The Cost of Breast Cancer: How I Coped With a Terminal Diagnosis

Nora Zelevansky
Posted

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.

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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.

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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.

  • Angie Young

    Thank you for sharing your story. You are incredibly brave and strong. Peace be with you.

  • Jennifer Osborn

    My condolences to Emily’s family. She sounds like she was a wonderful person who was taken much too soon.

  • susanjohnston

    This is a heartbreaking story but I appreciate Emily’s willingness to share it. My heart goes out to her friends and family during what must be an unspeakably difficult time.

  • Lesley Hanson

    Lesley Hanson – Trinidad and Tobago

    I think this artilce should be on the front page of every newspaper so that all can see the necessity of having Health Insurane.

  • Globetrotting Mommy

    What a wonderful story about my friend Emily. I will miss her tremendously.

  • Helene

    Great Article. I have cancer and I can relate to all the bills. I have received some help from my local hospital because my husband was layed off from his job. Emily was a very strong and brave person…..This article should help alot of people…..

  • Kat

    This is a great story–thank you for sharing. I visited Emily’s blog–what a truly special person she seems to have been.

  • Halle

    Thank you for sharing this story with us. Emily’s bravery through her fight with cancer is inspiring and touching. I hope that this story spreads far and wide. She was beyond amazing and everyone should hear her story.

  • Lena

    This is such a touching story. I was moved to tears. Thanks LearnVest for posting/sharing and my thoughts are with Emily’s family. Praying they can find some comfort in these sad days.

  • LJ

    Thank you, LearnVest for sharing the story of such a great individual. I am inspired by her hard work and dedication even in the face of such adversity.

  • Lisa

    What a beautiful way to document such a sad and scary time! Emily makes a brave decision to share something so personal and so difficult to talk about and in doing so, she helps her readers understand and appreciate another side to dealing/coping with cancer: money and preparation. I have a friend who is uninsured and dealing with her breast cancer and I know the financial side of the equation is equally as daunting as healing herself! I’m so sorry for Emiliy’s family and friends to have lost such a bright and enterprising young women. Thank you for sharing her story; it has insprired me to get involved with my own long-term health insurance options.

  • http://citygirlsherine.blogspot.com/ Sherine P

    What a story, my condolences go out to Emily’s family .
    A family friend is suffering from BC and it doesn’t look good but she fights every day! These women exemplify strength. I was going to give proceeds of my pink swarovski embellished eyewear sales (on enerjiee.com) to Susan G. Komen… but maybe the Pink Daisy Project may be my choice. I hope emily is at peace.

  • Sharon

    Condolences to Emily’s family… this story was so sad (I am crying at my desk at work right now), but I am glad that LearnVest published her story to keep a bit of Emily alive.

  • Sasha

    All I can say about this post is anyone who thinks America is the greatest country in the world is wrong. The fact that health care is equated to a luxury item in this country is disgusting. I lost my mother because of it.

    My Mom was my best friend, and the greatest person I’ve known in my life but she was unemployed and had to health insurance so she used the approach to health care that a huge amount of people are forced to rely on – ignore it and hope it goes away. It didn’t.

    By the time she couldn’t ignore it anymore and she told me she wasn’t feeling well, I took her to a doctor where they diagnosed her with stage four breast cancer. She was diagnosed in April 2008 and she died in December of that same year. Those few months of treatment completely bankrupted her.

    If we had lived in a country with socialized medicine like the rest of the civilized world, it likely would have been caught earlier, and I would probably still have a mother.

  • April

    Thank you Emily and your family for sharing. It’s something most people probably don’t even think about until it happens to them. I agree with the comment that said it should be on the front page of every newspaper as to WHY everyone needs health insurance. THIS is why.

  • Holly

    My goodness – what a moving article and blog. My condolences to Emily’s family and “entourage.” There is a lot to be learned from this article, about finances and life!

  • Molly Debroy

    This article is such an honest account of a very confusing time in Emily’s short but meaningful life. Her blog is truly her legacy. Rest in peace.

  • kgal1298

    So sad. This is also why I know people who have been doctors who choose to forgo treatment and instead spend their last days with the least amount of pain as possible and of course living because they know there is only so much time and sometimes it’s better to pass quickly than to prolong it, but in life the greatest fear we have is death. Which is also the reason with finances I’ve always been in the middle morality is just that once we’re dead does debt or riches matter? Not as much as making sure you live each day and make the most of it at least not from my view point. it’s sad she didn’t get more time though. RIP.

  • robin

    Thank you for this story. I had a lump in my breast at age 30 but I was fortunate it was benign. This could have been my story if I was not so lucky. Blessings to Emily’s family. She was a terrific person.

  • Kenishia Mais

    May Emily’s beautiful soul rest in peace. I was literally moved to tears while reading this. I tremendously thank for sharing her story. This is really a wake up call for me personally, as it relates to making further preparations for life’s happenings. Admittedly, I have never seriously thought about health or life insurance seriously until this very day, it was always a fleeting thought. Guaranteed, my weekend will be spent reminding those dearest to me how much I love and appreciate them, and finding myself good life and health insurance policies. Emily seemed to have been such a bright, cheerful and loving person – it’s apparent that the world lost a great woman much too soon.