by Rick Davis | Jan 10, 2021 | Recent News, Advocacy, AYA, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, Maui, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, nmCRPC, Nutrition, Ovarian Cancer, Prostate Cancer, RMC, Sarcoidosis, Thyroid Cancer, Women's Breast Cancer
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.
by Rick Davis | Dec 21, 2020 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men 'Speaking Freely', Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Recent News, RMC, Thyroid Cancer
Almost 18 months ago, AnCan was honored to host a fascinating, thought provoking webinar titled ‘The Language of Cancer’. To save repetition, click on this link to learn exactly what that means. Essentially we are speaking about how cancer patietns refer to themselves, and how the medical world may employ language that is unintentionally insulting.
By way of example, a doc often say a patient has failed a drug ……. NO, the patient hasn’t failed the drug – the drug has failed the patient!
Just the past week, when we were discussing this very webinar and topic in one of our virtual groups, one of our webinar panelists published a new article on the same old topic in Psychology Today, Prof Jamie Aten is the Founder of the Humanitarian Disaster Institute at Wheaton College, where he also teaches psychology. He has also lived with Stage 4 colon cancer diagnosed 7 years ago, though, thankfully, Jamie is currently NED – No Evidence of Disease.
If you live with cancer or are a caregiver, it’s almost certain you’ll have an opinion on this topic. We welcome your response if you’d like to write your own blogpost!
by Rick Davis | Nov 8, 2020 | Cancer Resources, Blood Cancers, Brain Tumors, Cancer Caregivers, Complementary Medicine, Maui, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News, Thyroid Cancer, Women's Breast Cancer
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!
by Rick Davis | Oct 22, 2020 | Cancer Resources, Advocacy, AYA, Blood Cancers, Brain Tumors, Cancer Caregivers, Maui, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News, Thyroid Cancer
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!
by Rick Davis | Oct 11, 2020 | hospice and palliative, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Maui, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, nmCRPC, Prostate Cancer, Recent News, RMC, Sarcoidosis, Women's Breast Cancer
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!
Recently AnCan in partnership with UsToo initiated a webinar series titled; The Talk. The series focused upon the significance of conversations with family, particularly our children regarding the implications of a diagnosis and treatment for cancer. My younger son Jeffrey and I participated in the panel of the first webinar speaking about the reality of genetic driven prostate cancer and the possibility of passing it on to my children.
Last night I was thinking about another “TALK” which was a big part of my experience this year and one which is often difficult to have. In early May of this year my one sibling, my sister passed away at the age of 78-1/2 years. She was kind of a renegade and a rather unique woman. Her first love and passion was riding motorcycles. When she died, she left 3 bikes in her garage including her 1981 RS -1100 BMW. She began her motorcycle experience way back in the 1950’s as a beatnik in Greenwich Village. Later she made numerous trips to ride in Asia, Europe and all over N. America attending many BMW rallies.
I mention this because as her health declined in her later years, she was quite clear with me about not wanting to prolong her life when she could no longer ride her bikes. She and I had numerous “talks” about end of life issues. She always thought she would “go out” in a fiery crash, but alas it was not to be. She broke her hip and because of many other leg problems it was doubtful that she would be able to walk again. After hip surgery she was moved into a nursing home where she lasted about one week.
Her last couple of weeks she was pretty foggy and incoherent but she and I were able to connect via Face Time a day or two before the end. She knew me, and expressed her wish to get out of the facility and go home. I told her that until she could master a walker she could not do so. She knew that was not to be and I asked her if she was going to go to “Plan B”? She said; “Yes, it would be Plan B”. A day or two later she refused her food and meds and removed her oxygen and facilitated the end of her journey. She knew she lived a remarkable life and lasted beyond her expectations and was ready to depart.
I am very thankful that we made the space to have, The Talk so that we both were prepared for the unexpected. It made the transition so much easier. I guess I bring this up because it is kind of the elephant in the room for all of us and so many ignore this reality and put off The Talk. Most likely very few if any of you who participate in our Low and Intermediate Prostate Cancer Virtual meetings will pass on as a result of this disease, but still the fear tends to lurk in the mind.
by Rick Davis | Aug 31, 2020 | Cancer Resources, Advocacy, Brain Tumors, Cancer Caregivers, mCRPC, Men's Breast Cancer, nmCRPC, Ovarian Cancer, Prostate Cancer, Recent News, RMC, Women's Breast Cancer
Many of you already know, AnCan works closely with Foundation Medicine Inc who offer Next Generation Sequencing (NGS) somatic liquid and solid tumor testing.
Here are THREE great pieces of news shared with us over the past few days:
- The ‘new & improved’ Liquid CDx Test was FDA approved late last week, meaning this test now covers the same 300+ mutation panel as the solid tumor test – but at the prick of a needle! . Read their full press release here.
- Medicare considers the Liquid test to be separate and independent from the Solid Tumor test meaning both are covered for the same individual at different times.
- AND that’s not all ….. finally we have a decision back from FMI that repeat testing for either Liquid or Solid is Medicare covered IF there is disease progression. In FMI’s words (that we are approved to disseminate):
AnCan’s always advocating for you ……. and thanks to the FMI team for pursuing this, especially Senior Manager for Patient Engagement, our good friend David Marshak!
