Where I’ll Turn Next
On May 29 of this year, my 35th birthday, the nurse practitioner called to tell me a test showed that my liver enzymes had spiked. This is a possible side effect of the current chemo, so they tested it again without alarm. When the numbers remained high, my doctor called me directly, which is never a good sign: I needed a PET scan.
On June 7, I went to work but couldn’t ignore a lingering feeling of dread. I met my parents, as usual, in the lobby of the hospital before my appointment with the doctor. The results weren’t good.
The number of tumors in my liver had increased. In fact, there were so many that they couldn’t be counted, though the organ was still functioning completely. Also, the cancer had spread to my brain. The doctor suggested that I quit my job and make the most of the time I have left.
I called my boss and told her the situation and, as usual, she was beyond generous and understanding. And, after spending the next week tying up loose ends and telling my other coworkers, I left my job with an arrangement in place: I had 13 vacation days saved up and, luckily, two holidays fell during that time, so my last day at work was June 26th. I then continued to get paid for 15 business days, and my short term disability kicked in the next day to pay me $816.19 for three months. After that, my long-term disability will kick in, which pays me 43% of my former salary.
My employer continues to pay 50% of my health insurance premium until my short-term disability runs out in October. Then, I’ll go on Cobra insurance for $688.18 a month, for up to 18 months. If I’m still around then, which right now seems like a lucky position to be in, I’m not sure what I’ll do. Maybe I would be able to find a solution through Obamacare?
I am also applying for Social Security disability. I submitted the paperwork, and they’re expediting the process since I have a condition that is “expected to resolve in death,” but the wait is still three to four months.
In 2013, as of August, I have paid $2,500 in out-of-pocket costs for chemo, copays and prescriptions. Separately, I also paid a lawyer $900 to draw up my will and other paperwork.
“In life, my father always says, ‘The best way is to go through it, not around it.’ “
Right now I’m facing an additional $1,600 bill for my radiation to treat the brain tumors. Apparently, my insurance coverage changed last year and radiation therapy is no longer subject to my deductible and coinsurance limits (which I reached back in January). Now it’s subject to a 50% copay, with a limit of $100 per day, per provider. Since I had 15 days of radiation, plus the day of “planning,” I’m now being billed $1,600 on top of everything else. I’m seeing what I can do to fight it, but we’ll see. I have other more important things on my plate right now.
My doctor predicted that I had three to six months to live from the day in June I sat in his office, and he delivered the bad news. At this point, I also have cancer in my lymph nodes, abdomen, spine and chest.
I am not a bucket list kind of person. I just want to spend time with my family. I worry for them the most after I’m gone—the grief. I’m going to keep my blog, “The Bright Side: Breast Cancer at 31,” going for now too. I think that will kind of be my legacy. I started it around the time I was first diagnosed to tell my story, share information with loved ones and friends, and offer a little levity—counting boob flashes and documenting trips to the wig store once I lost hair from chemo—to something so serious.
In life, my father always says, “The best way is to go through it, not around it.” We don’t ignore my disease or pretend that this is not happening, but we don’t talk about it 24/7, either.
All said and done, there are a few lessons I’d pass on to anyone starting a similar struggle:
- Don’t be afraid to ask for help. You need it and people want to be there for you, even organizations.
- Always say thank you if you’re lucky enough to get aid. I received an extra package of T-shirts from one organization because they liked my thank-you note.
- Start your will before you have to. That’s not what you want to be dealing with when your time may be limited.
- Always look at your medical bills and explanations of benefits. You will absolutely find mistakes—I have found several discrepancies.
I knew this day would come. I just hoped it would be at least 20 years down the road, not when I’m 35.
Memorial contributions may be made in Emily’s memory to The Helen Sawaya Fund c/o Dr. Gabriel Sara, Roosevelt Hospital, 1000 Tenth Avenue, 11th Floor, New York, NY 10019 and the Pink Daisy Project.