It’s my cancerversary…now what?

It’s my cancerversary. Is there cake? Do I get to blow out candles and make a wish? 

Do I get to celebrate when so many die daily from this disease? 

One can only imagine the mix of emotions that must accompany receiving a cancer diagnosis, especially on a day like April Fools’ Day. It’s a day typically associated with pranks and light-heartedness, yet life has a way of delivering unexpected news at the most unexpected times. 

On April 1, 2005, I was that one. While sitting in a cab to return to Detroit, following a meeting with Major League Baseball, I was anticipating how my life was about to change for good. The company I was joining was on the shortlist to get the bid for the graphics (think signage) for the All-Star game to be played in Detroit in July. 

This was going to be a BIG sale for me as a newbie in this company and I was giddy with anticipation. 

I had been through a financially devastating divorce eight years earlier, left to raise my children on my own with no alimony, and spotty child support. Our family home had been auctioned off at a Sheriff’s sale. My children’s father filed for bankruptcy, while I sold everything I could, rented a house for cash, and began the process of transitioning from a life of Surf and Turf to Fish N’ Chips. 

Finally, after eight years of scraping together a meager income, I was going to make enough money to get my children off MIChild (Michigan’s Medicaid) and subsidized school lunches. 

Until my cell phone rang.

I popped it open only to hear my OB/GYN, who delivered all five of my children delivering something very different. That news that almost always begins with “I’m sorry.  You have fill-in-the-blank cancer.” In my case, breast.  (I had my annual mammogram a few weeks earlier and received a call back to do a biopsy on some spots, which I was assured was nothing more than calcifications that come with aging.) 

Immediately I became a member of the sorority no one RUSHES to join. But once in you never want to leave: Survivor. 

My early-stage disease was unlikely to take my life but took my livelihood while I underwent two surgeries and six weeks of Monday through Friday radiation. 

For years I worried about recurrence. Sitting with other survivors at retreats or conferences amped up my anxiety as I knew the rate of recurrence was high for someone with my type of disease.  

But now it has been 19 years, and while statistically, my risk of recurrence is low, it remains a possibility. 

Which is why I am celebrating. 

Unlike tens of thousands of women who die from metastatic breast cancer, I have been able to raise all five of my children well into adulthood and welcome three grandchildren. 

I have had the privilege of improving the lives of thousands of women and a few good men in treatment for breast cancer and their families through my work with Pink Fund. 

However, I am fully cognizant that aging from a disease that is predicted to take the lives of 42, 250 women and 530 men in the US this year, is a privilege denied to many. 

And while our work at Pink Fund is impactful, 90% of recipients reported a decrease in stress levels, collaboration and research are the key to managing this disease and hopefully ending it forever. 

I am privileged to sit on the board of the National Breast Cancer Coalition as a Director. 

On March 23, Congress passed a $1.2 trillion package to fund many government operations through September 2024. Due to NBCC's advocacy, the package contained $150 million of research funding for the Department of Defense Breast Cancer Research Program (DOD BCRP). The DOD BCRP funds innovative research aimed at ending breast cancer. Over the program's life, NBCC advocates have brought about nearly $4.4 billion for research.

In May of 2020, thanks to my training through NBCC’s Project Lead, I was invited to sit as a novice consumer reviewer to help determine how $150 million in Congressionally approved research dollars might be spent.   

It was an enlightening opportunity that helped me understand just how complex breast cancer is and why though we have come so far with various treatment modalities, we have a long way to go to finding the ultimate cure.  

More recently, NBCC advocate Carey Carpenter urged Alaska senators to cosponsor the Metastatic Breast Cancer Access to Care Act. Her letter persuaded Senator Lisa Murkowski to sign on as a cosponsor, while advocates across the nation continue to educate lawmakers on why we must pass this crucial legislation.  

Individuals with metastatic breast cancer who can no longer work are entitled to Medicare coverage under Social Security Disability Insurance (SSDI). However, these patients must endure lengthy and arbitrary waiting periods for access to health care. With an average life expectancy of only three years for metastatic breast care patients, there is no time to waste.  (Source: NBCC)

We will convene May 8th in Washington DC to lobby for the passage of this bill. 

As an advocate with the National Breast Cancer Coalition, I want to see The Metastatic Breast Cancer Access to Care Act (H.R. 549, S. 663) enacted into law. This bill would waive the waiting periods and provide immediate access to those who qualify for the medication and supportive medical care they need. 

Currently, Pink Fund’s Mary Herczog Fund steps in and helps patients who have been approved to receive SSDI but are in the mandatory wait period where they cannot show any working income. These patients may receive up to $6,000 in financial support through payments to their creditors for housing, transportation, utilities, and insurance. 

Additionally, Pink Fund is a member of the Metastatic Breast Cancer Alliance, where advocates, non-profit organizations, and industry come together to address the challenges people living with metastatic disease face. We connect with a goal of making progress toward cures. 

Just last month, Pink Fund was welcomed to the American Cancer Society’s National Breast Cancer Roundtable, whose mission is to lead collective action across the nation so that every person and their support systems will know and understand breast cancer risk and screening needs, and can access timely, high-quality, and compassionate screening, diagnosis, treatment, and supportive care needed to improve their survival and quality of life. 

So today when I celebrate my 19 years of survivorship, I am celebrating the work I am privileged to perform through Pink Fund with our dedicated, compassionate staff, and our volunteers, all made possible by our donors. 

And I am celebrating ongoing advocacy to influence policy that will enhance the lives of those living with breast cancer and potentially to play a very small part in ending this disease.  

That is the wish I will make when I blow out those 19 candles on my cancerversary cake.