*This is the long, unedited version of yesterday’s blog post for MD Anderson’s Cancerwise blog
In January of 2006, I was diagnosed with Chronic Myeloid Leukemia (CML). I never would have imagined that I’d be a twenty-four year old living with cancer.
CML is, well, chronic. When you first learn to manage a chronic disease, you realize that it’s not always the medical side of things that’s burdensome. It’s often the unexpected cost of managing a chronic illness that can become a toll.
You won’t read that in the doctor’s notes. That’s just something I had to learn the hard way.
Nobody ever tells you how difficult it will be to manage a chronic illness after you’re first diagnosed. As a naive-to-the-world twenty-four year old I was no exception.
“That will be $125.” Picking up prescriptions was always a guessing game. I never knew how insurance worked. All I knew was that I had it.
“That seems like a lot of money,” I replied. “The original cost of the medicine, without insurance, is $3,400,” she responded. “Dollars?” I asked.
I handed over my debit card as fast as I could.
I was taking Gleevec, 400 mg daily. One pill a day. “Easy enough,” I thought. In fact, it was easy, for the first seven to eight months. Then I began to compromise. I had to.
It became easier to pay for my medication every third paycheck as opposed to every second. Over time, I felt ashamed, guilty, and embarrassed that I wasn’t taking medication every day, but I was pretty broke and well, young and dumb.
For the most part, stretching one month of medication into two months worked well for me. Physically, I felt good. In fact, I’d often forget that I had leukemia altogether.
Like my friends, I wanted to be young, carefree and not have to worry about managing an chronic illness. Naturally, I often pushed my diagnosis to the side.
Instead of being deathly afraid of what could happen if I didn’t manage my illness correctly, I became deathly afraid of what could happen if I managed my illness correctly but never experienced the fullness of my youth. I was somehow too immature, naive, or a combination of both to realize that I needed to figure out a way to manage both.
But they don’t give you that playbook when you walk out of the doctor’s office.
The longer I stretched out my medicine, the less guilty I became. After all, blood tests and routine checkups continued to reveal that, at least at a very superficial level, I was “normal.” I didn’t understand that at a very cellular level, the inconsistency was enabling the leukemia cells to evolve.
I started to base my illness on how I felt physically, as opposed to how everything was measuring up scientifically. I embraced the invincibility that provided more financial flexibility.
Living two or three weeks without medicine was not uncommon. My mind had betrayed my body, and my body would soon betray my mind.
In August of 2008, I moved to Dallas, Texas for a promotion. Soon after I started feeling physical symptoms of CML, I searched for a new oncologist. It had been months since I had taken any medication.
I contacted my oncologist’s office and informed them that I had moved. I asked the nurse if she could find a provider in my area. She said she’d call me back as soon as she found a doctor. She called back two days later.
“We’re having some trouble finding an oncologist,” she said. “We’ve been in contact with a couple of places but they won’t accept you as a patient because of your history of non-adherence. I’ll keep trying!”
I had no idea that I could even be refused as a patient. I also had no idea that I was considered “non-adherent.”
Sure, I had missed a couple of medical appointments. And yes, I spent an afternoon in the emergency room as a result of not taking my medication. But it was never a case of having medicine and not taking it. Instead, it was a matter of not being able to afford it in the first place.
My world was turned upside down. After years of fighting hard to be “normal,” I was anything but. I was labeled. Not only did I have leukemia, my medical chart carried a stigma. I was non-adherent.
A few days after being rejected, I was accepted by Southwestern Medical Center in Dallas. It was there that I faced the realities of my illness and coordinated plans to talk with the social worker about how I could receive the financial help that I needed. It was a big step in the right direction.
I felt empowered to be my own advocate and had to accept all of my previous mistakes. All it took was a little assistance.
It wasn’t until my time at UT Southwestern that I truly understood the significance of patient adherence, particularly with young adults. I wish I had known all along.
It may have cured the false belief that I was controlling my situation when, in fact, I wasn’t. Now, I can’t help to wonder if my adherence mistakes lead to the discovery of a t315i mutation within my cells. That mutation prevent all known FDA-approved medications from binding to leukemia cells.
Perhaps I’ll never know.
What I do know is that there’s no greater issue to tackle in the field of medicine than patient adherence. As a chronic patient, I understand the struggles of having good intentions without the proper game plan to carry them forward.
Trying to navigate cancer on your own is like walking into the gym and trying to lift a weight you’ve never lifted before just to impress the prettiest girl in the room. Without a spotter or someone to help you lift the weight, it will soon come crashing down on you.
Nobody is capable of lifting the weight of cancer on their own.