by Stephanie Madsen, Living with Cancer
I’ve endured thousands of needle pricks, undergone painful surgeries, and have withstood innumerable grueling treatments. I’ve been sick, bald, weak, over-medicated, under-medicated, poked, prodded, pained, and simply desperate for life. I’ve been triumphant, encouraged, accomplished, fortunate, blessed, and hopeful. I’ve gained insight, wisdom, and more medical knowledge than I could have ever imagined. My perspective has flourished and evolved. I have found a depth of joy that many never will. I’ve grieved loss. I’ve suffered hardship. I’ve authentically experienced mortality. I’ve overcome. I am brave and strong and alive. Yet among those things, I am also overwhelmingly burdened.
I survived cancer, but my bank account did not.
What many never mention in the beginning of your battle is that cancer is expensive. Not designer purse expensive. Not home mortgage expensive. Not even dream vacation expensive. Cancer is life-saving expensive. And frankly, before you’re thrust into the fight of your life, you can’t fathom what expensive really means.
Before diagnosis, my husband and I were newlyweds building up our savings account. We both worked full-time jobs and lived comfortably enough to enjoy frequent date nights and yearly vacations. We were building our nest egg with dreams of purchasing our first home and expanding our family. We paid our bills on time and lived with financial peace. But then cancer happened, and soon our nest egg dwindled to mere pennies.
Surgeries, treatments, and hospital visits began invading our monthly calendar. Our mailbox began filling up with bills from surgeons, anesthesiologists, technicians, physicians, and oncologists. And what we first felt was manageable soon became overwhelming. Not only did we need to process our emotions and feelings about me being diagnosed with an extremely rare and aggressive cancer at only 25 years old, but we also needed to process how we would pay for it all. What would our insurance cover? Are these doctors in-network? How much is our copay? Have we met our deductible yet? What are the tax implications for this?
The big question was, “Can we afford to save my life?”
Soon, I had to quit working. My first surgery was a radical hysterectomy in which I was horizontally cut open from one hip to the other; to say I was in pain would be an exaggerated understatement. My initial tumor happened to be deeply embedded in my pelvis. Post-procedure, I was sore, aching, and miserable. The first surgery resulted in a week-long hospital stay. I couldn’t walk up or down the stairs for nearly two months. I couldn’t drive. I couldn’t even sit comfortably. Therefore, working my full-time job was no longer feasible. Part-time became impossible as well. We became dependent on my husband’s income and, for a short time, had to move back home to live with my family.
Since then, I’ve had three recurrences. Each fight against cancer has involved surgery and treatment. And each surgery and treatment must be paid for. In total, I’ve received four major surgeries (each involving week-long hospital stays), 55 chemotherapies, 28 consecutive radiation treatments, a port placement procedure, blood transfusions, emergency room visits, innumerable prescription medications, doctor’s visits, and CT/PET scans. Each one came with a pricetag. Cancer has literally taken us to the bank.
My husband and I have learned that life doesn’t stop when cancer begins. Rent, electricity, cable and internet, trash, car insurance, phone bills, student loans, and more needed to be paid. So we began to compartmentalize. Survival here. Payment there. We found a basket to store medical bills in until we gathered up enough courage to go through them. We found ourselves transferring money from savings until our savings account dried up. With the help of our loving family and friends, fundraisers were held and money was raised to assist us. And though prior to cancer, receiving a $10,000 check would seem like a large sum of money, it soon barely put a chip in our medical debt.
Surviving cancer as a married person who can rely on their spouse for an income has been taxing, yet there are thousands of single young adults fighting for their lives without any means to pay for it. At 29, a friend of mine was diagnosed with triple negative breast cancer. She was single, active, employed, financially stable, and living on her own. Yet, like many upon diagnosis, she quickly learned that she could not afford her increasing bills. She soon had to move back in with her family and sublet her apartment. Without money to pay for her cost of everyday living, she began to heavily rely on her credit card. Within three years, she was thousands of dollars in debt and hadn’t even paid a single medical bill. It’s a story that is all too common for many YA survivors.
YA’s with cancer are not only fighting for their lives, but they are being buried in medical debt. Having to decide whether to purchase weekly groceries or pay a recent chemotherapy bill is not a decision anyone should have to make. Even when treatment ends and a young adult is declared cancer-free, the burden of debt often remains for years to come.
I’ve been out of treatment for one year, and the bills continue to flow in. I’ve developed a fear of voicemails and unknown callers, and when my phone rings, my heart grows heavy. The reality is, like many of my fellow survivors, several of our medical bills have now gone to collection agencies and they persistently call us in hopes that we can reconcile them. My husband and I have paid thousands and thousands of dollars, and still have thousands more to go. We have found the light at the end of the tunnel and are slowly but surely recovering from cancer. The financial burden, though still present, is growing lighter.
It may sound crazy, but we’d do it all over again. We simply cannot put a pricetag on my life. And you shouldn’t either. The bills will come and the money will go. Life is too precious to be seen through the lens of a dollar sign.
Learn More About #YARally
Read Stephanie’s posts about Relationships and Sexuality, Body Image, Family Building and Recurrence
Stephanie Madsen is a writer and motivational speaker. Diagnosed with Large Cell Neuroendocrine Carcinoma of the cervix as a newlywed in her mid twenties, Stephanie is a four-time cancer survivor. Having undergone 55 chemotherapy treatments, 30 radiation therapy treatments, and four major surgeries, her experiences have allowed her to provide a unique and relatable perspective to those facing similar life challenges. Given a less than 20% chance of surviving one year from diagnosis, she is now celebrating being cancer-free.
Her blog, DerailingMyDiagnosis.com, has emerged as a beacon of hope in the worldwide cancer survivorship community. Stephanie candidly shares the highs and lows of her journey with hundreds of thousands of visitors, all the while maintaining the survivor spirit and unshakeable faith needed to thrive in an otherwise hopeless situation. Her written work has been featured on The Huffington Post, Everyday Health, Coping With Cancer, and Livestrong, and she has appeared on numerous local television and radio broadcasts as well as the Ellen DeGeneres Show. She shares her experiences with others and speaks hope at survivorship events across the country.
Stephanie lives in Denver, CO with her husband and two dogs.