question of if there is anything I do to rule out the rib, after an xray was not definitive in identifying an old break.
AnCan – rick sent: 6:57 PM FDG PET scan, Axumin scan
Steve L sent: 7:14 PM I understand that Abiraterone isn’t Chemo, however mine arrives in a bag labeled ” chemotherapy drug ”
Wes – San Diego sent: 7:25 PM No, if a drug is not on a formulary, then deduction does not apply.
Wes – San Diego sent: 7:26 PM I found Blue Cross honors my 3 expensive drugs; medicare B does not.
Dr. Jeff sent: 7:26 PM https://pmc.ncbi.nlm.nih.gov/articles/PMC11116681/ At times rib biopsy can be performed. (Ed: This citation is grossly misleading and should not be considered evidence that a rib Bx is possible in a fragile location: rd)
Len Sierra sent: 7:27 PM Medicare B does not cover any drugs
Wes – San Diego sent: 7:27 PM True, so it would be me adding B, D.
George Wesoloski sent: 7:29 PM My Alt & AST are three times normal. Believe it is due to the Rheumatoid Arthritis drugs, Methotrexate & Arava. Developed a serious body itch & now on Claritin and Zantac for the itch & ceased the Arthritis drugs. Waiting for another blood test in a month.
AnCan – rick sent: 7:30 PM As I said Dr. Jeff – anecdotally most docs will NOT biopsy a rib spot. Especially if it is round the front. It depends where the spot is. You posted a case study, so that is also anecdotal.
Len Sierra sent: 7:40 PM Neuroendocrine biomarkers: Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, synaptophysin positive. DLL3 (Delta-like Ligand 3) is positive in 76% of NEPC.