SEVEN YEARS for Peter Kafka  …… a meaningful number!

SEVEN YEARS for Peter Kafka …… a meaningful number!

Peter Kafka, our Board Chair and Lead Moderator for several of our video-chat virtual support groups, poignantly reflects this week on the meaning of 7 years living with his prostate cancer. (rd)

One subject that comes up fairly often in our prostate cancer support calls is “fatigue”.  Usually in the context of dealing with physical fatigue as a side effect of various treatment drugs.  But I am thinking today about a different level of fatigue that affects us mentally and emotionally.  We hear a lot about this in regards to the ongoing Covid-19 pandemic.  A year or so into it and people are crying out, “Enough already!”.  But I would guess that many of you feel the same sentiment regarding your ongoing experience with a prostate cancer diagnosis.

I have reached my 7-year anniversary since my official diagnosis of prostate cancer.  What is it about the number seven?  Yes, it has some kind of man-made spiritual significance.  The seven colors of the rainbow, the seven days of the week, Snow White and the Seven Dwarfs and of course the Seven-year Itch.  But as I (celebrate?) this seven-year anniversary of dealing with my prostate cancer I hear myself crying out, “Enough Already!”.  Fatigue is setting in.

I have done my best to look at this disease from a wide variety of angles.  The friendships I have made with many of you.  The increased understanding of the dynamics of prostate cancer among an ever-increasing body of men and women.  The empowerment of taking on the job of being one’s own best advocate.  But in honesty, prostate cancer and all the accompanying side effects of the variety of treatment modalities that I have, and continue to experience, bring on a good deal of mental and emotional fatigue.

I don’t believe that medical science graphs this fatigue factor.  We read a lot about “overall survival – OS” or “progression free survival – PFS”.  I guess the category of “Quality of Life” might come closest to what I am talking about, but it doesn’t quite capture the essence.  I suspect that any of you who have been on this journey for any length of time know what I am talking about.  I don’t have an answer, and I am certainly not selling any kind of snake oil for treatment.  I know in my heart and mind that this bump in the road will pass and I will move forward.  I always do.

Ho’oponopono – Reflection and Forgiveness

Ho’oponopono – Reflection and Forgiveness

At our last Cancer Caregivers Virtual Support Group meeting, Wendy Garvin Mayo, APRN, RN brought a wonderful resource to our attention!

Ho’oponopono – is a Hawaiian practice of reflection and forgiveness.  On Saturday, January 24rd at 11am EST, Cindy Cooley Brockway and I are hosting a second Morning Shared Journaling Experience that is a reinterpretation of this beautiful practice.  

”I’m sorry. Please forgive me. Thank you. I love you.”  Gentle, cleansing, creative and refreshing.  

Hope you can join us: click the link to join https://us02web.zoom.us/j/89798556209

I’m certain this is a can’t miss event for healing. Thank you so much that you do for our community, Wendy!

 

For information on our peer-led video chat CANCER CAREGIVERS VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page

“Pokey Man” …  Peter Kafka, AnCan Moderator & Board Chair, Gets Vaccinated

“Pokey Man” … Peter Kafka, AnCan Moderator & Board Chair, Gets Vaccinated

Our Board Chair and long time moderator, Peter Kafka, tells us how he fortuitoulsy got his Covid vaccination last week. For the first time, Peter adds the High Risk/Recurrent//Advanced Prostate Cancer Group to his Moderation repertoire this week.

POKEY MAN

i just returned this morning from getting my initial Covid-19 Moderna vaccination.  Happy to report that it was an uneventful event.  My anxiety level was increasing in recent days as our positive cases began to tick up considerably out here on little Maui in the middle of the Pacific ocean.  Information here is slow to filter down and when I inquired about the shot I was tole that it would be some time in April or May since I was not yet 75 years old.   Then, I got a surpise call from the Pacific Cancer Foundation which I volunteer for in a support and advocacy capacity and they told me that they could get me into their priority group today.

I am certainly not bragging about the above, but I mention it because there was absolutely no hesitation or concern in me about going forward with the vaccination.  In the past 7-years I have been poked and scoped and proded more times then I can count.  This kind of comes along with signing up for medical treatment for advanced prostate cancer.  I understand that there may be as many as 40% of Americans who may decline getting a Covid-19 vaccination according to polls and predictions.  And this is a personal choice in our society.  But I doubt that those of us who find ourselves in this subset of Prostate Cancer guys would be so reluctant.

Over the years I have met men who chose not to enter into any kind of treatment for their more advanced prostate cancer diagnosis.  Some of these men are still around and others not.  I always wrestle with what my role is in this decision.  I can encourage, I can strongly suggest that someone at least consult with a doctor who might be more pursuasive than me, and most of all I can point to myself as an example of a man who has not suffered from a host of medical treatments thus far.  But in the end everyone must live or not with the decision they make.

The other day we had an AnCan Webinar with Dr. Jonathan Epstein, the go-to pathologist at Johns Hopkins for second opinions.  He mentioned that he does actually consult with some of the men who reach out to him.  This brought a smile to my face when I recalled a good friend who was leaning toward his own alternative treatments for his GL-4+3 diagnosis.  I encouraged him to get a second opinion from Dr. Epstein.  On his own he called the office and Dr. Epstein listened politely for 10 minutes while my friend described his alternative treatment protocol.  Dr. Epstein responded, “That is all fine and good and you can continue with that protocol but you need to know that without medical intervention this disease can kill you!”  That was all it took, a few weeks later he was getting radiation and he is doing fine and we are best of friends.

Pushing Past Cancer: Stronger Together Virtual AYA Summit

Pushing Past Cancer: Stronger Together Virtual AYA Summit

On Saturday, December 5th I had the amazing honor of not only being around amazing people, but I got to do it all proudly representing AnCan as well! I attended the Pushing Past Cancer: Stronger Together Virtual AYA Summit presented by UCLA Health AYA Cancer Program, UC Davis Comprehensive Cancer Center, and Stupid Cancer.

AYA stands for Adolescent and Young Adult in the cancer community, and I hope the terminology will extend in all of medicine. The age range is typically around 15-39, but up to 45 is being more widely accepted now. Our population has a lot of specific issues that pediatric and adult sides of oncology can’t fully reach. Dating, fertility, sexual health, work, college, and mental health are big concerns in our community.

I really enjoyed the conference tackling these issues in a way that’s comfortable for us. My favorite webinar was “Mental Health After Treatment” with Dr. Valentina Ogaryan (Licensed Clinical Psychologist at UCLA Simms Mann Center for Integrative Oncology). She talked about how important support is at any part of a cancer diagnosis. A neat term she used was “the support squad” (which is a great shout out to millennials!), and explained what yours could look like.

One of the closing panels about “What I’d Wish I’d Known…” was just incredible. To hear my peers voice the same feelings I had, and continue to have, was affirming and encouraging. No matter what the diagnosis, we still share similar anxieties and experiences.

An awesome highlight of the day was my team (The Orange Blossoms, because we all had a connection to the color orange, mine is my hair color!) won second place at the trivia after party. Fun fact: a lot of us here at AnCan love trivia games, and I had a lively conversation with Rick and Kim Stroeh about it. An AnCan trivia night would certainly be filled with stiff competition.

We currently have peer support groups for many of the AYA cancer’s present at the conference, Blood Cancer, Ovarian Cancer, Thyroid Cancer, Renal Medullary Carcinoma, Men’s Breast Cancer, and the additional support groups for Caregivers and Men Speaking Freely, we’re always expanding until we hit our mission of providing barrier-free support, no matter where you are!

Stay tuned, because we will be offering even more support for AYA’s in the upcoming year. We have lots of great things in the works, and I can’t wait to share them with you. We’d love to be a member of your support squad.

“Pokey Man” …  Peter Kafka, AnCan Moderator & Board Chair, Gets Vaccinated

Cancer Causing You Problems at Work??? …… we have an answer!

Sometime over the past month, a man attended one of AnCan’s video chat, virtual support groups with a big problem on his mind.  This man had been on hormone therapy – more precisely androgen deprivation therapy, for close to 12 months and he was suffering, physically and mentally from having little or no testosterone in his body. He was fatigued, had “Lupron Brain” – brain fog, and was emotionally on the edge … all the time.  Moreover,  & understandably, he didn’t want to let his employer and workmates know he lived with advanced cancer. Result ….. he unintentionally upset colleagues, couldn’t complete his work tasks and …. received an offiicial employment warning.

This fellow came to us for support, and the best we could do was to suggest he speak to Human Resources under confidentialty; and/or  seek an employment lawyer. What we didn’t know is that there is a non-profit out there to assist … and in their own words, this situation is their bread and butter.

Cancer & Careers is dedicated to tackling cancer-related problems in the workplace. Whether involving healthcare, employment, job seeking, employment law, Covid, or working through treatment – Cancer and Careers will help you resolve any of these issues and more, both one on one and through webinars, handouts, and other educational supplements. Check out their website and don’t hesitate  to reach out to them if you have a question that needs answering.

What’s more, Brian Morvant, a senior program coordinator at Cancer & Careers told us just today in a presentation for our Male Breast Cancer Virtual Support Group that Cancer & Careers still offers a maximum grant of $500 per family experiencing financial challenges … apply now!

Alexa Jett, former WNBA champ, Kim Perrot … and the Place they come together

Alexa Jett, former WNBA champ, Kim Perrot … and the Place they come together

Alexa JettAlexa Jett has recently connected with AnCan – initially to co-moderate the planned thyroid cancer virtual group we hope to start by year-end. But subsequently her infectious, warm and enthusiastic pesonality opened volunteer opportunities with us. Alexa recently directed The TALK – MS webinar, and she has introduced the Renal Meduallry Carcinoma (RMC) group to us wthat will have its first meeting this ocming week. Now we are working on Adolescent & Young Adult (AYA) opportuities.

Alexa survived recurrent papillary thyroid cancer, most recently in 2019. First diagnosed in 2017, aged 25, Alexa was treated at M.D. Anderson. Whilst there, she refequented Kim’s Place – the AYA retreat where she met one of our RMC moderators, caregiver Charissa Monroe, who lost her husband to RMC.

ESPN published an article this week on how Kim’s Place came to be, and Alexa was interviewed extensively, It was just published on The Undefeated blog and you can read it here:

How the late, great Kim Perrot keeps the Houston Comets’ legacy alive