Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
As patients, we need to remember that we may not wear the white coat, but we definitely wear the pants in the doctor-patient relationship
A Facebook memory popped up on my feed from four years ago, and it was one that reminded me of the time I put my big girl pants on for the first time as a patient and fired my oncologist.
Two years into treatment, I moved to a new state and expected a smooth transition to a new clinic where my new doctor would pick up where I had left off. I knew I would be continuing on with the same chemotherapy plan, and knew what to expect as I got hooked back up to the bag under his care. Only things didn't continue on as expected, and I didn't tolerate these continuing rounds of chemo as well as I had before.
Unlike my first 12 rounds on this chemo cocktail, my nausea wasn't controlled with an assortment of antiemetic IV meds given to me in advance. My beloved anti-nausea pills weren't even making a dent in my ability to take the edge off the paralyzing sickness. All I could do was stay motionless in bed for days, eventually throwing up with no regard for any of the long-lasting antiemetic drugs that were pumped into me before my infusion.
With each round, I would meet with my new oncologist and explain that I'd never been so nauseated or thrown up so much. I didn't understand how I had completed 12 rounds of this regimen under the care of a different oncologist with completely managed side effects, yet now I found myself so sick I just laid in bed for days gripping a bowl.
With each clinic visit, he'd prescribe a new anti-nausea drug, and upon my return, I'd tell him I was sicker than before. I even asked for a patch I knew worked wonders for others, holding up my hands to illustrate something the size of a small notepad. When I went to pick up the script for this patch I had described, I was shocked to see it was a small Band-Aid fit to be placed behind the ear for motion sickness.
What made him think that what I described as the size of a checkbook somehow translated into a patch the size of a quarter? I then realized he was not listening to me. For weeks, I had gone in telling him that I couldn't stop throwing up despite previously never throwing up before on this regimen. And despite my pleas for help, he was merely prescribing drugs to hush me up rather than actively listening to the distress I was in and trying to solve it.
I went in for my next appointment and quit. My quality of life was suffering, and I no longer wanted to continue treatment with nausea and vomiting that couldn't be controlled. He was taken back, but his telling reply shocked me: "Well I could give you the anti-nausea drug Emend, but I usually save that for the patients on the really harsh chemo."
I was appalled. I wasn't sure why he didn't consider vomiting for days after an infusion to be "really harsh," especially when it was something that I didn't even come close to experiencing before with this chemo cocktail. I went home and pulled out my records from my previous oncologist, and there in his treatment plan for me it said "Emend." And that explained it all. The reason I had managed my side effects so well for the first 12 rounds was because of a magical antiemetic drug called Emend —one that my current oncologist wasn't giving me, despite coming in week after week complaining of excessive vomiting.
Why did it take me quitting for him to finally pay attention to me? And why he withheld a drug that could have vastly changed the way I tolerated chemo reflected his inability to be a consummate provider. I didn't need to answer my own questions because I had already arranged to transfer my care to a new oncologist.
That Facebook post from four years ago read like this: "Just a reminder to all the patients out there. Health care is a business and you are their customer. If you don't like the way you're being treated, you are free to take your business elsewhere."
As patients, we need to remember that we may not wear the white coat, but we definitely wear the pants in the doctor-patient relationship. Do not be afraid to walk away and seek out care in greener pastures. I can assure you there are amazing doctors out there who want to listen and provide you the best care they can.