Love, Loss, Cancer & Advocacy

Nobody should suffer and die of a preventable cancer. And no family should have to watch helplessly as a beautiful life is cruelly consumed by a heinous disease and then have to bear the nearly unbearable grief of the loss for the rest of their lives.

On a summer evening in June, I held
Donna, my beautiful wife of 40 years, in my arms as she took her last breath. As I sobbed uncontrollably, it felt as though someone had kicked me in my stomach and then reached into my chest and ripped out my already broken heart and stomped on it. Having someone you love die in your arms is not romantic. It is one of most unimaginably painful and traumatic events you could ever have to endure.

Donna was my muse, creative partner, adventure companion, co-parent, best friend, but above all, she was my true love.  Now there’s a big empty space in my life where she used to be, and my heart is forever broken. 

Donna died of triple-negative metastatic breast cancer caused by an inherited mutation in a BRCA2 gene. Her nearly 4-year cancer struggle was a nightmare journey through some of the darkest regions of hell for her, for me as her caregiver, and for my adult daughter. Yet, Donna gathered her courage and endured every cruel twist this truly evil disease threw at her. From the toxic chemotherapy, to multiple surgeries, to metastasis to the brain, to the inhuman whole-brain radiation sessions, seizures, and all the ER visits, she just never gave up.

And my heart aches knowing that none of it should have happened. Preventative surgery would have reduced her cancer risk by at least 95%. Despite a devastating family history of cancer, there was an inexcusable failure to provide gene sequencing information and expressly communicate the urgent need to be genetically tested between Donna’s relatives acutely aware of a BRCA2 mutation since 2010 and unaware family members at high risk for cancer. Had there been love, empathy, thoughtfulness, and the courage to show up and speak up, she would be alive and well and a BRCA2 mutation previvor. Again,
nobody should suffer and die of a preventable cancer!

Since my daughter also carries the mutation she inherited from her mother and is now a previvor, I have made it a personal mission to help prevent others from suffering like my wife did. Here on this page you will find links to numerous cancer resources to educate and empower all who may wonder if there may be a genetic cause for any family cancer history.

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


How to Share Genetic Test Results With Family



It's important to share medical information with your family


Do not wait to tell your family about hereditary cancer risk.


Encouraging Family Conversations About Hereditary Breast and Ovarian Cancer - YouTube Video Project


 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

 

Other Cancer Resources

National Cancer Institute


The American Childhood Cancer Organization


St. Jude's Children's Hospital


Breast Cancer Research Foundation


American Cancer Society
 

National Breast Cancer Foundation


Living Beyond Breast Cancer


Breastcancer.org 


Susan G. Komen Foundation


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


On Love and Loss at the End of Life
How may we live as richly and fully as possible at the end of our lives? How can our doctors best enable us to die with grace and dignity? Rachel Clarke is a palliative care physician who believes that individuals, not their diseases, should sit at the heart of medicine. In a hospice, grief - though painful - is the form love takes when someone dies.

__________________

My wife's memorial tribute page at FacingOurRisk.org

  If I had a flower for every time I thought of you...I could walk through my garden forever.
-- Alfred Lord Tennyson