In August 2013, I found a lump in my breast. It came out of nowhere. I have no family history, I don’t have the BRCA gene. But, at age 29, I had an eight month old baby - and stage II breast cancer.
Over the next six months, I took FMLA and (unpaid) administrative leave from my work so I could juggle treatment and motherhood. After six rounds of chemo, a bilateral mastectomy, and 6 weeks of radiation treatment, I returned to work – only to learn three months later that the cancer had spread to my bones. My company said I needed to wait at least another three months to be able to use FMLA again, but that was time I didn’t have. After going back on administrative leave, I was later forced to terminate my employment.
I’m coming up now on my two years since my second diagnosis. My cancer has stayed in my bones, which is good, but with Stage IV cancer, treatment is always changing. I’m at the hospital for chemo every three weeks, plus scans, plus doctor’s appointments – it’s been impossible to go back to work. I get Social Security, but it is not nearly what I was making before. My husband works, but living on one income is almost impossible in this country. And he doesn’t get any paid sick days, so it’s very hard for him to take time to help me when I am sick.
Being younger and having this happen to you – we never had a chance to build up a savings account or 401K. We were planning to buy a house, and we had to use all those savings for medical bills. Sometimes it feels like we are totally scrambling and losing everything because of something I couldn’t control.
It would have meant everything to have paid family leave, or for my husband to have it now. We wouldn’t have to worry so much about cutting things for our daughter. Eloise is 3, but she can’t go to preschool because we have to pay medical bills. If my job had paid family leave, maybe I wouldn’t have had to choose between treatment and my job. I wanted to find a way to continue to work. Even if I had paid family leave just that first time I was diagnosed, maybe we would have had enough money to buy a house. We could have had child care. Our savings could still be intact.
People ask me all the time “Well, don’t you have insurance?” They don’t realize that you’re still paying out of pocket for lots of tests, lots of treatment, and a lot of your time is spent out of work and in doctor’s offices. Insurance is great, but it can only take you so far. I want to work, not to be on disability. I want to have the option of maintaining a normal life while living with chronic – yes, eventually it will be terminal, but so far it’s been chronic – illness. I would love to continue to work because my family would be in a much different financial situation and I had a really good job.
I just don’t you think you should have to go bankrupt because you’re sick.
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