Alyssa, Hodgkin Lymphoma

I will never forget the phone call from my ENT in Charlotte, NC, on November 28^th, 2023, asking my father and me if we knew what Hodgkin lymphoma was. The only thing I remember after that was my hand quivering as I wrote the words “Hodgkin lymphoma” on a piece of paper, realizing right then and there that my life would be forever changed.

At my first appointment with my ENT, he immediately suspected an infection in my parotid gland. Once again, I was prescribed antibiotics and steroids for a THIRD time to try address whatever was happening in my body. My ENT asked return for a follow-up in two weeks, and, sure enough, I was still as swollen and in as much pain as ever. The medicine wasn’t even touching what was happening inside my immune system.

At this point, my ENT was at a loss. He recommended I get a biopsy done and schedule an appointment with infectious disease as they were still set at this point that it was some sort of infection running wild on my body.

Days passed, and I was still in tremendous pain and was having the hardest time trying to schedule a biopsy. In early November 2023, I just threw in the towel and headed to the emergency room. We waited for hours, and finally when they called me back, they immediately sent me for another CT scan.

This was the first day I heard the word cancer. I remember clear as day the emergency room doctor coming into my holding room in the ER. My friend Ashley was there as my support system as my parents were many states away and she just held my hand. He told me that my CT scan showed that many of my lymph nodes were swollen and enlarged from my head down into my chest cavity and that typically when this is seen, it is some type of lymphoma.

I remember being in complete shock as I sat there and the first thing that came to my mind was straight fear and that I wanted my parents. I cried, and cried, and cried some more.

At this point, they admitted me into the hospital as they still wanted to run other blood tests to rule out any infections and other various diseases and wanted to complete the core biopsy of one of my lymph nodes.

I was in the hospital for 5 days, all my blood tests coming back negative for various infections. I was lucky enough that my mom and grandparents came down from Pennsylvania after I told them about the potential possibilities of diagnosis. I got the core biopsy done before I was released.

When I was released, the doctor on my floor of the hospital STILL believed it was NOT cancer – and that my body was dealing with some sort of autoimmune disease. We did not have the results of my core biopsy yet, and based off my other symptoms she was flabbergasted when we brought up the emergency room doctors being positive that it was cancer. She recommended I go see a rheumatologist once discharged.

I remember the day I was discharged from the hospital. I knew in my gut that something was wrong, and the lack of answers was BEYOND frustrating. I just curled up into my mom and cried for a solid 30 minutes. At this point, I was sick of being in so much pain all the time and just wanted answers good or bad.

Here’s another kicker. It took THREE weeks to get any sort of results from the core biopsy. I got the biopsy done on November 8^th, and the results came November 28^th. I called my ENT about every other day to PLEASE get these people moving on it. I couldn’t believe something so serious could take this long. Frustration was setting in.

At this point, I went back home to Pennsylvania to stay with my parents for two weeks for Thanksgiving. After November 28^th, when I got that call, I never left Pennsylvania.

My ENT told me that they were 90% sure that I had Hodgkin lymphoma, but that I would need a second biopsy to confirm and to take action going forward. They would need to take an entire lymph node for testing. This would confirm the diagnosis and let us know what type of Hodgkin lymphoma I have. I was weirdly relieved to have some sort of answer, but still unsettled as they still were not 100% sure after all this time.

My ENT in Charlotte had some connections at the University of Pennsylvania in Philadelphia as he did his residency there, and said if I wanted to stay home in Pennsylvania, he could recommend and make a call to a friend of his who was an ENT there to do my second biopsy. I looked at my dad in that moment, tears in his eyes, and all he said was absolutely. Keep in mind, Philadelphia is a 2.5 hour drive from where my parents are located, and that this would be a big commitment if I did in fact have cancer to continuously make this drive throughout whatever my treatment was to be.

The next week, I was in Philadelphia for the very first time (of many) to meet with my new ENT. He wasted no time in getting my second biopsy scheduled two days out and was ready to get this ball rolling. I was beyond relieved. December 15, 2023, I got a lymph node removed on the right, backside of my neck and on December 19^th it was confirmed – I had nodular sclerosis Hodgkin lymphoma. After the diagnosis, I was finally able to meet with an oncologist at Penn and take action towards getting myself healthy again and get a PET scan in order to see where the active cancer cells were located in my body.

Long story short, all I can recommend to you all out there reading this is ADVOCATE ADVOCATE ADVOCATE for your health. Only you know your body, and if you feel something is wrong, something is most likely wrong. Do not give up. Keep pushing. You will get answers. As I am an adolescent and young adult (AYA) patient, it is so much harder for us to get diagnosed as the narrative always seems to be “You’re too young for cancer.” But nobody is too young for cancer. Nobody at all.

My health journey took a 180 when I started going to Penn Medicine. Everything happened so fast, and I couldn’t be more grateful that I was able to go to such a prestigious cancer research hospital for my care.

I met with my oncologist on December 18^th. She told me all about Hodgkin lymphoma and my specific subtype. She also went into detail about what my next steps would be. I would need to attack this cancer with a generalized systemic approach which would include 6 rounds of chemo and immunotherapy, each round consisting of two infusions 15 days apart. This would span over 6 months and hopefully then, I would be cancer-free.

The words chemotherapy scared me. All I had known at that time about chemotherapy is what was portrayed in shows and movies and stories from other people. The unknown has always scared me, but never like this. It baffled me that to get better, I literally had to poison myself and kill my cells (healthy and cancerous). We also discussed my PET scan results.

I will never forget the moment I opened my first PET scan results on MyChart. (I also recommend you don’t do this until you talk to your doctor!!). I was lit up like a Christmas tree. I had cancer from the lymph nodes located on the backside of my head, all the way down into my femur bone and femur bone marrow, including my spleen. I was stage 4, which again, is scary to hear.

My oncologist had a plan. And I trusted her. For anyone out there going through something similar, the trust in your team is everything. If you’re feeling uneasy or uncomfortable, you should seek a second opinion or a different oncologist. This is literally your life. You want someone you can trust and feel confident in that will fight for you.

My biggest advice during active treatment is find a community, find a support system that understands what you’re going through or have already gone through it.

As soon as one drop touched my bloodstream, I went into anaphylactic shock and had to be stabbed with an Epipen. What a way to start my first infusion day. I was terrified and scared after that, but what other choice did I have but to continue and start my chemo and immunotherapy bags?

After that for the most part, my infusions went smoothly. The only other complication I had was when I got my chest port put in, I got a skin infection and treatment had to be delayed until that subsided. I never want to say that I was lucky, but my side effects during treatment felt that way. I was mostly hit with massive fatigue, mouth sores, bone aches from the wonderful white blood cell injections, and hair loss from Doxorubicin, or what I liked to call the red devil. I also had a flare-up of my allergic asthma which needed to be treated.

My biggest advice during active treatment is to find a community, find a support system that understands what you’re going through or have already gone through it. Programs like Imerman Angels helped me, and I now have two rockstar ladies who are also stage 4 Hodgkin lymphoma survivors as friends.

What I wish someone had told me was that active treatment is the easiest part. What comes after treatment is a whole other ball game.

On June 10^th, 2024, I had my final infusion, and on July 15^th, I had my post-treatment PET scan and was told I was officially cancer-free and in remission.

Navigating being a cancer survivor is hard and nobody tells you that. Yes, we are grateful to be alive and getting a second chance on life, but you must figure out who you are all over again and find a “new” normal with your self-identity being so completely changed from a traumatic event such as cancer. I am still navigating it.

I am so thankful for the research and community, like that done and supported by the Lymphoma Research Foundation, for lymphoma patients, survivors and caregivers and even for the individuals we’ve lost to help continue lowering the mortality rate and make active treatment more bearable to go through.  

I had my first follow-up scan on September 23, 2024, and was told everything is stable and I am still in remission. This will continue for five years. Five years I will need to constantly be reminded about my mortality and the chance, even if small, there could be something that shows out that could completely change my life yet again.

My best advice – take everything day by day. Minute by minute if you can. Living in the present and enjoying this second chance of life I have is the only option. I am so thankful for the research and community, like that done and supported by the Lymphoma Research Foundation, for lymphoma patients, survivors, and caregivers and even for the individuals we’ve lost to help continue lowering the mortality rate and make active treatment more bearable to go through.  

I currently have my own place with my ESA goldendoodle puppy named Emily (named after my oncologist) and just went back to work this week, so I am slowly, but surely finding my footing and life post-cancer diagnosis. The research powered by the Lymphoma Research Foundation will continue allowing AYA cancer patients, like me, to get a second chance to make this life all that we want and more.