1/19/22

Secondary Losses

On June 26, 2021, I lost my beloved wife, Donna, to hereditary cancer. When you lose your soul mate of 40 years, you lose more than just their physical presence, you suffer so many secondary losses -- so many of the small things and little memories that made life together so special.

The word bereave comes from the Old English word, befearfian, which means to "deprive, take away, or be robbed." And that is what cancer and death does, it robs the cancer patient and their family of so many of those precious little moments that are often taken for granted.

Over next few months I will be sharing many thoughts and little drawings from my grief sketchbook of some of the little things stolen away that my beloved wife and I will never share together again. Maybe you can relate, or maybe it will just give you pause to reflect on your own life and how precious the ordinary moments of life are.




1/17/22

Five Thoughtful Minutes Could have Saved a Life

Yesterday I started sorting through numerous notebooks filled with dozens and dozens of medical reports that my wife got during her nearly 4-years of  treatment for hereditary cancer. All the details of CT, MRI, and PET scans, countless blood draws, multiple surgeries, and numerous chemotherapy schedules. Items I could not touch for months because of all the painful memories of watching what she had to go through. And as I started sorting through all the paperwork a mix of anger and soul-crushing heartache set in as I thought how just five minutes of a relative’s time could have saved my wife from suffering and dying of a preventable cancer.

Five minutes. That’s all it would have taken for the gene sequencing and cancer risk information to be gathered and shared and the immediate need for genetic testing to be explicitly expressed to my wife and her siblings. And there was a seven year span between when the germline mutation was discovered and when my wife's cancer was diagnosed. Just five short minutes out of seven years would have stop years of suffering and a needless death. Five minutes. Five short minutes!


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 kaYAKtailtm 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 with the assistance of my patent lawyer and licensing company.

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, National Previvor Day, and How to Prevent a Tragic Death

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! Because of HIPAA rules, there is currently no effective way for doctors to be alerted to potential familial genetic mutation risks for cancer for their patients, it often falls to family members affected by germline BRCA mutations to spread the word. Unfortunately, in Donna's case, despite a devastating family history of cancer, family members acutely aware of a pathogenic BRCA2 mutation for years failed to effectively communicated the seriousness of the risk. Had gene sequencing and familial cancer risk information been expressly conveyed 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/
(
Please note: The Assess Your Risk quiz is moving to a brand new home in Winter 2021! The quiz will be temporarily offline.)

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* Draw a family health and/or cancer history pedigree chart.


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

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

 

FacingOurRisk.org
Facing Our Risk of Cancer Empowered or FORCE.
FORCE's mission is to improve the lives of individuals and families facing hereditary cancer.

 

BrightPink.org.
Bright Pink's mission is to accelerate, deepen, and expand the impact of life-saving breast and ovarian health interventions.

 

Kintalk
Helping families by providing free education, support and help finding early detection and genetics services.

 

BRCAStrong
To alleviate the emotional and financial burdens of women facing breast and/or ovarian cancer (regardless of genetic predisposition) through advocacy, direct assistance, empowerment and events.


  Talking to Your Family About Your BRCA1 or BRCA2 Mutation
Share test results, letters from your doctor or genetic counselor, or other information you received about your mutation with your family. Giving family members information about your specific genetic mutation helps their healthcare providers know exactly which test to use.



How to Share Genetic Test Results With Family



It's important to share medical information with your family





 All in the Family: The Importance of Talking About Hereditary Cancer



Talking About Your Family History of Cancer -- Bring Your Brave

 

Hereditary Breast and Ovarian Cancer Syndrome

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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.