“I wish someone told me that cancer treatment doesn’t end after chemotherapy.”

WHATNEXT is grateful to present this article that was written by and shared with permission from Kouichi Shirayanagi, a survivor of Hodgkin’s Lymphoma. Kouichi originally shared his story at Elephants & Tea, the only magazine written for and by the AYA cancer community telling their story in their own words.

It was March 3, 2022 and I was checking my online chart to see what was going on with me.

I went through a sonogram, a biopsy, and various other blood tests to check out the large growth on my neck. “The immunophenotypic features of the large, atypical cells are consistent with the diagnosis of classic Hodgkin lymphoma,” the words hit me like a train running me over at 100 miles an hour.

I had Stage II cancer! I was about to embark on the long and never-ending journey of being a cancer patient. I had to schedule many trips to Manhattan for 12 rounds of chemotherapy treatment. After I had a port surgically installed on my chest, I would have ABVD drip injected into my veins over the course of four-hour sessions hooked up to an IV every other Friday for the next six months. My pee turned bright red, the color of Doxorubicin. My diet consisted of mostly soups because I could not digest anything else. I had painful aversions to sunlight. My body needed constant hydration, and I took pills for nausea three or four times a day.

My oncologist had told me at diagnosis that all my vital signs were great, and he could tell I spent years taking great care of my health. I made sure to always eat right. I got out and walked around the Coney Island Boardwalk near my house whenever I could. My apartment has a gym where I regularly worked out during the months the weather in New York City did not permit me to go out. I love nature and have been an avid hiker and cross-country runner. I have always avoided the adult vices of excess alcohol, unprescribed drugs, and sexual intercourse with multiple partners. I had regular doctor’s check-ups twice a year.

What did I do to deserve cancer?

Unfortunately, unlike a cold or the flu there is no clear definitive cause of Hodgkin’s lymphoma. My body had large cells that mutated in a crude way, and no one could tell me why.

One thing about getting treated for cancer is that you can’t help but feel infinite gratitude for the healthcare workers who save your life. I am alive today because doctors and nurses did their jobs and made sure I survived a disease that is fatal 10% of the time.

However, two years later I am still feeling a lot of chronic pain.

My nervous system is still shattered. I have neuropathy from the tips of my fingers to the ends of my feet going up and down my spine. I must take Duloxetine for the constant pain. Also, I must often massage myself with cream just to temporarily relieve the pain. Pain generates stress and I do everything I can to relieve the extra stress. Usually that consists of eating different fruits in season or large bowls of ice cream.

I’ve struggled with fatigue similar to what I had when I was first diagnosed. No matter how much sleep I get the night before, at about 2pm-3pm I often need to take a mid-day nap for at least one hour. When I tried to work, I would drink two Red Bull energy drinks to get me through the day but that hurt my concentration and wrecked my nerves.

Worst of all, I have short term memory loss where I forget key details of things that I once remembered so vividly. My wife will tell me I need to go to the grocery store and without an extensive list I won’t remember what we need. Dates and times can be a blur to me if I don’t write appointments down. I took an online continuing education course where I was always present and paying attention but would watch reruns of the classes on YouTube and hear things twice like I was hearing them for the first time.

It is all very frustrating because I wanted my life back as quickly as possible after I was diagnosed with cancer. I had such a rich and fulfilled life and so much I wanted to achieve. I have a wonderfully talented wife who I have been married to for the past nine years. My seven-year-old son keeps me inspired to always teach him new things. My neighborhood of Coney Island, Brooklyn keeps me civically engaged and I still enjoy helping others. I want to live my life to the fullest and not live with long-term pain. My medications help my condition, but I often live with off-and-on numbing sensations that don’t easily go away.

Despite my problems, I’m determined to live the best life possible because I’m only given one.

When will my cancer related illness go away for good? I don’t know. But I know I am now living with a new normal and hope it changes soon.

To read more of Tamron’s and many other’s stories living with cancer, please go to the Elephants & Tea site here.

cancer Elephants & Tea Hodgkin's lymphoma

Last modified: February 26, 2025