Hodgkin lymphoma (HL)
Unfortunately, my story begins around the time everyone seems to want to forget, 2020. The beginning was great! I was a senior in high school with the hopes of becoming a physical therapist. I had also just received a three-year Army ROTC scholarship! I was involved in sports, clubs, and other extracurriculars. I had been accepted to the University of Pittsburgh and could not wait to go. March 13 rolled around, and suddenly high school was over. No more sports, no more clubs, no more graduation. I was devastated but also distracted because my pediatrician told me I needed to get a random lymph node on my neck checked out.
After finding a swollen lymph node on my neck, I was given a script for labs, then an ultrasound, then a CT, and eventually, I found myself in an oncologist's office. I remember sitting in the waiting room with my mom ― two very healthy-looking people and I had a head of hair down to my waist ― and we looked at each other thinking, “What on earth are we doing here?” Little did we know at that time that I would be spending hours in this office. Come May, I was the one getting the cancer call, the call nobody, much less an 18-year-old kid, thinks they’re going to get. Everything after that happened pretty fast. I got a PET scan to determine the stage, 4a, my port was placed (the device in my chest to administer chemo and other meds), and chemo started June 8.
I will never forget the morning of my very first chemo appointment. I was a wreck. I didn’t want to go, but I knew I needed to. I was anxious, crying, stressed, and feeling 1,000 other things. I was only allowed to have one parent with me because COVID was also going on through all this. So, I went to say bye to my dad, and I looked at him with tears in my eyes, “I don’t want to go.” And he just looks right back at me and says, “There is nothing more in this world I want you to do right now than go to this appointment.” THIS stuck with me.
So, it began. I had a total of 12 chemo infusions, one every other week, and a PET scan after six to see if the treatment was working. After just my first infusion my hair started falling out ― the thing everyone dreads. And being a young woman, I was devastated. I hated getting up off a chair and just seeing piles of my hair everywhere. It got to the point my mom would vacuum the couch so I didn’t have to see it. However, it was inevitable, so why not make the most of it? I couldn’t take it anymore and needed to stop seeing and feeling all my hair fall out, so I decided to dye it. I called some of my friends, and we made a whole day out of it! I dyed it hot pink and left it for a day or two then cut it in all kinds of styles I would never dream of doing. But, like I said before, it’s coming out anyway, so why not have some fun with it?
Finally, I reached my halfway point, six infusions in, and PET scan #2 comes around. It was clear! My treatment was working, and all that was left was to finish out chemo. The last few infusions were all a blur, but they were finally done on November 9! I rang the bell, got my port out, had one last PET scan, and packed for a much-needed family ski trip. On December 16, I had a follow-up with my oncologist to look at the PET and discuss what monitoring for the next few years looked like. However, not all that happened. Instead, I was told my PET was no longer clear, and I needed yet another biopsy. Surgery was scheduled the very next day, and my family left after. While on our ski trip, just before Christmas, I got the cancer call again. Unfortunately, the next steps were not crystal clear due to various treatment options. Fortunately, my doctor told us we could finish our trip and reevaluate after the holidays, so that’s what we did. We all tried to forget for a while and feel like a normal family.
Once we were back home, everything picked up again. I had appointments almost every day with various oncologists all telling me my options. I had multiple hospitals proposing different treatment plans, and it was up to me to decide what life-saving treatment I wanted. What a task to put on the shoulders of a 19-year-old. After countless appointments and discussions about treatment with my family. we finally decided on a plan ― six infusions of immunotherapy, a bone marrow transplant, and radiation. Before starting all that though, I had to figure out if I wanted kids. What!?
A bone marrow transplant, or BMT, has a high chance of leaving an individual infertile, so I had to decide now if I ever wanted kids. This became just another thing to add to the ever-growing list of things I never dreamed I would have to deal with at 19. This was a no-brainer though. I love kids, and I can’t wait to have some of my own, so the egg freezing process began. Immunotherapy was pushed back a few weeks in order to complete all the steps of freezing eggs for later use.
I also started classes again for the spring semester (all online), keeping me semi-distracted through it all. Once March rolled around, I began immunotherapy, and honestly, this was great! It was about an hour of infusion every other week, and I had NO SYMPTOMS from it. Amazing. I love seeing The Leukemia & Lymphoma Society (LLS) post about new immunotherapy approved for treatment because it was 100 times better than chemo in every aspect. I dream of a day it can be used more.
I finally completed the six infusions, got a PET, and started the BMT prep process. After many appointments and info packets, I was admitted to the inpatient unit for the actual transplant. So, what is a BMT? Well, there are two types, but the gist of it is you will get 3-7(ish) days of chemo, and the goal of it is to wipe out all the cancer for one, but it also kills your blood cells and bone marrow. This is done because oftentimes an individual’s bone marrow is diseased and needs to be “reset” in a sense. After the chemo days, it's transplant day. You receive stem cells from a matched donor or, in my case, myself. Fear not if you’re confused; it is a very detailed process, but the bottom line is you get lots of chemo that kills a whole bunch of cells then spend the rest of the time recovering from it.
I was in the hospital for a total of 25 days and started radiation just three weeks after I was discharged. I felt like crap during most of my time in the hospital, and to be honest, I don’t remember some of it because I was on countless meds and very sick. I lost some weight from not being able to keep food down and lack of appetite which became such a problem that I temporarily had a nasogastric tube in (NG) to provide me with some nutrition. Finally, I recovered, and radiation picked up. I went in every weekday for 2½ weeks and, honestly, this was easy! I had no side effects, so it was a painless experience. By the time I finished radiation, it was the end of August, and all my friends, once again, were leaving for school. I, once again, was stuck.
BMTs kill a whole lot of cells, and these include cells in your immune system. Unfortunately, this left me very immunocompromised, so although I was done with all my treatment, I was at an increased likelihood of getting sick. I also still had many follow-up appointments, so most of my time was still spent at the hospital. Another side effect of BMTs is losing all the “data” from previous vaccines, including the ones you typically receive as a baby. My immune system essentially became equivalent to that of a newborn baby. I had a vaccine schedule for when I could get all of them again; there were days I would go into the clinic and get five shots at once because there were so many to catch up on!
I should’ve been in school during all of this (well, taking classes online), however, I decided to take the semester off. While in my hospital bed towards the end of my BMT stay, I decided I wanted to become a pediatric oncology nurse. I became best friends with my nurses, and they somehow impacted my life enough to make me want to spend every day in a place where I felt my absolute worst. I will never stop thanking them for providing care incredible enough to convince me to become a nurse myself.
With this revelation and career path change, I had to get to work figuring out what my next education steps were. I was still a student at the University of Pittsburgh and loved it there, so I hoped to stay. I drafted an email to the Dean of the School of Nursing at Pitt and explained my situation, asking if there was any chance I could transfer in. Luckily, this was an option! I was not able to take classes online this fall, but in the spring I would be given permission to take the freshman nursing coursework. Since I had the fall semester off, I was determined to find something to fill it.
I never lost interest in exercise/physical therapy, and my mom was looking into online classes to become a certified personal trainer. I thought this was a great idea and started the classes as well! On top of this, I started up my own business. As a coping mechanism, I began making blankets because it was fun, kept my hands busy, and my mind distracted. However, I didn't just want to sell blankets, I wanted to help others who were in my place. So, for every three blankets I sell, I donate one to someone impacted by cancer. This could be a patient, caregiver, medical professional, or even a facility that supports those individuals (ex. Ronald McDonald House). I loved every bit of this and even partnered with a local crafts store to get discounted yarn since I was ordering in such bulk!
Before I knew it, it was finally time to actually go to school. I was registered for nursing classes and ecstatic to start them. It felt good to be a kid again and deal with normal kid problems. I met a few people on campus who also had cancer, and we are still best friends to this day! Now, in 2023, my community has grown. I’m still hoping to become a pediatric oncology nurse and have never been happier. Yes, classes are hard, and I’m likely stressed 11/10 times, but I’m here. I’m in school and learning. I’m doing things I couldn’t do two years ago, and it’s awesome.
What’s The Leukemia & Lymphoma Society (LLS) got to do with all of this though? I’m so glad you asked! LLS has been a consistent supporter throughout everything. I first got involved by turning to them for education on what Hodgkin lymphoma (HL) actually was. After signing up for newsletters and getting deeper in, I was fortunate enough to have resources sent to me at no cost. They even sent my parents a “de-stress” package! This was all great, but I was still on the outskirts of their true impact. Since then, I have helped with LLS Visionaries of the Year, Student Visionaries of the Year in both Maryland and Pittsburgh and participated in Light The Night (LTN). To see the impact on a much larger scale and to be a part of where the money that supports families like mine is incredible.
As I mentioned before, I received immunotherapy, a drug LLS currently promotes and helps research. This treatment was the easiest of all. And even better, it worked. I am honored to see both sides of this amazing organization, and I hope it continues to impact cancer patients like myself until the day this horrible disease is cured.