Not enough: Getting by when metastatic breast cancer keeps you from work

November 17, 2020

In 2013, I was able to finish my Master of Arts degree in early childhood studies at the age of 51. I had been teaching for decades, but in 2010 started working with children preschool age and younger. I was excited to advance my career and over the next couple years I found roles that were better paying and more fulfilling, leading to 2015, when I was hired as a lead teacher at a local Head Start. Unfortunately, my second year at Head Start and my de novo metastatic breast cancer diagnosis began simultaneously in 2016.

Even though the administrators and managers were very understanding and accommodating my weekly scheduled chemotherapy treatments, I had to use every bit of earned time and sick time that I had accumulated. After that, any missed time was deducted from my paycheck. The amazing thing is that I only missed work because of treatment appointments and surgery to remove my ovaries in the spring, but I never took any time off because I did not feel well. That is not to say that I felt well, but living on my own, I didn’t have much choice but to work despite how I was feeling physically and emotionally.

It had been a difficult and exhausting year, but when I started my second line treatment of palbociclib (Ibrance) and letrozole (Femara and generic), I was hopeful that the next school year would be a breeze. It did not take long to realize that I was completely wrong. This treatment caused my white blood cell count to be dangerously low and the fatigue was overwhelming. I could barely drive the 12 miles home every afternoon. At the beginning of 2018, I began to prepare for the possibility that I might have to apply for disability benefits through Social Security. When a scan showed that the treatments has stopped working, I decided to retire from teaching at the end of the school year.

I applied for Social Security Disability Insurance the Monday after I ended the school year and Medicaid the next month. Then came 7 months with no income. Social Security requires a 5-month waiting period sans employment, one then becomes eligible for disability payments in the sixth month. The payments for the sixth month are given during the seventh month.

When I finally received my first disability payment in January 2018, I had a total of $200 left. I survived this crisis by taking advantage of financial grants through my cancer center and food through my local food pantry. I also graciously accepted gifts of money from my family and my church. I found it exceedingly difficult to ask for and accept help from others. I have always been very independent and determined to overcome all obstacles on my own. It took me weeks to work up the nerve to register at my local food pantry. I felt embarrassed, but the staff at the pantry were truly kind and helpful.

Once I started receiving disability, it did not take me long to realize that the small check I received was not enough to cover living expenses. I used all available financial options available: local programs to reduce heating and electricity bills, gas and food gift cards from my cancer center, and gifts from family and church friends. My furnace broke in the middle of winter, and my water meter kept freezing, leaving me without water and costing several hundred dollars to fix. When property taxes and town sewage and water costs skyrocketed, I had to make the difficult decision to sell my home. In June 2019, I moved in with my 83-year old father.

I began my third line treatment, capecitabine (Xeloda), in September 2018, and subsequent scans have shown that it is keeping my condition stable. I was feeling well during the summer of 2019 so I began looking for a job. Since I was not sure if I could work full time, I decided to find a part time job and to investigate opportunities to volunteer. I found a position teaching a preschool music class for 2 hours a week, which I thought was a great start. I was able to do something I enjoyed for a short period of time. I also began volunteering at my church’s school in the fall, and they offered to pay me to tutor students for about 3 hours per week. Unfortunately, the Department of Health and Human Services decided that 5 hours of work made me ineligible to receive Medicaid, so I had to stop tutoring in order to keep my health insurance.

At the beginning of 2020, I researched how I could get off disability so I could return to work. I was not exactly sure how I would afford health insurance without Medicaid, but in March I decided to try working at my local YMCA as a teacher for older toddlers. I had worked there years before, and they were thrilled to hire me for only 20 hours a week. I worked 10 days before COVID-19 closed workplaces around the country, including the childcare center.

In September, I was able to go back to teaching my preschool music class for an hour a week, which is all I can handle right now. Metastatic breast cancer treatments are hard on the body no matter what kind of treatment it is. In December, I will be enrolled in Medicare which will take almost $150 out of my disability check every month to pay for my health care. In addition, I will again have co-payments and a deductible.

I have no idea what to expect. I have been unable to figure out how I can get off disability and afford health insurance. I will be relying on the money from the sale of my mobile home to supplement my income for now. And on top of the financial strain, I am still trying to accept the fact that I will never be able to return to the career I love.  

Sue Cappucci, 58, was diagnosed with hormone receptor-positive, de novo metastatic breast cancer in 2016. She lives with her father and beautiful Maine coon cat, Miss Boo, in Penacook, New Hampshire.