A routine mammogram in July 2015, led to a diagnostic mammogram and breast ultrasound, which led to a biopsy. I had been to the doctor’s office so many times for these follow-up tests that I just wanted to hear the result over the phone. Whatever the result was, I’d go from there.
The result was metastatic breast cancer (MBC) – or stage 4 – and my breast cancer had spread to my hip.
I had never had breast cancer before and was diligent about my annual mammograms. As a hospice nurse, I always took good care of my health. The diagnosis was a hard pill to swallow.
Being a strong person, I knew I’d just plow through it. My daughter was pregnant at the time, and I wanted to live ‘till December to see my grandson, Trey, born.
The first round of treatment for my MBC has kept the cancer from spreading, but it was harsh on my body. Two years into my diagnosis, my family moved to a new state, and I started another job as a hospice nurse. Feeling short of breath and experiencing chest pains one day, I went to the Emergency Room where I learned I had a blood clot in my left lung.
I hadn’t been at the job long enough to qualify for short-term disability, so when I stopped working, I lost my insurance, my income and all of my resources. I also had to continue my breast cancer treatment and pay for it – but how?
I applied for Social Security Disability Insurance (SSDI) and found out two weeks later I qualified. It was a relief, but there was a catch. There’s a five-month waiting period to receive benefits. I prayed every day I would live five more months and my disease wouldn’t spread.
There’s no way to know how long anyone can live with metastatic breast cancer. For patients like me who are diagnosed with de novo MBC, meaning the disease is the most advanced stage at the time of initial diagnosis, we’re told we have about 24 to 36 months to live. I really couldn’t wait five months, but I didn’t have any other options.
In another disappointing discovery, I learned I also qualified for Medicare, but again had to wait 24 months to receive those benefits. If you put this all into context, you can see that some of us aren’t going to make it through the waiting periods. The wait times are too long. If our life spans are only 24 to 36 months, we shouldn’t have to wait at all.
I did what it took to find resources and support so I could pay the mortgage and my medical bills while I was waiting to receive federal benefits. I did it so I could continue to live and enjoy time with my family. My husband and I have three children and six grandchildren. I want to see them grow up, graduate from high school, graduate from college and start their families. My life is all about making memories with them and passing down family stories. That’s what’s important to me.
People living with metastatic breast cancer can’t afford to wait for financial help. We’re all trying to make the most of the time we have and spend it with the ones we love.
We need everyone to take action today. Contact your elected officials and demand they eliminate the SSDI and Medicare waiting periods for those living with MBC.
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.
**Support for Metastatic Breast Cancer Week comes from Merck.