Wednesday, December 2, 2020

MICHAEL'S CHOICE: A DIFFERENT END-OF-LIFE PLAN

By: Lorraine S. Davi (San Francisco, CA)- edited by: Graciella Davi & Carmen R. Dewitt  / NY Cancer Resource Alliance

INTRODUCTION:
I dedicated my career in Cancer Awareness and Recurrence Prevention not just to fight cancer, but to promote the public commitment to staying proactive with their health ("GET CHECKED NOW!" mission).  My own experience of having lost someone who DID NOT WANT TO UNDERGO ANY CANCER TREATMENT was a challenge that shaped all this.  It took a long time for me to put my feelings aside and honor his wish to "live all the remaining final days to the fullest"- instead of undergoing the many pains and challenges of treatment.  

Since Michael, I found more and more victims choosing this decision.  Some are convinced that cancer treatment is a temporary band-aid and that cancer will always come back anyway (so why bother).  Another deciding factor was MONEY- where the cancer victim chose the path of not bankrupting his/her family with what many consider to be a "deadlier" bill than the cancer itself. Others choose to exist a post-diagnosed life without STRESS, that which adds to the malignancy.  In the case of Michael's story, the thought of a pre-determined or pre-destined cancer from known heredity became a self-fulfilled program.  Either way, I chose to finally share my story hoping to keep everyone in the fight... IF they choose to. 

This is my story.


In April of 2008, my (then) fiancĂ©e Michael received his colonoscopy report showing scans of a golf ball-sized tumor in his colon.  Michael was always a bit closed about his family, but it was then that I learned about his parents' history of hereditary cancers and the rare genetic disorder that ran through his father's side called Lynch Syndrome.  

As shocking as the diagnosis was, we were even more stunned to receive Michael's reaction-- what seemed like a pre-written plan to something that he seemed to expect was going to happen.  "My whole family is a ticking time-bomb and I guess now is my turn", he said, with an icy calm. "Since I was a kid, I've been thinking about how to handle this if and when it was going to come. I made a simple plan to live out the rest of my life the best way I can-- not putting ANY attention to (this) cancer.  This means NO treatments or spend a second fighting the inevitable".

At first, I found his view to be boldly selfish. "How could he do this to his loved ones?" But the more I thought about it, maybe WE were the selfish ones to make him undergo all those horrible chemotherapies and radiation at the hopes of keeping him around indefinitely.  Either way, this was unlike any other reaction I have ever heard of when someone gets diagnosed.

Just so happens, I spent years as a volunteer fundraiser to a handful of cancer organizations and knew then that there was no shortage in cancer research programs for ANY kind of cancer.  I have read and reported about so many treatment protocols, clinical trials and diagnostic innovations where the race for a cure is definitely at the highest point ever.  By this, there is always HOPE for an eventual CURE.  But regardless of generations of advancements at our grasp, Michael's decision was firm.  He always believed that his limited TIME and MONEY should be best spent living each moment, and not "gamble on hope."


By the fall of 2009, Michael passed away, but not without fulfilling his so called "set of final Hurrahs"- or what most call a 'bucket list'.  The crescendo of his final days ended in a stark silent emptiness in the hearts of many.  But to some of us, supporting the fight for a cure was fanned with new energy and conviction. I may not be an oncologist or a genetic specialist or a cancer immunologist (or even a patient advocate), but Michael's story helped shape my crusade toward anyone else from CHECKING OUT this way.  I became a data fiend, tracking cataloguing all available resources for cancer patients.  From personal grants to treatment alternatives to  housing help to the smallest wish and possible need - literally everything is available and accessible! But in addition, if we can show (and prove to) our loved ones that the fight to extend life was worth it, and we can introduce a new program by bringing confidence in the current global cancer initiative - maybe that's what TRUE PREVENTION really means.


VIEWPOINTS

ROBERTA KLINE, MD (genomicmedicineworks.com)
This story brings out complex issues with our healthcare system, including power imbalance. In my experience, people who refuse treatments have one thing in common: feeling disempowered. Whether it expresses as fear, rejection, rebellion or self-sacrifice, in the end the person is taking back their power from a system that, at its core, strips their locus of control. Honoring each person’s spiritual journey, and their health challenges within that, is imperative. But our system fails patients all along the way. How we research, convey information, make diagnoses and prognoses, and approach treatment including the cost of it. Especially with inherited genetic diseases, too often a “death sentence” is given without any understanding of how to empower people with the right knowledge and resources to make critical decisions. Innovations like Genomic Medicine are changing that. With a holistic approach to DNA-based care, people feel empowered to create a health strategy that works for them. 

ELIZABETH BANCHITTA, Technical Contributor / EMT
The article Michael’s Choice paints a realistic picture of the painful realities facing patients with an aggressive illness and the options, advances and need for continued perseverance toward cure and the insistence upon hope. It also reminds us of why we are driven and persistent in what we do; fighting so hard for a cure. It is my belief that the best way to prevent illness and injury is to remain disciplined and diligent in one’s efforts including "getting checked" by one’s health care team. I completely understand why Michael made the choice to forego cancer treatment as he was prepared with a mindset and a plan as he anticipated the outcome of his inherited genetic disorder and chose what was comfortable for him. The truth is that cancer, with all its complexities and uncertainties, is scary for everyone involved. Perhaps Michael would have changed his mind if fear of a  heavy financial burden of treatment could have been offset. The best way to determine your options is to stay educated. Cancer treatments and protocols are changing by the day. The diagnoses, written only as “Ca”, and once considered a "death sentence" when my mother was a new nurse in 1981, these cancers are now detected earlier and are more easily treated with various options for comfort and cure. Education in many areas may be one of the most powerful tools for successful healing answers for a patient and their family.

CHERI AMBROSE (President, Male Breast Cancer Coalition
I found Michael's Choice to sadly be the voice of many.  That feeling of fear that grips so tightly when hearing a cancer diagnosis can often time cause us to shut down. Though Michael had options, he knew that prolonging the inevitable would only make him feel less power over his own life and choices.  I feel the medical community as a whole can and should do better to engage each patient. To treat the whole person and not just the disease. In doing so, patients would experience a better quality of life and be more apt to opt into treatments. 


SYLVIE BELJANSKI (Author: "Winning The War On Cancer") 
Michael’s story is about how painful it might be to be respectful, and to accept our loved ones’ decisions regarding their choice of treatment. Whether they choose to go with conventional, integrative or alternative medicine, or no treatment at all, this ultimate decision remains theirs. We can only hope they reach their decision in the most educated way. And there is so much out there! There is definitively no bad time to start educating yourself about health and wellness, but doing it under the pressure of a diagnosis is not the way to go, because the information is just too overwhelming. 





11/28/2020- According to a report from the NIH, "the cost of cancer care is the most rapidly increasing component of U.S. health care spending and will increase from $125 billion in 2010 to an estimated $158 billion in 2020, a 27% increase. Most experts agree that the current escalation of costs is unsustainable and, if left unchecked, will have a devastating effect on the quality of health care and an increasing negative financial impact on individuals, businesses, and government."   A sensible first base was to connect with all the community groups and cancer foundation leaders or anyone in a leadership role who recognizes this economic dilemma and "the real price of cancer". (see complete article)



CANCER RECURRENCE: Viewpoints and Strategies (See Video)
11/8/2020- When cancer comes back after treatment, doctors call it a recurrence-  or recurrent cancer. Finding out that cancer has come back can cause feelings of shock, anger, sadness, and fear. But you have something now that you didn’t have before—experience. You’ve lived through cancer already and you know what to expect. Also, remember that treatments may have improved since you were first diagnosed. New drugs or methods may help with your treatment or in managing side effects. In some cases, improved treatments have helped turn cancer into a chronic disease that people can manage for many years. (see complete article)



5/5/2020- Cancer is a genetic disease—that is, cancer is caused by certain changes to genes that control the way our cells function, especially how they grow and divide. Genes carry the instructions to make proteins, which do much of the work in our cells. Certain gene changes can cause cells to evade normal growth controls and become cancer. For example, some cancer-causing gene changes increase production of a protein that makes cells grow. Others result in the production of a misshapen, and therefore nonfunctional, form of a protein that normally repairs cellular damage.   Inherited genetic mutations play a major role in about 5 to 10 percent of all cancers. Researchers have associated mutations in specific genes with more than 50 hereditary cancer syndromes, which are disorders that may predispose individuals to developing certain cancers. Genetic tests for hereditary cancer syndromes can tell whether a person from a family that shows signs of such a syndrome has one of these mutations. These tests can also show whether family members without obvious disease have inherited the same mutation as a family member who carries a cancer-associated mutation. (See complete article)





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