Things don’t always go the way we plan … or want.- from the recent elections to our health, to just taking care of daily biz. We have to be careful how that impacts the way we interact with others. Peter’s thoughts crystalllize how our emotions can impact many more than just us (rd)
“WINNING AND LOSING”
As I sit at my desk, it is Monday morning November 2nd the day before election day. I woke up this morning thinking of this theme and how applicable it is to those of us dealing with a cancer diagnosis. In our case a diagnosis of Prostate Cancer.
For 24 years my final career was as a maintenance supervisor for Haleakala National Park. One of my duties in that position was to be a Heli-Manager. This involved coordinating and managing the ground operations for the periodic use of contract helicopters that we used to transport firewood and other materials to the Park’s historic backcountry cabins. This job had many inherent dangers including hooking up a swivel cable to the belly of a helicopter hovering just a foot or two over my head, loading cargo nets with materials to be sling loaded to the drop sites, calculating the weights of each load, ensuring the safety of myself and that of the rest of my ground crew and communicating by radio to the pilot and others of my crew on the receiving end of the cargo. It was a lot to keep track of, and it required a high level of intensity and concentration.
One Monday morning during this operation one of my employees came to work, and his home state professional football team had lost in the playoffs the day before. He was pretty bummed out. So bummed out that I didn’t take it seriously at first. Afterall, football was just a game in my mind. Life goes on. But in his mind, it was pretty close to the end of the world. I tried my best to get him to “let it go”. But he would not drop his gloomy attitude of defeat. It was so pervasive in him and he would not stop talking about it to the rest of the crew. It was becoming a big distraction and for the safety of our task at hand I had to send him off to do another job on his own far away from our helicopter operations.
I bring up this story because it is all too easy to associate a cancer diagnosis with somehow losing. This can be an insidious and infectious attitude that can not only weigh down ourselves, but those around us including family, friends and even our medical support community. An exaggerated negative attitude and clinging to the feeling that one has “lost” can be a dangerous distraction.
In the bigger picture, we have not lost. Our bodies might be quite challenged due to our diagnosis, but we still have a vital part to play in our family, our workplace, our community and it is NOT to infect all of these others with a bummed-out attitude lest we drive them away, and we quickly will.
Our attitude, like diet and exercise is one of the key things that we have absolute control over. In my own experience if I find myself starting to wake up on the wrong side of the bed, I rearrange the furniture and put THAT side of the bed against the wall so that I have to wake up on the RIGHT side. Bottom line, take responsibility for your own attitude!
Editor’s Pick: Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!
Topics Discussed
Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?
Chat Log
Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control
Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.
Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?
Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.
Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.
Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT
Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern
Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?
Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend
John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that
AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/
Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?
Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?
Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.
Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?
Kenny Capps is a pretty remarkable individual … a runner his whole life, he was diagnosed with Multiple Myeloma in 2015. Only in his mid-40’s, Kenny was much concerned about Quality of Life during treatment. much like AnCan’s Founder, Rick Davis, Kenny returned to endurance exercise soon after the bone marrow transplants. In 2018, he ran the 1125 miles N. Carolina Mountain to Sea Trail in 54 days.
Kenny has now partnered with AnCan to establish our Blood Cancer Virtual Support Group with his non-profit, Throwing Bones. Throwing Bones is dedicated to improving quaity of life for people living with blood cancers through sponsoring healthy and active lifestyles. It recently launched an educational webinar series on Exrecise & Cancer, that you can hear at https://throwing-bones.org/cancer-active-education/ .
Just a few days later, Kenny recorded an intereview with Eshter Schorr, Patient Power Co-founder. While that has not yet been published, it is coming soon on http://www.patientpower.info/ I, for one, can’t wait!
Trevor Maxwell is a remarkable man. A young colorectal cancer survivor, he and Joe Bullock, another colorectal cancer survior, have formed Man Up To Cancer. This is a safe and suportive space for male surviors to speak about their condition.
Trevor comes to AnCan via our good friend at Inspire, John Novack, and also through our prostate cancer participant, Russ Smith who is active in Man Up To Cancer. Trevor’s recent video essay on situation is touching and piercing at the same time. Here is what he writes:
6.24.20
“When the storm of cancer hits, you need protection. Something to shield and strengthen you. My shield is an oak tree.”
This short film on YouTube (4 min) was produced and edited by my talented friend, Roger McCord. With stunning footage taken from ground level and from high above the coastline, the film captures the heartache and hope of my cancer journey.
The TALK is a series of webinars addessing how parents and kids of every age speak to each other about their health conditions. If you haven’t noticed, this is a topic that rarely get aired in public – AnCan hopes to address that over the next several months.
We started last Tuesday, June 30 with a discussion around prostate cancer, moderated by genitourinary medical oncologist extraordinaire, Dr. Alicia Morgans speaking with panel members that included pairs of father and child from ages 17 to 43. We also welcomed Dr. Ryan Berglund, a urologist at Clevaland Clinic and spokesperson for MENtion It, a men’s health awareness campaign sponsored by his institution. Dr. Berglund had excellent slides and a 2 minute video that we were unable to view due to a SNAFU by our co-presenters, UsTOO. But the magic of modern technology allows us to provide them to you here …. click here – the video is embedded in the 5th of 6 slides. And to watch the whole, outstanding presentation, click on the video above
Editor’s Pick: Long discussion on the impact of sugar, glucose and cancer
Topics Discussed
Sugar, glucose, insulin and PCa; what next after 2nd line anti-androgens fail?; is there a right # of chemo cycles?; taxane based chemo; diabetics and hormone therapy; Gleason 8 with ultra-low PSA; darolutamide; spot radiation; what’s an ‘oncologist’?; should have had a V-8???; IGRT; Truliicity; moving on from your urologist; blood transfusions; more on selecting the next treatment
