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!
Taking on the role of a care partner can feel overwhelming, but you don’t have to navigate it alone. Many experienced care partners will tell you that with a little guidance, it can also be a deeply fulfilling experience. To help you on your journey, we’ve compiled some helpful resources available online.
1.Leaning Into Grief: An Interview With Claire Bidwell Smith
Claire Bidwell Smith is a therapist, grief expert, and author. Click here for her interview about leaning into grief.
2. Cancer Today: Addressing Anger
Anger and Irritability are normal responses to a cancer diagnosis, and this article offers guidance for care partners of cancer patients.
3. NCCN Guidelines for Patients: Palliative Care
The National Comprehensive Cancer Network released an easy to read, patient-centric Palliative Care guidelines that you can view and download. Click here.
4. “Caregiver Life Hacks”
There’s no one-size-fits-all way to care for someone because every care partner and situation is different. What helps one person might not work for another, but many care partners deal with similar challenges. Click here for some simple “life hacks” that might make your day a little easier.
5. “Caregivers Need Care Too”
“However, primary care partners are also thrust into an unfamiliar world of medical treatments, terminology, and appointments. This is why mutual support between the patient and the primary care partner is important—it is a partnership through thick and thin because both the patient and primary care partner need to learn about the complexities of the disease and treatments needed, as well as make important decisions together.” Click here for the full article.
6. Triage Health Caregiver Resources
Click here for a full list of resources about legal and practical matters like taking time off from work, managing family finances and medical bills, replacing lost wages, estate planning, and other resources.
7. Cancer Straight Talk Podcast: Advice and Support for Cancer Caregivers
The podcast Cancer Straight Talk features host Dr. Diane Reidy-Lagunes speaking with Dr. Allison Applebaum, the founder of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center (MSK). This episode covers navigating the healthcare system and managing the emotions of caregiving.
8. Patient Power: Power of Care Partners: Who Has your Back?
This article is about the crucial role of care partners for people with chronic illness. It distinguishes a “care partner” as a full member of the care team, not just a caregiver. The article also provides advice on practical matters, like having a designated care partner with access to medical records, and emphasizes the importance of care partners looking after their own well-being.
AnCan Foundation is immensely proud that Delaware has joined a growing number of states committed to empowering individuals at the end of life. The Ron Silverio/Heather Block End of Life Options Acthas officially become law, making Delaware the 12th jurisdiction in the U.S. to authorize medical aid in dying. Ron Silverio GRHS wife, Susan Lahaie is AnCan’s own Lead Moderator for our Care Partner Group, and a long time AnCan participant in the Advanced Prostate Cancer Group and Veterans programming.
1943 – 2018
This is a monumental achievement, born from years of dedicated advocacy and the unwavering courage of those who fought for the right to a peaceful, dignified death.
For too long, terminally ill Delawareans facing unbearable suffering had limited options. This new law changes that, offering a compassionate choice to mentally capable adults with a terminal illness and a prognosis of six months or less to live. They will now have the option to request and self-administer medication to end their lives peacefully, on their own terms, surrounded by loved ones.
Honoring the Legacy of Advocates, and a Tireless Champion
The act is rightfully named in honor of Ron Silverio and Heather Block, whose deeply personal journeys became a powerful force for change. Their stories, alongside those of Tom LaFollette, Chuck Knothe, Diane Kraus, and countless other terminally ill advocates, fueled a decade-long fight for this legislation. See and hear Ron speaking about innovating this legislation shortly before he died. In his own words:
“Along my journey, I have consistently told my multiple doctors I want to focus on the quality of my remaining days, not the quantity. I don’t want to die in a bed, unconscious and unresponsive under the influence of drugs, completely unaware of my surroundings. From the very beginning of this journey I have been worried about how I will die.”
Susan Lahaie, Ron Silverio’s wife, has been a truly remarkable advocate. A retired nurse practitioner and USAF Lt. Colonel from Dover, Susan has tirelessly continued her work in Ron’s honor since his passing in 2018. Her personal experience with Ron’s challenging end of life strengthened her commitment to ensuring others would have the choices he didn’t. At the signing ceremony, Susan expressed her family’s deep pride in the bill being partly named for Ron. She noted, “Ron would have said that terminally ill people of Delaware can now focus on living without having to worry so much about how they were going to die.” We were honored to support Ron and Susan throughout his prostate cancer journey here at AnCan.
Photo Credit: Spotlight Delaware – Brianna Hill
Susan’s tireless work on this groundbreaking legislation is nothing short of remarkable. She’s advocated relentlessly since her husband, Ron Silverio, passed away in 2018. Ron’s difficult end-of-life experience fueled Susan’s resolve to ensure others
would have the choices and dignity he deserved but lacked. Her personal journey transformed into powerful public advocacy, making a profound impact. Susan’s commitment to supporting those facing serious illness extends beyond legislative advocacy. She generously dedicates her time with AnCan, helping us provide vital virtual support groups for cancer carepartners. Her involvement with AnCan truly underscores her understanding of the comprehensive needs of individuals and families at every stage of their health journey—from critical end-of-life choices to the ongoing emotional and practical support that makes a real difference.
We’re honored to have Susan Lahaie as part of the AnCan family, and we congratulate her, and all the advocates, on this monumental achievement for compassionate care in Delaware.
AnCan, is proud to announce that two of its dedicated patient advocates have been named to the esteemed Cancer Health 25 list. This annual recognition by Cancer Health magazine salutes outstanding individuals who are making a profound difference in the lives of those affected by cancer.
The Cancer Health 25 list highlights the unwavering efforts of patient advocates who bridge critical gaps in cancer care, providing essential support, education, and resources. As the article states, “No one should face cancer alone. Luckily, a vast range of skilled and dedicated patient advocates can provide support to people with cancer and their loved ones.” The list acknowledges individuals who raise funds and awareness, build programs, share information, facilitate access to care, and much more, especially for vulnerable and underserved communities.
We are incredibly honored to see two of our own advocates recognized among such an inspiring group of individuals. This recognition underscores the vital role that patient advocates play in ensuring that no one walks their cancer journey alone. Our advocates tirelessly embody Dr. Harold P. Freeman’s vision of filling the ‘disconnect between what we discover and what we deliver’ in cancer care. We are immensely proud of their dedication and the profound impact they have every day.
Ritchie Johnson
Among those recognized is Ritchie Johnson, MBA, RN, founder of the Chris “CJ” Johnson Foundation and co-founder of AnCan’s Renal Medullary Carcinoma (RMC) virtual support group. Ritchie launched the Chris “CJ” Johnson Foundation in memory of her son, who died of RMC, a rare and aggressive type of kidney cancer primarily affecting young African Americans with sickle cell trait. A relentless advocate, Johnson has tirelessly pushed for increased RMC awareness, funding, and scientific attention, which has led to the formation of multiple clinical trials.
Howard Wolinsky
Also honored is Howard Wolinsky, a Pulitzer Prize–nominated medical journalist and a prominent advocate for active surveillance in prostate cancer. Diagnosed with low-risk prostate cancer at 63, he chose active surveillance over immediate treatment 15 years ago and has not yet required intervention. He passionately supports others navigating similar decisions, co-authoring dozens of articles in medical journals with physician-scientists. He is the editor of TheActiveSurveillor.com and is a co-founder of our Active Surveillance Prostate Cancer Group.
Our mission is rooted in the belief that shared experiences and peer support are fundamental to navigating a cancer diagnosis. The organization’s advocates work diligently to connect patients and caregivers, provide trusted information, and foster a strong, supportive community. Their inclusion in the Cancer Health 25 is a testament to their commitment and the effectiveness of AnCan’s patient-centric approach.
AnCan extends its deepest gratitude to Cancer Health for shining a light on the invaluable contributions of patient advocates and for recognizing the tireless efforts of its team members.
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.
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.
Advisory Board Member Howard Wolinsky shares:
would have the choices and dignity he deserved but lacked. Her personal journey transformed into powerful public advocacy, making a profound impact. Susan’s commitment to supporting those facing serious illness extends beyond legislative advocacy. She generously dedicates her time with AnCan, helping us provide vital virtual support groups for 
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.
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.