Clinical Trials
If I Could Turn Back Time
South Sound Cancer CARE Foundation video interview
Question 4: What did clinical trials and research mean to you before - and what do they mean to you now?
In January 2016, my then oncologist swiveled in his stool, looked at me and said, “So we have this clinical trial that I believe you would qualify for…” and I looked at him like he had lost his mind.
This was right after the “staging of my cancer” and soon after I saw the results of my PET Scan, which lit up like a Christmas tree and brought my sisters, Aaron and me to our knees. I was stunned. He was offering me a trial? This cancer, my cancer, was spread throughout my ENTIRE body. It was busy feasting on my bones, knocking on my liver, clawing its way into my right lung, and he was offering me a trial?
I thought to myself, “What kind of madness was this? Was he kidding? I don’t have time for trying. I am dying. I am not a lab rat, or a thing to be poked and prodded, injected and observed, a mere source for investigation.” I had no time nor interest in hearing anything about any type of “experimental” treatment.
A clinical trial…I pictured myself perched in a hospital bed, being administered random medicines, injections, and pills, as white-coated clinicians scrutinized my reactions diligently making notes in their files. A mere test subject. Being newly diagnosed and having just met this new-to-me oncologist, we did not know each other. Yet here we were talking about my life and whether or not it had any value left in it.
“Surely,” I heard him thinking, “with the little time you have remaining, you must be interested in contributing to finding a cure?”
A clinical trial…to him I was expendable…a mere curiosity. I had lived my life and now should give back to society in the form of research. Research that would most likely torture and ultimately kill me in a very short time. His query ignited pure, appalling panic deep within the folds of my amygdala.
When the word cancer became a label fixed to me, it was quickly followed by the use of the adjective metastastatic. I had metastatic breast cancer, and clinical trials meant nothing more to me than an expedited death. They meant the health care industry was not interested in caring for me but was interested in experimenting on me. I was expendable, and this oncologist was merely reinforcing what I thought I knew. Afterall, I was Stage IV. And to me a Stage IV cancer of any type, meant death was breaking down my door.
I NEVER asked how long I had to live. I could not bear the thought of hearing anything tied to a calculated number of days, and a clinical trial meant I had a 50/50 chance of receiving a placebo. I did not have time to play a game of chance.
What I did know, without any hesitancy: I was not ready to die.
I turned to him and boldly exclaimed, “Hell no, I am not interested in any clinical trial. I have no time to waste with ‘trials’. I want the most direct line of treatment you have. Give me the damn chemo. I am ready to guzzle a gallon of it right now. I am serious. Let’s get on it. I want to start tomorrow.”
He heard me; he listened.
And the next day, I began my first line of chemotherapy fondly called The Red Devil (and boy was it evil).
Fast forward 6.5 years to July 2022, and in the words of Cher, “If I could turn back time/If I could find a way.”
What I know now, but did not know then, is my reaction to the words “clinical trail” was driven by blind fear, panic and complete ignorance. I knew I did not want to die, and I felt desperate. I was petrified. I had never broken a bone, let alone sprained an ankle, and here I was having the worst conversation in my entire life with an oncologist who I had just met, a complete stranger,
and I did not want to die.
Had I chosen differently…well, there is not point in that.
What I know now is access to clinical trials mean access to a process that is highly regulated, highly innovative and highly personal. While standard, approved lines of treatment mean my insurance will cover the cost, the cost is oftentimes very large. Conversations end up revolving around quality versus quantity. Gains versus losses. A good balance of the treatment requiring a heavy lift without a complete crush; treatments that are effective as well as “tolerable” for the patient. “Tolerable” … sometimes I wonder if the word means different things to me and my oncologist.
The side effects of standard forms of treatment are weighty, and they are debilitating. Whereas clinical trials mean access to the latest and greatest medicines, access to treatments that are research-based and targeted to the specific manner in which my cancer genes mutate and express themselves. Clinical trials mean innovative treatments that are often times the least invasive and a far more gentle form of cancer care.
Rather than death, they mean life.
Rather than fear, they inspire hope.
Nothing remains the same for long, and in the practice of medicine, change is inevitable. The research being invested in cancer care, and being part of the process of change, is what clinical trials now mean to me.