Out of network: My story of cancer, cure, and the need for reassurance
By Andrea Grabanski
Master's student, Online MPH in Population Health and Sciences
This article was originally developed for PH510: Communication Fundamentals, in the Population Health Studies online MPH program. Learn more about the storytelling series from class instructor, William D. Lopez.
“This is an old man’s disease!” Dr. Fairchild exclaimed.
I sat next to my mother in an uncomfortable, stiff chair in the exam room that afternoon. My half-sister, Kim, 35 at the time, was leaning against the wall; I could sense her eyes shifting and blinking, yet she was unable to find any words. Processing what the reproductive oncologist was saying to us, I felt numb. Even though I had just started my senior year of undergrad at the University of Wisconsin, where I had loads of science classes under my belt, I didn’t have any explanation why, at the age of 21, I was diagnosed with stage 4, non-Hodgkin’s Lymphoma (NHL).
The year was 2000, and it really was rare at the time for younger people to be diagnosed with that type of blood cancer. You’d hear about Hodgkin’s Lymphoma more often, and people surviving it. This was the one you didn’t want. And it was aggressive at that. The tumor the size of a grapefruit had spread to my bones.
I reminded Dr. Fairchild that my father had died at age 30 of a sarcoma, and that his mother had died at age 36 from what was, in the 1960s, identified only as “stomach cancer.” Statistical likelihood aside, I wanted the doctor to know that my family had a habit of developing unexplainable cancers.
As I gazed out the University of Minnesota clinic’s window, everything began to fade. I found myself wishing I was back at my college in Madison, not here getting treatment in Minneapolis. But as a college student, I had health insurance coverage from my mother, which required me to seek care in the same state she worked. Mom was already helping me with tuition, so there was no chance we’d be paying for health care visits or hospital stays out of network.
While my life was in Madison, my healthcare was in Minneapolis, so to Minneapolis I went, 269 miles away. My life as I knew it came to a screeching halt–I wasn’t sure how long this detour was going to take, or if I’d even pull through this.
Just days before the diagnosis, I went into surgery for a better sample of the tumor taking residence in my abdomen. Dr. Fairchild had looked at the pathology results after a CT-guided biopsy and wasn’t confident in what the lab had labeled the malignancy. The dominant pathology was called “dysgerminoma.” I had never heard of that type of cancer, but I wouldn’t have any reason to doubt the results. I had been simply told, “it’s kind of like the female version of testicular cancer but it all relates to the germ cells when you’re developing as a zygote.” Having sat in biology lectures, those terms made sense to me.
I remember the surgery taking place being on an October morning and not waking up in my room until the evening. When I woke up, I saw that I had 22 staples in a line straight down from my belly button. I had no idea what Dr. Fairchild had found inside my abdomen or if anything had been removed.
As I gazed out the window of my post-op room in Minneapolis, busy freshmen walked to and from their dormitories just outside my windows. What I wouldn’t give to be back in Madison, starting my senior year of college. But I wasn’t insured there. I was insured here.
The staff nurse walked into my room, mispronounced my name, and asked how I was feeling. I was groggy but eager for information. “Do you know if they took anything out?” I asked her about the surgery. “Yeah, I think they did,” she replied. Because I was told the exploratory surgery could involve removing anything problematic, I asked what I thought was a logical follow-up question. “Did they remove an ovary?” Again, she said casually, “Yeah, I think they did.” She proceeded to leave the room. I lay there, propped up on pillows, alone with my thoughts, and away from the friends and support network I had developed in Madison.
The next time a visiting doctor popped his head into my room at the hospital, he let us know that, contrary to what the nurse had told me, no ovaries had been removed. The medical team removed some lymph nodes, but due to how tumors entangle themselves in the human body, Dr. Fairchild didn’t disturb much else. My sister, Kim, asked why they didn’t remove the tumor. We were told because it was close to so many organs, removing a grapefruit sized tumor would leave a large abscess, leading to other systemic issues in the future.
The next day, I started radiation in hopes of shrinking the tumor and relieving the shooting pains I had now spreading to my right leg. I had been on a morphine drip while in the hospital to help with the bone pain and used crutches to avoid putting weight on that leg. Within days, I began chemotherapy and needed my mother to hold a little pressure on my laparotomy incision when I vomited.
It was a very rough start, but I completed six cycles of chemotherapy and 14 radiation treatments — about the maximum amount a person can have.
I felt accomplished and relieved when I finished my chemotherapy infusion on February 7th. I followed up my final treatment with a small order of McDonald’s french fries — a craving I’ve never had in the 24 years since, on the drive home.
I soon found out I was in remission. I went on to have an autologous stem cell transplant on May 15th, 2001, requiring more chemotherapy. Due to my previous radiation amount, the medical team opted for high-dose chemotherapy to wipe things out and restart my immune system.
Twenty-four years ago, the billed value of my transplant cost $500,000. While I’m grateful that I was younger and covered by my mother’s insurance plan, the coverage of the plan meant that yet again I would be spending more time in Minneapolis, away from my college home. The insurance companies hold a lot of power when deciding if a life-saving treatment will be approved.ٰ
The arbitrary nature of health care access and insurance feels like a game of roulette. While I am still grateful 24 years later that the transplant was successful, what would it look like for insurance coverage to prioritize not just medical treatment, but the presence of people to support you while you go through that treatment?
Lead image: Photo of author and her two half-siblings after her hair started growing in. Photo taken by author's mother.
About the author
Andrea Grabanski is master's student in the online MPH program in Population and Health Sciences at the University of Michigan School of Public Health. She works to improve access
for patients needing cardiac medical devices and volunteers with grassroots organization
that supports local farms, as well as fostering with a canine rescue organization.
Outside of her passions for nutritious foods and loving on animals, she helps raise
the vibrations of others as a fitness and yoga instructor. She currently lives outside
Minneapolis and travels to the ocean when possible.
