Our Advisory Board member Renata Louwers wrote an incredible, honest, and powerful piece for Intima: A Journal of Narrative Medicine titled “We Can Offer You Some Helpful Resources”. She shares her experience that sadly, many caregivers will find relatable.
Teetering on the cusp of widowhood at 45, I realized my intensity had sent the hospital social worker scurrying away. Ours had been a tense and circular conversation littered with euphemisms (by her) and rage (by me).
She had initiated the conversation by saying she understood how tough “the journey” had been. Then she continued on about the “discharge protocols.”
“I can’t take him home,” I protested. “I can’t care for him at home.”
As if to prove that I actually could care for him at home, she noted “the care team has already signed off” on his discharge, and she was just awaiting the paperwork. The team would, she assured me, do all they could to “support this transition.”
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 11, 2021
Editor’s Pick:Great discussions this week – trials vs chemo, absurdly high T on LHRH + abi, sweet smelling urine – but the prize goes to Being Your Own Best Advocate … someone’s listeing to us!(rd)
Topics Discussed
Another trial or finally try the the SoC – chemo?; cyclophosphamide; PSA doubling times; post-AUS surgery – and more incontinence issues; testosterone returns; Dr. Morgans on the move … and Dr. Antonarakis!; brachy+IMGT+HT is the gold standard; abiraterone and liver effects suggests switch to darolutamide and DUDE program; hormone therapy prematurely ages us; when it comes to Axumin and MSKCC, Be Your Own Best Advocate; what’s that sweet urine smell – pre-diabetes?; neuropathy; Frank finishes chemo; Testosterone supplementation; T of 750ng/ml on ADT + abi?? – sure that’s your sample?
Chat Log
Jerry Pelfrey (to Organizer(s) Only): 3:06 PM: Rick what is the name of AnCan on facebook? I have looked and can not find it anywhere.
Herb Geller (to Everyone): 3:30 PM: Doubling time is the time it takes for PSA level to double. So if it goes from 8 to 16 in one month, then doubling time is a month.
Ravi (to Organizer(s) Only): 3:48 PM: so if T varies so much, what is the best time to test?
AnCan Barniskis Room (to Organizer(s) Only): 3:49 PM: not sure Ravi …… but maybe best to test always at the same time???
Herb Geller (to Everyone): 3:59 PM: Van Veldhuizen at Rochester
AnCan Barniskis Room (to Peter Kafka): 4:08 PM: switch out of abi to enz
Joe Murgia (to Everyone): 4:45 PM: After about 18 months on bicalutamide my A1c went up to 7.8. I’ve been on metformin to control my blood sugar for almost 3 months and I’ll be getting an A1c in 2 weeks. My AM fasting blood sugars have improved. Any help it may give in fighting the PCa would be welcome.
Ravi (to Organizer(s) Only): 4:46 PM: Thanks, Joe
Joe Gallo (to Everyone): 4:47 PM: Get the basic Lipid (panel current levels)as well as A1C (3 months average). Both are valuable.
AnCan Barniskis Room (to Everyone): 4:47 PM: From Ravi …. Thanks, Joe
John Ivory (to Everyone): 4:57 PM: I’ve got to run to another Zoom. Good to see everyone! Aloha, Peter!
Jeff Marchi (to Everyone): 4:59 PM: took biclutamide for a year but A1C nverwent above 5. I keep weight down, weigh daily. I almost never eat sugar, and am very careful with carbohydrates, that really helped. last test was 5.3. have to really monitor diet. never above 5.6
Pat Martin (to Everyone): 5:02 PM: I appreciate this group…300 years of experience and still has a sense of humor.
Herb Geller (to Everyone): 5:07 PM: I gotta go, guys. Dinner’s on the table. Sorry.
Aloha, friends! We have some wonderful thoughts once again from our Board Chair, moderator, and most important, our dear friend Peter Kafka. We love you, Peter!
THE LEARNING CURVE
Yesterday I made the leap and upgraded my smart phone from my old Samsung android which was not functioning or charging very well to a new I-phone. I was warned that there would be a learning curve to navigate, and I feel I am up for the challenge. Of course, I have mentors close at hand like my son and daughter-in-law and grandchildren, but their fingers fly so fast over the keys and apps that my brain just can’t keep up and I get lost. I suspect you know the feeling well.
I bring this experience up because it reminds me of the steep learning curve that most of us face when diagnosed with prostate cancer at any level. There is a hell of a lot to learn to say the least! Our AnCan motto for our support groups is; “Be Your Own Best Advocate”. This admonition can be quite an ambitious goal for many of us. I noticed my own over eager attempt to “educate” a recently diagnosed man who found his way to my phone number the other day, not unlike my grand daughter’s attempt to furiously try to teach me the secrets of all the apps on my new phone. How quickly the mind can zone out.
Then there are the numerous inherent “handicaps” (if that is still a politically correct choice of words) that we face including;
Age: Prostate cancer seems to strike most of us in our 60’s when our mental capacity and acumen is not in its prime. (Go ahead and say; “speak for yourself!”, just saying….
Medical Terminology: Few if any of us are trained as medical professionals and acquiring understanding in the field of cancer can be quite daunting.
Advancements: The field of medicine is changing and progressing rapidly. “Warp Speed” is no longer a science fiction term.
Brain Fog: The treatments that many of us endure certainly don’t help the cause.
Add your own: Be my guest…
If you have attended any of our live online AnCan support group meetings you will have noticed that many of us are “regulars”. We are not GROUPIES following bands like The Grateful Dead around the country, but rather just guys trying to wrap our heads around this strange disease and better understand what our options are going forward. The light doesn’t come on with a flip of the switch, at least that has been my experience.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
On March 24th, we had the pleasure of having our very first performer, Jackson Nogahl! He celebrated his ten-year anniversary with prostate cancer on Valentine’s Day 2021. He has been finding humor in his experiences living with this condition as he writes his memoir War and Pee.
He gave a virtual performance of The Rain Delay:
Chronicling his first day back to work after prostate surgery, this work weaves together the lessons of a 1990s skateboarder, tallboy beers, Clydesdale horses, a magic trick, the power of prayer, the most beautiful woman in the office, and above all else, Mother Nature.
Afterwards, Rick Davis and Jackson discussed the importance of connectivity, especially for those living with serious diseases and conditions.
Watch this hilarious, and thought provoking performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Have you checked out our page “All the Faces of AnCan” lately? We are always growing, and you might see some new faces! While we’ve discussed Dr. Herbert Geller (researcher and AnCan Advisory Board Member) previously on the blog, we have a special treat today. Dr. Geller was part of an esteemed panel explaining the science behind mRNA Covid-19 vaccines with CureTalks.
I find this description of what mRNA means and brief explanation from CureTalks to be extremely helpful.
Messenger RNA vaccines, also called mRNA vaccines, are some of the first COVID-19 vaccines authorized for use in the United States. mRNA vaccines are a new type of vaccine to protect against infectious diseases. They teach the cells of our body to make a protein that triggers an immune response. This immune response leads to the production of antibodies which protects us from getting infected if the real virus enters our body.
Be sure to check out this informative presentation, here!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
