My Cancer Story
I was the healthiest kid you've ever met. Truly. Not so much as a cold. Ever.
In eighth grade, I went to see Dr. Krikorian for a physical. Swollen glands? I was never sick. Thick neck? Oh, I'm a swimmer.
CT scans and biopsies overrode the swimmer diagnosis. I had widely metastatic papillary thyroid cancer. At age 13.
Unusual. Unexpected. And highly unwelcome three years after my Mom's cancer battle.
There's no way in one blog I can totally illustrate my personal experience with cancer. It will unfold in many future blogs. It isn't something I dwell on, but I will not deny it is a part of who I am today.
I do want to introduce some things that are relevant to this blog and my experience as a nurse and Mom.
It was a shock being diagnosed with cancer. Even as a 13 year old, it completely changed my developing self perception.
Never doubt that children with cancer LOVE the attention that is doused upon them. I balanced my anguish over my family's unhappiness with my newfound celebrity for something over which I had no control.
At that point, cancer was kind of "fun". My surgeon told me that of all the bad pennies, thyroid cancer was an "ok" penny. He was mostly right.
My surgery was OK, definitely harder on my mom. In 1985, I had a thyroidectomy and modified radical neck at Columbia Presbyterian Hospital. Due to the AIDs crisis at that time, blood transfusions were only given in life threatening situations. I was anemic and constipated, but alive and ready to go home.
THIS IS A CRITICAL POINT TO ACKNOWLEDGE. While I was hospitalized post surgery, I met an amazing representative of goodness, Betsy Keuhne. Betsy was THE nurse I still want to be. The one who knew what to do about everything, always with a dose of compassion. She took care of me and my Mom and I never felt insecure. There's no greater gift a nurse can deliver.
At the time, I thought the worst was behind me. A seven hour surgery and I was back at school in three weeks. I didn't understand the power of the thyroid. They removed it. They didn't tell me they weren't going to replace it with medicine for several months because they wanted to scan me for metastatic disease.
(In 2015, thyroid cancer is handled very differently. Remember, I was diagnosed in 1985. I am equally thrilled by the advances and humbled by the age of my disease.)
Without getting more medical than necessary, metastatic thyroid cancer was and is treated with radioactive iodine. It is given in the form of a drink and it makes the recipient radioactive. What this meant for me was six months after my surgery and eight months after that, I was placed in isolation until I became "un-radioactive". I was a young teenager in isolation in a hospital in the South Bronx. My poor mom had to sit in a chair out in the hall just to see me. I was very sick and the nurses there were unwilling to be near me enough to give me so much as clean sheets or my meals.
I actually wrote my college essay about this experience and living with the smell of the "can", which was the receptacle for everything I had touched - or puked on. There will be more on this experience later.
What was most unfortunate for me, the vain teenager I was, happened to be that every time I needed to be scanned for metastatic disease, I had to go off of my thyroid replacement medicine. I gained weight. I got depressed. I felt weird. And there wasn't a damn thing I could do about it.
In today's world, we don't do that to thyroid patients any more. New medication allows for scanning without complete T4 deprivation. Viva la research!
When I got married, I was advised to go through this arcane scanning process one more time before I embarked on baby making. Whether I had a recurrence or just an identification of some residual disease, I needed more treatment. My situation was somewhat unusual and I had to return to the Big Apple to meet my hero, Dr. James Hurley, aka the "Thyroid Cowboy". Again, more on this experience later.
Too late to make a long story short. Today I live on a hearty dose of thyroid replacement and feel healthier than ever. There are old crusty "ground glass" tumors in my lungs that will probably never mount any kind of effort against me. I could be more compliant with follow up but given the treatment I have had, I leave a lot of specialists scratching their heads.
I wanted to share my story because cancer has shaped who I am and how I nurse. While I wouldn't wish cancer on anyone, I value the fact that I understand how cancer rolls a grenade into a family and pulls the pin. I know what it is like to wish you what feels like the years you have spent in waiting rooms back. I remember the catch in your throat that comes when the doctor calls.
My survivable cancer experience can perhaps best be summarized by another brilliant, University of Richmond, cancer survivor and writer, Kelly Corrigan. Kelly recently posted the following which eloquently summarizes what I have felt for the past thirty years:
"There are many things I wouldn't wish on my worst enemy - untreatable depression, chronic back pain, estrangement. Cancer, at least the kind that comes and goes, is not one of them. I often say that I am glad to have had the cancer. Given the choice, though I didn't know it at the time, I would now choose cancer over another year of good, though largely unappreciated, health........
.......... So I was in the war but not for long and I didn't see much action. I wear the uniform of a veteran, I have scars, kids look up to me, but I didn't lose anything, except maybe a bit of naivete. Truth is, I got more out than I put in. You won't believe me if you haven't been there. You'll think I am being modest or brave or plucky. But if you've been through your own bout with disease you know just what I mean.....
......Everyone has a story of crisis - about a barrier that fell, a line that disappeared, an acquaintance that became a confidante. But you and I both know it is hard to get there- to that sacred space- when you're driving carpool to the baseball game in Almeada that might be called for rain and you've left your hot coffee on the counter because you ran back in to get your kid's glove even though you promised yourself you were gonna stop saving him and start exposing him to natural consequences. That's a world that does not make us bigger; that's the every day world that makes us feel insignificant and peripheral, even extraneous. The world of illness is singular; everyone matters there and no one ever forgets that. I suspect that is why we sometimes hover around the edges of affliction, talking about the latest catastrophe at pick up or drop off, reading memoirs, watching 17 seasons of ER. Because that is where our humanity is. And that's how we remember that the bodies we live in- the bodies that are astonishing and resilient but still fragile and flawed and easily smashed to pieces- eventually breakdown, and so it is that we remember that there is no time for nonsense and we must get busy with loving each other better. Now."
Thank you, Kelly. And thank you, Cancer.