10/25/21

Patented Inventor


Before the pandemic, and before my wife died of hereditary cancer and broke my heart, we were avid kayakers, and on one outing I saw a need for an easy-to-use vessel to stow supplies and equipment that would not interfere with paddling or legroom. So, I invented the kaYAKtail to help solve the problem of never having enough space for dry storage of extra supplies on kayaking adventures. On October 19, 2021 my patent was awarded. Hopefully, someday, after I unpack a ton of emotional baggage from my wife's cancer battle and death, I can bring it to market.

10/2/21

Breast Cancer Awareness

This short post is a personal effort to promote the importance of breast cancer education, research, early detection, and prevention -- not only during October, which is Breast Cancer Awareness Month, but all year round.

In June my wife passed away from triple-negative metastatic breast cancer caused by an inherited BRCA2 mutation. (Read about hereditary cancer and the importance of genetic testing and family communication about inherited cancer risks in a previous post.)

Nearly 46,000 more women in the U.S. are expected to die this year from breast cancer. It is the second leading cause of cancer death in American women. So, PLEASE help save lives by learning more about research, early detection, and prevention:

Breast Cancer Research Foundation

American Cancer Society

National Breast Cancer Foundation

Living Beyond Breast Cancer

Breastcancer.org 

Susan G. Komen Foundation 

FacingOurRisk.org 

BrightPink.org.

Assess your personal risk for breast and ovarian cancer here: www.assessyourrisk.org/

Supporting a Friend with Cancer -- www.100Actsoflove.com

This post, and my previous post on hereditary cancer, are both dedicated to my beautiful and beloved wife, Donna. A world-class educator, author, Grand Canyon hiker, loving mother, and my best friend. No one should suffer and die from a preventable cancer.


The loss happens in time, in fact a moment, but its aftermath lasts a lifetime.
-- Elisabeth K├╝bler-Ross

  

9/25/21

National Hereditary Cancer Week and National Previvor Day

National Hereditary Cancer Week is a yearly event that begins of the last Sunday in September and ends the first Saturday in October. National Previvor Day occurs on the Wednesday of that week.
BRCA awareness and previvor ribbon
BRCA Awareness and Previvor Ribbon

The overwhelming grief of losing a loved one to a preventable cancer caused by an inherited genetic mutation is unbearable. Hopefully the information here will help numerous individuals and families avoid the same tragic experience.

Millions of individuals and families are currently facing the challenges of treatment for hereditary breast, ovarian, endometrial, melanoma, pancreatic, colorectal, prostate, blood and other cancers. National Hereditary Cancer Week was created to share information to save lives as well as to recognize and honor those struggling against inherited genetic mutation-caused cancers. That also includes hereditary cancer survivors, previvors, and caregivers, like me.

Last week my brave daughter officially became an inherited BRCA2 mutation previvor. My beloved wife should have been a previvor too. S
adly, in June she traumatically died in my arms from metastatic breast cancer caused by an inherited BRCA2 mutation. Her incredibly courageous struggle against cancer was a nightmare journey through hell with one setback after another. Heartbreakingly, it was all preventable! Genetic testing and prophylactic surgery would have reduced her cancer risk by 95%. Unfortunately, despite a devastating family history of cancer*, the need for urgent genetic testing was never made clear to her by relatives acutely aware of a germline BRCA2 mutation several years before her cancer diagnosis. Had gene sequencing and risk information been expressly shared as soon as it was known, she would be alive and well and celebrating National Previvor Day this year with our daughter. Again, hopefully the information shared here will help other families avoid the same tragic experience.

There are numerous mutations associated with hereditary cancer, including BRCA1/2, ATM, BRIP1,CHEK2, TP53, CDK4,
PALB2, PTEN, RAD51C/D, CDK4, CDKN2A, and several others that families with a history of cancer should be aware of. And the threat of hereditary cancer is something that should be taken very seriously. Cancer is a truly evil disease. A few of the body's cells are dividing uncontrollably. It can arise quickly and spread easily throughout the body and even cross the blood-brain barrier. And it can be or become therapy-resistant. However, there are many options for lifesaving early detection and even preventing hereditary cancers.

National Hereditary Cancer Week is an excellent time to educate yourself about your family's health history -- especially if there’s a family history of cancer. And act on it! Take the information to your doctor or talk to a genetic counselor. ASAP! And show up for your family too!** Be that lifesaving hero! Sit down and talk to them. And it's not an "oh, by the way" moment. Someone's life may be at stake! Openly, emphatically, and persistently share any inherited genetic threats you might find along with all the data with all those whom might share DNA. Brothers, sisters, adult children, aunts, uncles, nieces, nephews, and cousins. All of them! You might prevent an unbearable tragedy.

To learn more about hereditary cancer or how you can help improve the lives of families and individuals facing hereditary cancer go to: FacingOurRisk.org or BrightPink.org. Assess your personal risk for breast and ovarian cancer here: www.assessyourrisk.org/

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* Draw a family health and/or cancer history pedigree chart.
(This is actually my wife's
paternal family cancer history chart! Yeah, holy sh_t!)

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**Links for information about talking to your family about health and possible cancer threats: 

Talking to Your Family About Your BRCA1 or BRCA2 Mutation

How to Share Genetic Test Results With Family

It's important to share medical information with your family

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FORCE (Facing Our Risk of Cancer Empowered) publishes educational brochures about hereditary cancer. Click here for free download info.

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My wife's tribute page at FacingOurRisk.org

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BRCA Previvor Ribbon

By the way, the BRCA Awareness & Previvor Ribbons shown in this post can be downloaded from my website, www.EducatorClips.com, for royalty-free use.

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Take time to care. A little effort and love can make a big difference. Not just in one life, but in all the lives connected to that life.  -- mark


9/24/21

Bottling Grief

 From my grief sketchbook & journal:

Grief Should be Bottled

When you have those moments of entitlement, when you feel superior, when your compassion for others wanes, when you have no empathy, when you put your own selfish needs above your loved ones’ needs, when you take all you have for granted, you take a whiff from the bottle. And it brings you to your knees.

Suddenly an unimaginable heartache hits you. Then an overwhelming fear that your world has forever changed. The bright future that you had so vividly imagined turns dark and bleak. The hopeless feeling that all the things that you held so dear have been ripped from your arms never to be embraced again. The painful guilt of missed opportunities to share your love or just simply say “I love you” sets in. And the tears flow uncontrollably.

Slowly the you regain your composure as the effects wear off. You rise up from your knees with a renewed gratitude for life. And gratefulness that it was only temporary and you thankfully will not have to carry those horrid feelings with you for the rest of your life, unlike me.

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“After sitting at countless deathbeds, I can tell you, no one pines for their houses or cars at the end of life. What is meaningful is the people whom they have loved.” – David Kessler, from the book Finding Meaning, The Sixth Stage of Grief

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A very good video about grief and closure.

7/9/21

Broken

The Wizard of Oz said, "Hearts will never be practical until they are made unbreakable."

I will be taking a long break from the drawing board and sketchbook because
my heart has been ripped from my chest and crushed and creativity drained from my soul.  In June, the love of my life and mother of my child lost her courageous fight against hereditary breast cancer and passed away peacefully (traumatically for me) in my arms.
 
My beautiful wife was a sweet and generous soul. A loving wife and nurturing mother. A world-class educator. All stolen away by an evil disease.
 
Her nearly 4-year cancer struggle was a nightmare journey through some of the darkest regions of hell for her, me (her primary caregiver), and our adult daughter.  Heartbreakingly, it was preventable.   Genetic testing and prophylactic surgery would have reduced her risk by 95%.  Unfortunately, despite a devastating family history of cancer, the need for urgent genetic testing was never made clear to her by relatives acutely aware of a germline BRCA2 mutation for many years.

Because family members too often fail at effectively communicating the seriousness of the risk and the urgency of getting tested to other family members, there is dire need for more education about and better screening for hereditary cancer risks. To learn more about hereditary cancer and how you can help improve the lives of families and individuals facing hereditary cancer go to: FacingOurRisk.org or BrightPink.org. Assess your personal risk for breast and ovarian cancer here: www.assessyourrisk.org/

Take time to care. A little effort and love can make a big difference. Not just in one life, but in all the lives connected to that life.  -- mark