It was three months before my 24th birthday when I heard the words “Hodgkin’s lymphoma” and my world shattered into a million pieces.
I only knew about Hodgkin’s disease from "Party of Five" or comedies teasing Hodgkin’s as the “good cancer.” Let me tell you, there is no such thing. No cancer is good. When I was diagnosed in 2009, I was immediately thrust into a club I never wanted to be a member of.
April 17, 2009: I remember everything about that Friday. After having a needle biopsy earlier in the week, I went for a CT scan at the recommendation of a family friend who is an oncologist. If it wasn’t for her, I would’ve been running around in circles, seeing the wrong doctors, taking pointless antibiotics, and growing a tumor far larger than it was when found. But back to April 17 -- I walked into the imaging center with my parents and nervously got in the machine. I remember wondering if the technicians knew immediately if I had cancer or not, and trying to read their faces when I got up from the test. They told me the results would be read in a week.
When I got out of the test, my mom said she had spoken to her oncologist friend and already had something to tell me. I found out I had cancer in the parking lot of an imaging center next to an Applebee’s. It was as awful and awkward as it sounds. My parents held back tears, and I immediately felt sick to my stomach and screamed, “Am I going to die? I don’t want to die!” Passersby must’ve thought this was quite a sight -- a grown woman crying and throwing a temper tantrum in a parking lot.
I drove home with my dad, silent, unable to speak. All of my friends knew I was going for a biopsy. I called my best friend, Lesley, while my dad pumped gas. I slouched down in the seat, and for the first time, told someone: I have cancer. The exact words were incoherent screams through sobs: “Lesley… it is... it is… oh god, it is…” That was all I said, and she immediately knew.
The next hours were a blur, and family and friends came over. We drove around for three hours that night -- my parents, my grandma and I -- because I literally could not sit still. I remember wondering how much time I had left. Luckily, our doctor friend came over and explained Hodgkin’s is prevalent in young adults, has a high cure rate, and that I would need to move home from New York in order to be treated and allow my parents to take care of me.
As I mentioned earlier, this woman saved my life. When I'd found a mysterious lump on my neck two weeks earlier, my friends laughed when I asked if it was cancer. My parents told me to visit my doctor in New York. A lymph node infection, I was told. Take antibiotics for five days and I would be good as new. Wrong! It only grew, and as it grew, my paranoia was growing with it. The doctors were stumped and I was told to go see ear, nose and throat specialists, or just keep waiting. Luckily, my parents had dinner with their oncologist friend after my first useless appointment and told them to bring me home because it sounded like lymphoma. I hated this woman for giving weight to my paranoid cancer thoughts, but ultimately she saved my life.
The morning after I got the news, I threw out the clothes I'd been wearing when I'd heard my diagnosis. I never wanted to wear that damn sweater and leggings again. I didn’t want anything except my old life. After a sleepless night and nightmares I can’t even speak of, it was time to get on the stoic train and prep for surgery.
Surgery turned into six months of chemotherapy (12 rounds), six specialized infusions, and 30 radiation treatments. Being radiated every single day for 30 days is no joke. As awful as chemotherapy is, radiation is more the “I just got hit by a bus” feeling. Because the dosage is cumulative (like chemo), each day feels worse than the day before. My throat felt like it was a volcano; ice cream was heavenly for my achy mouth. Having your third-to-last radiation treatment before Thanksgiving is horrible. Really, it should be illegal. I couldn’t taste anything or swallow properly enough to enjoy the meal. I cried all day. Was I really thankful for this horrible day if I couldn’t eat my grandmother’s famous challah stuffing?!
As my treatment ended, the immediate effects went away. What they didn’t tell me was that I would have chemo burn marks all over my arms and back, IV track marks that made it look like I was a drug addict, radiation tattoos on my chest, and horrible neuropathy and numbness issues in my hands and feet that still exist five years later. I’ve learned to wear my scars and tattoos with pride. Yes, I would love not to have scars and discoloration on my arms or scratch marks from before I was diagnosed when I woke up at night thinking I was going to itch to death (an early symptom of Hodgkin’s that only doctors know), but they have made me into the woman I am.
This disease that I would never wish for made me fall in love with exercise, go back to school for my MSW degree, and work in a cancer center so that I can help the millions of people out there just like me. In fact, I work in the very same hospital I was treated in five years ago. Day in and day out I walk through the same doors I walked through for treatments. I pass my nurses in the hallway, and the doctors that saved my life are now my colleagues.
When I went back to New York, the job was the same, but I was different. I couldn’t work without thinking about the lack of resources for the forgotten 18- to 40-year-olds in the cancer world. This is the only age group where life expectancy has remained stagnant after treatment, and the group that does not participate in clinical trials that could advance medicine to amazing heights.
I thought about the way people say “treatment is over, move on” and how that it’s not that simple. I actually find that to be an extremely insensitive and insulting phrase, even many years later. Life is not the same. You are not the same. Besides the physical trauma the body endures, the mental shifts and post-traumatic stress is downright debilitating. I found myself not relating to my friends; it was hard to act like a normal 25-year-old on a Saturday night when your body shuts down at 4 p.m. and you can’t drink alcohol the way you used to.
My constant desire in being involved in young adult cancer advocacy groups and trying to help people like me led me to apply to the University of Connecticut’s Masters of Social Work program. I was ready for a new chapter: one that would allow me to move back home and put my recent experiences to use.
Cancer is never over. You may be disease-free but it remains in your memory forever. Instead of fixating on every “what if” scenario that could happen as I grow older, I want to use my past to help people live stronger, healthier and more empowered lives post-treatment. I work on survivorship care plans and treatment summaries for our patients, psychosocial research, distress screening and other program implementation in our healthcare system, and support groups for 25- to 40-year-olds.
I hope the work I embark on daily helps hundreds and thousands of those people who had the misfortune of hearing “you have cancer,” just like me. On April 17, 2009, I didn’t think I would ever see another year, let alone this one; the year I am going to turn 30, marry my future husband, and have my whole life ahead of me.