Bang your drum… it could make you smarter and healthier!
I don’t want to work I want to bang on the drum all day I don’t want to play I just want to bang on the drum all day
–Todd Rundgren
Twice in the last several months, the topic of drumming came up in our AnCan Men Speaking Freely group and it generated some excitement both times. So this month’s invite will be on that topic.In my former practice whenever I have given a non-verbal treatment there is a big relief that no talking is involved. In bypassing the verbal and left-brain systems we gain access to a typically unused part of ourselves. I wonder if we can use this approach to cope with our serious illnesses and have a better life?
Our brains have a characteristic called plasticity, the ability to change. You may have heard of this regarding the little finger brain circuit of violinists; it grows as they become proficient. Drummers also have different brains than the rest of us. They have fewer, thicker nerve fibers between the two halves of the brain. They have more efficiently organized motor cortices. (Schlaffke, 2019). Because of this, drummers can do things that we can’t. They can coordinate the two sides of the brain better, and perform motor tasks with greater efficiency. They can play different rhythms with each hand and foot at the same time.
Schlaffke’s subjects had drummed many hours per week for decades. But Bruchhage’s (2020) subjects trained for only 8 weeks and showed several changes in the cerebellum plus changes in the cortex, showing not only cerebellar plasticity but also communication and coordination between the cerebellum and brain sensorimotor areas as well as areas for cognitive control.
Drumming is very complicated, which is why it’s unfair that the lead guitar and vocal guy gets all the girls (Greenfield, J. 2022).
For some reason, there is a close association between beat synchronization (integrating auditory perception with motor activity) and reading ability in children (Bonacina, 2021). Higher synchronization ability predicts better literacy skills. Maybe early intervention involving drumming can improve literacy in kids?
Cahart et.al (2022) showed that drumming can improve behavioral outcomes for autistic adolescents and elucidated some of the neurology involved. Does this mean it could help us?
Drums have been used for millennia for healing, inducing trance, and even psyching up soldiers.
We have learned that drumming is not just about waking up the right brain, but also about connecting the sides of the brain, and the cerebellum with the cortex. It can induce alpha brain waves. It can release endorphins. Even T-cells respond to drumming (Bittman). It induces present-moment experience, which we often work toward to deal with death anxiety. Interpersonal connections are made when people drum together. Despite the effort involved, it induces relaxation. I have come across papers describing drumming and music therapy for a wide variety of emotional problems and currently, there are 8000 music therapists in the US.
How about for us? We see above the possibility of reductions in anxiety, tension, pain, isolation, depression, and over-thinking the past and future. There are many studies of music therapy in ICUs, with patients on ventilators, easing hemodialysis pain, with positive results. Also, helpful with narcotic use, social integration, and depression. MSKCC uses music therapy.
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
Well, all this scholarly stuff is really unnecessary to anyone who ever banged a pot with a wooden spoon. Kids love it. Adults love situations where it’s OK to be wild and make noise, such as drumming circles and Pound classes. It’s just fun and feels good.
Dr. John Antonucci
Editor: Dr. John wrote this for our Men Speaking Freely Reminder on Dec 7, 2023. It’s such a perceptive, helpful and instructive piece, AnCan wanted to share it widely.
I am writing with a very heavy heart to report the death of our dear Board Member, Advisory Board Member, Moderator, Participant and my good buddy, Herb Geller PhD G-d Rest His Soul.
The loss of dear Herb z”l is already reverberating around AnCan and will undoubtedly amplify as more learn of his demise. Herb touched many well beyond his Advanced Prostate Cancer ‘Brains Trust’, Moderators, Peers and Participants. The Blood Cancer group got to know him well when he attended regularly on behalf of his brother. The Pancreatic Cancer folks met him when he showed up for his next door neighbor. Our Men Speaking Freely Group loved and respected him for sharing his fears and concerns. Members of our Advisory Board got to interact with Herb as did Medical Academics and others who participated in AnCan’s research projects.
Here are a few of the words I already see bandied around –
“kind, smart, caring, thoughtful”
“My heart is heavy and I’m at a loss for words. There is something I’m feeling that I can’t express sufficiently”
“this is the deepest hurt since we lost Dominic (2015)”
“Thanks to each of you for your loving support of him and all of us for each other.”
Herb passed away from advanced prostate cancer that had evidently morphed into small cell/neuroendocrine like (NEC) disease. A late diagnosis just one day before he entered the NIH, his place of work, identified this. Herb was scheduled to undergo tests for his highly elevated endocrine markers, however the source was now evident on admission. The NIH never appeared to acknowledge or treat him for this diagnosis. It finally added a neuroendocrine oncologist to Herb’s team after 21 days after repeated AnCan prodding from the date of admission. Herb underwent research procedures related to Cushing’s Disease and its symptoms. In due course, AnCan will follow up as appropriate.
Never one to give up the opportunity to sail anything from a small dinghy to an ocean-going yacht, Dr. Herb Geller was a nationally recognized expert in neuro-biology; a profile is available on the NIH site. Herbie loved a a good Scotch, in Skye or anywhere else. On his request, AnCan did its best to sneak in a wee dram just to wet his lip in the final days but the ‘powers that be’ prevented us. I’ll have one for you tonight, Herb! And, we’ll make sure both your AnCan posters get written up for submission with credit to you.
Herb is survived by his wife of 55 years, Nancy, Director of the Office of Biostatistics for the National Heart, Lung and Blood Institute at the NIH. Also his younger brother, Ken, an eminent Supreme Court Advocate kennethsgeller@gmail.com. We wish Herb’s family and many friends, especially his “AnCan Family”, much comfort. May Herb’s memory always be a blessing – it certainly will be here at AnCan.
For our Jewish readers, Herb’s z”l Hebrew name is Chanan Moshe ben Aaron v’Sara; he died on 25th Nisan.
Some 200 folks gathered together last Friday, June 24 at the Cold Spring Baptist Church in Mechanicsville, Virginia. to celebrate the life of our dear Advisory Board Member, Jerry Deans, Of Blessed Memory. I was honored to present one of the three tributes … and no surprise, we all said the same thing in different words.
Jerry loved life
Jerry loved to spread love
Jerry lived for the moment
Let’s be honest … there are few, if any, who would not want to be remembered for such wonderful and embracing atttributes. We loved Jerry becasue Jerry loved everyone!
Here first are my words, followed by those of Jim Schraidt that I read on his behalf. Alongside Jim’s eulogy, you see a picture in the church displayed on a carousel showing Jerry and Jim touching hands on their bucket list diving trip to Key Largo 12 months ago together with the original a little further down.
“This disease, (prostate cancer) as well as all cancers, thrusts people into the ‘Belly of the Beast.’ You have to experience it yourselves to know how devastating it can be. But there is help and hope. No matter what you are battling, there are people who have dedicated their lives to help improve yours.”
Not my words … I wish I was so eloquent. These are our beloved Jerry’s words. Mr. Deans was one of those immensely compassionate folks who dedicated his life to helping improve the lives of others who found themselves on the same road he was traveling – whether the loss of a loved one, cancer, or frankly any life experience, Jerry was there to help and support.
Jerry had lived with prostate cancer since 1999, aged 50. Unlike most of you sitting here, I came to know Jerry through prostate cancer. When prostate cancer came into my world it was both a curse and a blessing – Jerry was one of the biggest factors that made it a blessing.
It is also the reason I stand here before you all today. Likely, the majority of you know little about Jerry’s prostate cancer life. Patsi asked if I could do my best in 5 minutes or so to correct that, and it is my privilege to assume that honour. I can’t really even begin without paying tribute to Patsi’s role in how Jerry navigated this 23-year disease path.
As evident in all aspects of their marriage, Patsi was Jerry’s rock and support along with his faith. From keeping him on the right track with exercise and diet, to helping maintain his medical records – especially in recent months, attending appointments, providing continuous nurture, maintaining the household through emotional swings caused by the never-ending hormone therapy …. and what does that mean – living life for the past 20 odd years with no testosterone in your body. Yup Gents – you heard right!!
No T messes you up good! All those symptoms you hear the wife complaining about when she hits menopause – hot flushes, fatigue, brain fog, weight gain, emotional instability. Our men complain of the very same! All down to zippo testosterone each and every day. Who knew?? Well Patsi did, and she was one of the biggest reasons Jerry weathered the storm better than almost anyone else we have ever know living with advanced prostate cancer.
Jerry was truly amazing …. As far back as 2006, he was found to have metastatic lung nodules. These nodules were a bit like a spiritual epiphany … REALLY. They would repeatedly appear and disappear over many years, but we knew that they were prostate cancer cells in Jerry’s lungs. NO ONE LIVES 16 YEARS WITH LUNG METS.
And some of you may recall Jerry knocking off a bucket list item this time last year. He and our good buddy Jim Schraidt went diving in Key Largo. What you may not have known is that Jerry was already having some cognition issues. Why? …. brain mets!! NO ONE LIVES 15+ MONTHS WITH PROSTATE CANCER BRAIN METS. Even his neurosurgeon told him that.
In fact, Jerry continued to defy medical science for 23 years., He experienced almost every prostate cancer treatment known to man and his disappointment was that there was no more to roll out … but more of that later.
Jerry was always immensely grateful to his medical team – as I reflect, I don’t ever recall him badmouthing his docs …ever! More often he was calling to tell me how graciously and compassionately they had received him! That reflected Our Man!
Right now, I want you to hear directly from Jim Schraidt in Jim’s own words – the dear friend with whom Jerry went o Key Largo last year. Jim cannot be with us today as his wife Jane is undergoing cataract surgery in Chicago, but as they say – this message is endorsed by all Jerry’s UsTOO colleagues. UsTOO, btw, is no more and has been merged into ZERO; Jim now sits on their Board.
Jim Schraidt’s tribute below inserted here.
To borrow a term from one of our Pfizer colleagues, Jerry was a LEGEND of support for prostate cancer patients. Somewhere around 2006, Jerry started attending Peter Moon’s UsTOO Support Group here in Richmond. Peter – I feel sure you are here – please stand up.
Peter was one of the very few local folks who knew and understood Jerry’s condition. He has been a member of Jerry’s inner support circle longer than anyone except Patsi. Meanwhile, Jerry loved what UsTOO was doing and before very long he was offered a seat on the UsTOO Board where he could evangelize for support in the same way he evangelized for his faith. Indeed, he was a legend, and under his navigation UsTOO expanded and grew its loose network of physical, mainly peer-led support groups across the nation and the globe.
By the mid 20-teens, Jerry was Vice Chair and ready to step into the chair when his advanced prostate cancer made him think twice about assuming those responsibilities. Instead he took to the sidelines to support, coach and guide from the wings.
It was around 2014 that I came to meet Jerry. We knew of each other – I had been a bit of a rebel when it came to UsTOO as we engineered a scheme to replace the ineffective Chief Exec. Nonetheless, in 2014 the Board voted to give me and one of my accomplices-in-crime, dear Dominic Marrese Of Blessed Memory , national recognition awards. In my case it was for the work I was doing virtually in prostate cancer support. I continue to be active in virtual patient support for several diseases and conditions through AnCan Foundation. Jerry became a member of our Advisory Board when he stepped down from UsTOO in 2018, 2 years after we formed AnCan.
Jerry was a true confidant and advisor, both on personal and AnCan issues. I sought Jerry’s counsel when I was in a pickle, listened carefully and closely to his words of wisdom and heeded them. He was never afraid to tell me I stepped over the mark or should back off … and frankly, I can’t ever remember doing anything against his advice. Jerry guided me with great care and compassion; I will always hear him in my inner ear as I continue to ask for guidance.
Personally, it was an immense privilege to navigate Jerry through the recent maze of prostate cancer approvals and developments. And while the grief and bereavement support group that he led in Richmond, often coincided with our meetings, whenever Jerry attended our Advanced PCa virtual group, he was a rock star. None the least, when Jerry joined from his hospital bed a couple of months back to show us his battle scar from removing the brain mets.
It was ALWAYS an honor to explain developments. I navigated and guided Jerry on his medical journey as we developed the questions for him to ask at his upcoming appointments. He was fearless …. and always wanted to do more. right before entering hospice Jerry was still asking Patsi what else we could do …. what a surprise!!
“Not Today”
I can truly say in Jerry’s case it was never out of fear of death but love of his family, friends, church, colleagues, mentees … in fact humanity in general. He wanted to be around to do more good and spread more love.
Jerry was a man of great faith … not my Jewish faith, but he respected that in his conversations with me which I always appreciated. We all hope that faith is rewarding him now. All of us have lost a true friend and an immense human being …. may you all receive much comfort as the pain of recalling Jerry subsides, and may Jerry’s memory always be a true blessing.
Let me close as I started … with Jerry’s own words ….
“One of these days this cancer might get me, but it might not be today and probably not tomorrow. Since it is NOT THIS DAY … Today we fight, and live and love and do everything we can to help others along the way. “
Onward & upwards …
Jim Schraidt’s Eulogy
I first met Jerry when I was appointed to the Us TOO International Board of Directors in 2015, but I really got to know Jerry better when we both were selected to attend a week-long retreat for non-profit leaders in San Francisco in 2017.
It was there that we spent hours talking about our dreams for the prostate cancer community and our personal journeys with prostate cancer. Although our journeys have been very different, Jerry was always interested in and respectful of my issues. He truly helped me in my journey and in turning my negative emotions into positive energy and concrete plans for supporting and advocating for the prostate cancer community.
During the retreat, I was amazed by Jerry’s ability to communicate with and support all of the other participants, most of whom were women. His extraordinary communication skills came from a sincere interest in the people around him, his ability and willingness to listen, and his positive non-judgmental and hope-filled approach to life and problem solving. He has spent countless hours using those skills for the benefit of the prostate community.
On a more personal note, last June, Jerry graciously invited me to join his bucket list diving trip. My son Brian had died about three weeks earlier, and Jerry knew that Brian and I loved diving together. Besides rejoicing with Jerry as he fulfilled this bucket list wish, he and Patsi helped me cope with my grief and remember good times with Brian.
Jerry, I miss you brother, but I know you will always be with me.
By the way, I was not the only AnCan’r present. Super-Volunteer aand Moderator Rich (and Brenda) Jackson drove up 100 miles from Norfolk, Va to keep me company. I was very grateful to see a familiar face. Boardie and Moderator,Herb Geller would have been present too, but was sailing in Scotland.
Onward & upwards, Jerry … your memory will forever be a blessing to all of us.
Non-Medical switching ….. know what we’re talking about?
In the patient advocacy world, Non-Medical Switching has been a major topic this year.
Non-Medical switching happens when the insurance provider forces a switch to an alternate medication, usually less expensive, to the one your health care provider prescribed. In certain HMO’s, it may actually be your HCP who switches or prescribes a less than optimal drug. AnCan sees this frequently with Kaiser Permanente.
The switched medication frequently may not work as well. For some conditions that can be devastating … for example with mood stabilizers prescribed for mental health care. A recent survey by the Alliance for Mental Heath Care Access (AMHCA) showed that 40% of patients taking medication to maintain stable mental health did worse when switched. Consequnces can be tragic.
In March, I was in Washinton DC to lobby for the American Urology Association. Switching was one of our talking points with Federal legislators. AnCan also partners with the Alliance for Patient Access (AfPA), a parent organization to AMHCA. With Mental Health Awareness Month coming up, they have just published an attention-grabbing report addressing medcial switching. Read it at https://instituteforpatientaccess.org/non-medical-switching-pushes-patients-to-the-brink/
AnCan continues to advocate on behalf of all our patients. We take Mental Health programming very seriously and now offer 5 related programs:
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 2, 2022
Apologies for the bad link to our Elizabeth Jameson Solo Arts Heal interview. The Marsh pulled the recording to edit it – find it now at https://www.youtube.com/watch?v=D4n2a… Don’t tell Jimmy G or Elliott, but this could be the best yet! She’s an inspiration …
If you’re a Vet and want to be notified when our new Vets Group starts, please let Joe Gallo know at joeg@ancan.org. Right now we are probably going out to the public on June 23; May will be a practice session.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about this and our other 11 monthly prostate cancer groups at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: How do we relate to our prostate cancer? And we back-end a VERY young denovo Mx newbie (rd)
Topics Discussed
Denovo oligoMx gent; group’s take on Covid immunizations; darolutamide fatigue … maybe?; exercise fights HT side effects; PSA creeping on IHT; how do you relate to your PCa??; AnCan’s Speaking Freely; brief snippets – true or false?; chemo plateaus PSA around 17; for Locometz seek Lutathera sites; are v. small changes in insignificant PSA a concern; Pluvicto shortages; 43 yrs old w. denovo Mx.
Jeff Marchi, San Francisco (to Everyone): 3:39 PM: when you sign up with Promise your sample is processed by Color and their genetic counselors talk with you about results. if you have future issues they will work with you.
Thomas Jacobsen (to Everyone): 3:42 PM: Dropping off now. Thanks everyone for your comments. – Tom
MIke Yancey (to Everyone): 3:59 PM: Gotta drop early. Be on next weeks meeting.
Some may have read the excellent ediorial written by Moderator Ben Nathanson in a recent High Risk/Recurrent/Advanced Prostate Cancer Reminder. Ben explains ‘time toxicity’ … a concept that effects many living with serious disease. If you missed his musings, here they are again:
Treatment that gives us time to live demands time in return. It drags with it scans, blood work, drives to the hospital, doctors running late, computers down, battles with insurance. Part of our gained lifetime is lost in dead time. Toxicity is always in the cancer mix. Financial toxicity has become part of the conversation alongside physiological toxicity, and time toxicity — time lost in an effort to gain time — is joining it. In a thoughtful 2018 essay, physician Karen Daily notes “Much of our patients’ time investments remain invisible to clinicians.” This year, in ASCO’s lead journal, three physicians have taken up the challenge, proposing that clinical trials, when reporting overall survival, distinguish between “Days with Physical Health Care System Contact” and days the patients actually own — “Home Days.” This a new idea only in cancer, say the authors — cardiology and other fields already make these kinds of measurements. When medicine’s best offer is a handful of months, we face difficult choices. Time toxicity casts a shadow over both survival time and quality of life. As we try to balance days added against side effects, it would be good to know how much of the time we’re gaining will be ours to spend.
Reading Ben’s thoughts prompted one of our regular participants to write a reply to us both that touched me to the core. I asked if we could reprint that too, and was graciously given permission on condition of anonymity. Here it is!
Ben, thanks for the article on “time toxicity” in the (recent) meeting announcement. It identifies an important consideration for all to think about in the fight vs. cancer and from my personal experience an impact that changes over time. Your write-up got me to thinking and pushed me to a holistic realization that this is basically an investment decision with expected returns.
For the prostate component of my cancer fight (now 17 years and counting), I did not think about the time investment in the first 14 years that I (and family members) were making to “do battle” (eg lab work, appointments with doctors, scans, treatments, family meetings, insurance challenges and personal downtime / reduced effectiveness in work due to treatment, etc.), It was a “no-brainer” decision and I never considered the tradeoff as the benefits for the opportunity to “continue to live life” due to treatments as my “life” returns were overwhelmingly positive vs.the “investment” required to do battle.
Having retired three years ago and simultaneously entering a new phase of my cancer fight I am aware of the increased time I (and family members) now spend on cancer treatment yet obtaining reduced time for life (and quality of life). I’m now spending significantly more time at Doctors appointments, treatments and longer periods of time post treatment feeling the physical effects of treatment and have begun to recognize I’m going to hit a point where this equation gets out of balance….and I’m not equipped with a decision model to manage that occurrence. Given my personal nature is to grind on stuff (I can make it work, give me time and let me try!) — I’m likely to blow right past the point of equilibrium where time toxicity and balance of life toxicity begin to get out of hand. For much of the first 14 years of my cancer fight I practiced a very large (and for me, healthy) dose of self-denial that I was dealing with prostate cancer. I was able to keep the cancer part of my life cordoned off, did not have significant residual time spent thinking / worrying / etc. about the disease and lived life to the max both personally and professionally. Now, in the last three years I am finding growing quantities of “thinking time” consumed by the disease and also sucking family members…. wife and children….deeper into the cancer battle as discussions / time encroach on them as well increasing the cost of investment (time) in the battle vs. cancer.
Prostate cancer is my second cancer fight, Ten years prior to the prostate cancer diagnosis I was diagnosed with a rare leukemia (rare as it was diagnosed in a limited number of folks (~2,000 / per year in the United States) and was usually fatal shortly after diagnosis as there were no lasting treatments until about 4 years prior to my diagnosis. As a freak outcome of scientific research a drug treatment was developed; the drug was intended for another cancer that had a much larger annual incidence of new cases; the drug was not effective on the targeted cancer but it was very effective on the rare leukemia. And at the time the treatment protocol was 7 days of continuous drip via a small pump one wore around the waist as an outpatient; minimal side effects; and if the first treatment didn’t work a second round was almost guaranteed to work. Talk about lucky! There was no way research funds would have been spent on this cure except by accident — which was exactly the case. The time toxicity for me in my first cancer battle was non-existent and I believe has indirectly helped me in the prostate cancer fight by giving me a dose of optimism and coping skills.
I think the topics raised by both of you….including Rick’s statement on treatment longevity results are important for the group to consider. These are relevant points of management in the cancer battle that I haven’t seen addressed by my oncologists (except one) nor psychologists and psychiatrists that I’ve also used in my treatment.
Editor’s Comment: In the original Reminder, I responded to Ben’s comments by adding one of my own. I pointed out that frequently Overall Survival benefits were shorter than might be expected because trials are often run on patients at a very late stage of their disease. This caveat should be considerd when we see the FDA reporting short life extension, sometimes as few as 2 or 3 months, for newly approved drugs.(rd)
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
Some 200 folks gathered together last Friday, June 24 at the Cold Spring Baptist Church in Mechanicsville, Virginia. to celebrate the life of our dear Advisory Board Member, Jerry Deans, Of Blessed Memory. I was honored to present one of the three tributes … and no surprise, we all said the same thing in different words.
In fact, Jerry continued to defy medical science for 23 years., He experienced almost every prostate cancer treatment known to man and his disappointment was that there was no more to roll out … but more of that later.
I first met Jerry when I was appointed to the Us TOO International Board of Directors in 2015, but I really got to know Jerry better when we both were selected to attend a week-long retreat for non-profit leaders in San Francisco in 2017.
During the retreat, I was amazed by Jerry’s ability to communicate with and support all of the other participants, most of whom were women. His extraordinary communication skills came from a sincere interest in the people around him, his ability and willingness to listen, and his positive non-judgmental and hope-filled approach to life and problem solving. He has spent countless hours using those skills for the benefit of the prostate community.
By the way, I was not the only AnCan’r present. Super-Volunteer aand Moderator Rich (and Brenda) Jackson drove up 100 miles from Norfolk, Va to keep me company. I was very grateful to see a familiar face. Boardie and Moderator,Herb Geller would have been present too, but was sailing in Scotland.
In the patient advocacy world, Non-Medical Switching has been a major topic this year.
Some may have read the excellent ediorial written by