Finding Refuge in Cancerland
Meet our first of two recipients of the Maureen Clarke Grant!
My name is Colleen. I'm a 37-year-old licensed clinical social worker and live in Brooklyn, New York with my husband and our dachshund, Penny. I'm originally from Pennsylvania and most of my family still lives there. At 35, my life changed when I was diagnosed with breast cancer. I endured a year and a half of surgeries and treatment. The hardest part, however, was learning that due to my hormone positive cancer, it would be too risky for me to carry a child. So with this grant, I hope to pursue surrogacy--an option which was illegal in NY state until Governor Cuomo's recent reversal!
Being in Cancerland is often a confusing, topsy-turvy roller coaster of emotions and management of symptoms. Some days nearly break your heart, but this is when you need a finely tuned dark sense of humor the most.
When I was diagnosed, I already had a trip booked to New Orleans. I had to begin treatment right away and obviously couldn’t get on a plane and start drinking Hurricanes. After securing an appointment with a surgeon, I began making calls to get my money back for the house we rented. I spoke to someone in the rental company’s customer service department and was instructed to take a picture of a document proving I had an illness and couldn’t travel. I took out one such letter, on my cancer center’s letterhead, and texted it to the stranger waiting on the other end of the phone. “Oh yes, I see. I’m sorry you have THE CANCER, ma’am.” Not the shingles or the flu, but THE Cancer. I was REALLY scared, especially in those early months, but that interaction still made me chuckle.
When I attended my first support group for young cancer patients, I sat in a room filled with men and women all under age 40. Looking around, I could see that we were in various stages of hair/low hair/no hair, and the same went for morale. The oncology social worker running the group started off with an ice breaker: “Let’s go around the circle and say something fun we did this summer. I jumped out of an airplane! Okay, you’re next.” And NEXT was a woman who had a stem cell transplant in contact isolation a few months prior. I had to laugh— it was so tone deaf. I wanted so badly to respond with “Patch Adams performed at my bedside,” but that’s not the sort of response that makes friends.
It was clear that not everyone was cut out to work in oncology. However, I developed such a sweet, respectful relationship with the nurses at my infusion center. Some were younger than me, while others were veterans with over 30 years of experience. One of my favorite older nurses was Russian. She always called me “honey” and “sweetheart” — despite being a proud supporter of the Me Too movement, I accepted any small comfort when hours of harsh chemo was being administered. This nurse spent her 20s working in the Soviet Union. As she covered me in warm blankets, she told tales of supply shortages overseas, being forced to disinfect and then sharpen IV needles in order to reuse them. Another nurse I lovingly nicknamed the “Vein Whisperer.” She almost always got my tired vein on the first stick. Her skills were in high demand, so they usually didn’t send the A Team to my room first. After other nurses tried and failed, I was often forced to call out if the Vein Whisperer was working that day. She was the MVP of my IVs.
It wasn’t fun getting stuck repeatedly, but the hardest part of treatment came two to three days later, when the side effects hit. One such day I was laying on the couch in the throes of what I termed the “dizzy drunks.” I never threw up from chemo, but I would get the spins like I drank a pitcher of jungle juice but had zero fun at the party. I couldn’t do much but lay there and protect my nose from any gag-inducing odors like burnt toast or scented soap.
During this time, I also became sensitive to bright colors, light, and sound. Our apartment walls are thin, and my upstairs neighbor (who knew I was off work undergoing months of chemo) started playing what sounded like experimental demon music. “I don’t know what you’re playing up there, but it sounds like Frank Zappa. Can you please turn it down?!” I whimpered into his voicemail, as the whirly repetitive sounds burrowed into my psyche.
And here’s the thing — my upstairs neighbor is nice, thoughtful even. But what I’ve found to be true in Cancerland is that even the most well-meaning people do or say thoughtless things pretty often. It’s hard not to take it personally. But communities like Humor Beats Cancer provide a small refuge from that, where our struggles are acknowledged while validating that some elements of our experience can be, at times, funny.
(Photo by Dorota Micali Photography)