How Amy Marks Ensures Patients Know "There's More To Come And It's Something Beautiful."
Written by Amy Marks
My cancer journey began when my husband noticed small nodules protruding from my neck. They felt like hard, tiny peas. The area would swell up to golf ball size and recede. Cancer didn’t cross our minds. No one on either side of my family as far back as I know had cancer. We decided to go to our wonderful family doctor to find out if the nodules were normal, infected, or what. After the doctor felt my neck, the look on his face was a mixture of compassion and complete sickness. He asked a series of questions and referred me to a surgeon to get a biopsy to be evaluated.
This surgeon was convinced it was not cancer. “Cancer doesn’t act like this.” “They’re merely reactive lymph nodes.” He proceeded to send me on a wild goose chase of different doctors and different tests. He insisted that I needed antibiotics. This went on for a few months and my husband and I decided to go back to our family doctor.
The area on my neck was swollen again, this time to 6 cm in diameter. We were referred to an ear, nose, and throat doctor. He conducted an exam and immediately ordered a PET scan. The results showed up like a yellow highlighter marker — cancer detected. This doctor insisted on removing the lymph nodes. Thankfully, he was trained to be mindful of where the nodes were situated and knew how to carefully move the nerve so I wouldn’t lose the use of my arm.
He sent the specimen to the lab. When sent it to another lab, and another. I’m surprised there was any tissue left by the time it got to its final destination: the National Institutes of Health (NIH). Ten days later, the doctor called me at home. He said that I had waited long enough. It was confirmed to be Peripheral T-Cell Lymphoma (NOS).
He led us to my incredible oncologist. She recommended a second opinion which took us to the Simon Cancer Center. That was a surreal experience. People were in different stages of different types of cancer. I wandered up to the office keeping my vision in a tunnel.
Why am I here? Is this me?
The doctors there confirmed my diagnosis. Although it’s relatively rare, I’m grateful to say there was a protocol for that type of cancer. I had to have an internal port surgically inserted. The drugs used for my type of cancer were too harsh for my veins to tolerate.
The first day of chemo was a thirteen-hour marathon. I was allergic to many of the solutions used to convey the medication. After the first solution was started, my son and my nurse sat forward extremely concerned and asked if I was alright. Apparently, my face had turned beet red. The journey to correct that course began. I was put on so much Benadryl, and a ton of steroids to combat the allergies, but my doctor said that we needed to proceed. We had to test out and get through each of the meds in the series. The nurses were amazing—staying after their shift to get me through. I was a mess—so frustrated, so sick, and so tired. That evening my husband took me home.
We had to organize and set alarms for all the steroids and the medication for nausea, not to mention my own regular medication. In total, I had 14 alarms set. I was allergic to a couple of the anti-nausea meds and had to make phone calls in the middle of the night and take Benedryl to combat those. The next morning, I had projectile vomiting. My husband lovingly cleaned that up and we were back to round two of three the next morning. I had 6 rounds of chemo, 3 days of infusions, every 21 days. Also, there was Neulasta administered by securing the medical device to my arm. This was to boost my white blood cells.
The oncologist and the nurses were the best. They absolutely have a calling on their lives. They advocated for me, loved my family, made us laugh, and really listened to me when I was clearly not doing well.
I have to say how grateful I am for my husband and my two sons. We all broke into our roles. My husband was everything: in addition to going to his job he was my medical note taker, chauffeur, therapist, medical assistant, chef, etc. Our older son was the researcher. He gathered information and shared my progress with our family and friends. Our younger son was my emotional support human. He came home to take care of me. He made grilled cheese sandwiches for me and gave my husband the peace of mind to leave me while he went to work.
My friends called, brought food, and let me vent. They all held my hand at chemo and beyond. My job was to simply get better. My hair fell out. I progressively got sicker. My daily goal was to get to the bathroom and back into bed. I would gradually get better only to have to repeat the process of chemotherapy. The doctor got my meds situated and things became somewhat smoother. I would sob on my husband’s shoulder before each new round. “I don’t want to do this anymore.” He would gently persuade me and off we’d go back to chemo with my special blanket made by a kind coworker and my bag of supplies to entertain me for the six-hour period of infusion. I usually slept. Gradually, we weathered each session.
I would sometimes visit the cancer center that was situated behind the old Bloomington Hospital (Olcott Center - before CSC was in town). I went to the head wrapping class. I’m not a girly girl and not very fussy, so learning to wear a scarf with my chemo cap was not only comfortable, it was helpful with my dignity. I was amazed and deeply touched by the support of the staff and the lovely social worker.
Slowly, I kicked cancer’s butt. I rang that bell. The day the doctor told me that “there is no evidence of disease” was strange. I had fully believed that this would kill me. I had the notion that cancer always equaled and ended in death. Through my faith, I had a peace about that. But, I had to wrap my mind around the prospect of living past cancer. Therefore, I had to begin the trek of healing, believing in a future, increasing my activities, growing my hair back. I still have to get CT scans (scan-xiety is real!) and visit with my oncologist, but we’re in a good place now. I still get nervous, but I know that there’s a whole community that selflessly supported me.
My hobby is creating greeting cards. Monthly I create and donate cards to be tucked into the comfort kits that CSC distributes to new cancer patients. I do this as a quiet, loving gesture to brighten a day and let the patients know that they are thought of. I enclose a poem (not my own) that struck my core.
Remember that you are more than skin and bones. You are a thousand stories of before. One thousand stories of potential. One thousand stories you’ve yet to see and know and feel and breathe. There’s more to come and it’s something beautiful. ~Victoria Erickson