There are so many great sources of highly quality information that we at AnCan do not need to contribute to the overload. But when we see a good article we will bring it to you, especially if it pertains to any of our groups. So here are two that fall into that category.
The first follows up on a queston raised in our Advanced Prostate Cancer Group on Tuesday, when a particpant asked whether he could delay treatment … in particular androgen deprivation and bone strengthening shots. And the week before we had a discussion about hospital visits at this time of virulent crisis. This article from The Washington Post reports on how the Covid19 is effecting several different cancer patients including one advanced prostate cancer patient enrolled in a clinical trial, who has adjusted his treatment.
The second link is to a CURE Talks interview with Dr. Stephen Pergam, Fred Hutchinson Cancer Center, University of Washington and several multiple myeloma patient advocates on the interesection of Covid19 and MM/blood cancers. You can listen to it here .
For us at AnCan, we have definitle seen an upswing in attendance to our meetings. In response we have added two sessions, and two new meetings for blood cancers, and for ovarian cancer.
Some of you already know one of the most remarkable members of our Advisory Board, palliative care doc, B.J.Miller. If you don’t, then listen to his TED Talk along with 10.5 million others!!! We are all getting ample Covid19 e-mail …. but if you got a missive directly from Bill Gates, I bet you’d read it.
Well today I received an e-mail from my buddy, B.J.s institute, The Center for Living and Dying. It contained his thoughts on the surreal crisis we all find ourselves in – and for me it truly struck a chord. To put it in my Marxian (Brothers) terms … are you a man or a mouse??? Read B.J”s thoughts and reflect – btw, it was mailed off-center .. and personally I think that is just perfect!!
And in case you didn’t get my allegory, Bj’s thoughts fall into the same category as Bill Gates – at least for me! (rd)
dear folks,
here we are, struggling and about to struggle more. i hesitate to add to the pile of missives flying around the ether, but i do want to shout hello and maybe sound a subtler note with a few reminders.
remember that, if we are in-tune and honest with ourselves, every one of us already knows vulnerability. we may have hidden it away or covered it over with self-assuredness or fortune, etcetera, but underneath our colorful coats has always been a sensitive, naked, tender, affectable critter. anyone who’s been ill or injured or disabled, loves someone who has, or is simply a sensitive soul, knows this feeling well where nothing may be taken for granted. the ground beneath us has never been as solid as we like to think it is. in other words, on some base level, we are not in wholly foreign terrain.but this time, our covers are being pulled collectively and simultaneously. that may be terrifying, and it’s also cause for hope. us versus them doesn’t make sense anymore, if it ever did. now, finally, we get to share the big common reality out in the open. we may be removed from one another, but we have never been less alone.
our humanity is being summoned, which means we will be seeing our real power. it’s soft and immense and adaptive and willing to get messy. we will also see ugliness and selfishness, in ourselves and others, but I bet the farm our gnarls will be overwhelmed by our beauty. though the cost will be hard to bear, we are about to learn so much. it’s a matter of survival now, not in the abstract, and that’s when we humans get serious and come together.
we are all being reacquainted with life’s basics and the awesome power of nature, including human nature. this goes for ourselves as well as for the systems we’ve invented – healthcare, government, economic. all are being tested now, and so all have a shot at evolving.
it’s also worth reminding each other that “social distancing” – usually a problem and now the solution – only pertains to physical isolation. we can still love each other. we must. we can still communicate over the airwaves. we can still mean well by each other. however you do it, keep ‘touch’ alive. losing touch can result in losing empathy, and that would be one sure way to make a bad situation worse. instead, let the longing build; it will help stave off loneliness and nihilism, and it will keep us feeling. those of us who have experienced compassion, whether coming from us or towards us, know that it’s always there. it just needs to be called-up and exercised. it needs an excuse to show itself, and suffering provides that excuse. one day, we’ll be able to directly share all that affection again, and you can bet it will be with heightened appreciation and passion.
from years of working with people who are dealing with the unimaginables of life, i can safely state that people are stronger than they tend to realize. we are. maybe it’s more accurate to say we are differently strong from the conventional, muscle-bound notions of strength. this bigger and suppler sleepy inner strength just needs a reason to flex. and here we are.
Like many of you this week, I have been reading multiple articles about how the corona virus may effect those living with cancer and how best to protect ourselves. Many of us who did not take this threat too seriously 3 weeks ago, are now reevaluating although I remind everyone that it may be no worse than the influenza threat that kills many each year – albeit we don’t read about it daily. WHO estimates between 250,000 – 650,000 die from influenza annually.
Amongst several articles that are in my inbox, I have a couple of first hand experiences. The first is from Shira Zwebner, a regular contributor to the CURE website, that you’ll find here; and the second is by our Board Chair Peter Kafka, reprinted from his meeting reminder to the virtual group Peter moderates. (rd – apologies for all the typos first time around; forgot to proof!!)
What A Difference A Week Makes
All of the sudden the world is thrust into a new paradigm in reaction to the onslaught of the Covid-19 coronavirus. I suspect that many of us can tell stories about how our lives and communities are already being impacted by this new threat. It looks like we are all in for quite a ride for some time to come. Some might discount these events or downplay the seriousness of the virus, but it can’t be denied that there is an overriding sense of fear and anxiety in many quarters.
How does this relate to those of us dealing with cancer? Oddly enough there are many crossovers and “take homes”. Who among us did not feel fear and anxiety and a sense that our world as we had known it was coming to an end when we were first diagnosed with this cancer? I know for myself that fear was a dominant feeling. Because it was all so new and I was unprepared and uninformed my emotional response was quite out of control. Fortunately, I found support quickly and was led to experts in the field who could set me on a steady course and explain exactly what was going on and help put things in perspective.
Most of us have found that our worlds did not completely fall apart. Yes, many things may have changed – they certainly have for me and those closely around me. But life has gone on and adjustments have been made. We humans are remarkably resilient creatures and can adapt to amazing challenges and circumstances. For myself, I have just embarked upon a heavy-duty regimen of chemotherapy for my aggressive advanced prostate cancer. Perfect timing to put myself into a situation where my immune system will be further compromised by the chemotherapy infusions. And what a time to have to show up at our local hospital every three weeks for a day of infusions. So much for my luck.
I guess I am one of the lucky ones who has jumped to the head of the line in the high-risk category for dying from Covid-19 Coronavirus, over 70 years old with cancer and a compromised immune system. But somehow, I am just not over consumed by this thought at the moment. I am not going to be cavalier and take stupid risks, but I can really only deal with one big threat at a time and for me it happens to be the prostate cancer. I think my ongoing 6-year journey with this disease has put me in a mindset of preparedness. Fear is no longer driving my decisions and actions. Understanding and intelligence rule the day for me.
Editor’s choice: Learn first hand about certain side effects from the immunotherapy drug, nivolumab (Opdivo).
Pharmokinetics of Lupron – explained a little; side effects of immunotherapy anti-PD1 drug Opdivo; treating liver metastasis; getting palliative doc involved; durolutamide results; starting ADT froom scratch; monitoring G5+5 PCa after you come off LHRH; what to know when starting chemo; neuropathy and maybe how to prevent it from chemo
Chat Log
Russ Smith (to Everyone): 7:20 PM: Turns out I was given a script today for Casodex.
Ken Anderson (to Everyone): 7:22 PM: Russ
Ken Anderson (to Everyone): 7:22 PM: good to know!
Our lead Sarcoidosis Virtual Group moderator, Frank Rivera, is nationally recognized in both the sarcoidosis and rare disease communites. Frank is an amazing and inspirational individual who has just self published his story, ‘Walking in Silent Pain’ on Amazon. To read more about the book, please click here.
And if you are on Amazon, and have not already signed up for Amazon Smile, please do so and nominate Answer Cancer Foundation. For every dollar you spend on Amazon or Amazon Prime, they donate a half-cent to us at no expense to you. It mounts up, so please particpate.
