I was in my second to last year of nursing school and just over one year into my marriage when the headaches became too much to bear. I was 21. I was tired all of the time, but I was working in busy ER and going to class when I wasn't at work. I had lost some weight, but I had been exercising more and getting a lot of while working in the ER. I had a cough, but they tell you that you'll be sick a lot when you're in nursing school. Unfortunately, I happened to touch my neck one day while studying with classmates for a big exam. There was a lump there that I had never felt before. It was small, at around the size of a grape, but it was not normal. I gave it a couple of weeks to go away in case it was related to an illness I had acquired at work or school, but it stayed. When my primary care doctor felt my neck, the look on his face clued me in that he was extremely concerned.
I had seen him frequently over the past few months for my headaches, each time getting a normal workup aside from an inflammatory marker increasing with each lab drawn. He and his nurse practitioner were taking me seriously, as I had no history of headaches or other health issues. I was waking up each morning with a headache and keeping a steady one throughout every day. No medications were working. My head CT was clear. Everything seemed fine until my doctor checked my neck.
He immediately ordered a CT of my chest that showed a 7 cm mediastinal mass. I'll never forget the feeling of reading my own scan report and seeing the words "lymphoma is considered most likely." My heart sank as I scrolled through internet articles about lymphoma and the treatments. Thankfully, the Blood Cancer United website provided me with really reassuring statistics, but I still had no choice but to do chemotherapy. Before we could start treatment, we had to confirm the diagnosis.
The diagnostic process was long and tough. It took two separate procedures to get enough tissue to have a definite diagnosis of Hodgkin lymphoma (HL). The night after the first biopsy, I became short of breath and had to be admitted to the ICU as I now had blood clots in my lungs. The admission wasn't terrible though, as it helped to rush my second biopsy and to get established with an oncologist (the best ever, honestly. Hi Dave!!!).
I was discharged then promptly started chemo just a couple of days later. At my first chemo, I had a reaction to one of the nausea medications. The reaction made it impossible for me to breathe, so my team decided to stop the medication and not try it again. That's when things got real. Chemo was not fine. I was not fine. This was going to suck.
It did suck. Every two weeks when I finally felt close-ish to normal, I walked into a building that I knew I was going to leave feeling 100 pounds heavier and 100 times worse. For days after treatment, my entire body ached like I was bruised all over. Chemo drained me in ways that I did not know were possible. My treatment plan was called ABVD. This was a mix of drugs with known side effects such as pulmonary fibrosis and heart failure. However, I couldn't worry about the long-term effects because the short-term ones occupied my mind as I lay in the dark for hours on end waiting for the throbbing to stop in my head or the jolts of pain in my bones to settle. The only reason I made it through each day was my support system of my husband, my family, some really special people from school, and a few people from the community who stepped up to support me when I couldn't support myself.
Financially, going from two incomes to one was a really big change. Thankfully, my parents covered my medical bills, and the Blood Cancer United offered financial support for day-to-day expenses. Looking back, I realize how much each and every dollar made a difference on our ability to get through the day.
Somehow, 6 months went by, and I completed 12 treatments of chemo while finishing nursing school. I finished treatment at the end of March, 2020. This was a historically bad time for everyone on the entire planet due to the COVID-19 pandemic, but it took an extreme toll on me, as the "new normal" I had pushed forward for was ripped away just as it was outside of my grasp. I had planned to get to start doing clinicals with sicker patients. I had tickets to see Taylor Swift (my absolute favorite singer) in Atlanta. I was going to leave this thing behind me and never look back. None of that happened, and my life now had a new imminent danger; I could be killed by a brand new virus with no real treatment options. Unfortunately, I was then provided with even more time to sit and think about everything that had happened and what could happen. That was very bad. I spent a lot of time on the Blood Cancer United website reading any information I could about lymphoma then using that information to do more research. Knowing the statistics helped calm me when I felt the spiral of relapse-related fears come along.
The Blood Cancer United also provided financial support in the form of grants during this time to cancer patients like us, which allowed my husband and me to keep up with the outrageous price increases on almost everything. Who knew that toilet paper would be such a hot commodity in the case of a global pandemic? We definitely didn't plan for that when we made our pandemic preparation kit.
Radiation was presented as an option, and I took it, knowing that I would do absolutely anything to never have to go through that again. For me, radiation was an absolute cake walk compare to chemo. I had to do only 10 days of it, and it was an extremely low dose.
One month after completing radiation, I found myself starting my very first nursing job at the same hospital I had been treated at. It was surreal being on the other side. I was finally getting to accomplish my goals, but life looked so different from how I expected it to look. My fears of relapse continued, worsening around scans and doctor's appointments. I pushed forward each day, growing just a little bit more secure in my disease-free state with each milestone I hit.
My latest milestone was in October of this year, when I celebrated four years passing since my diagnosis. I'm doing a lot better now, but every time I see someone new join the cancer club, my heart shatters. I watched as beloved internet science geek Hank Green was diagnosed with HL and had to undergo the same grueling chemotherapy that I did. I have met countless other patient across the globe (whom I am so thankful for!) who have had to suffer through the same treatments.
I have even watched a few of my cancer friends die due to treatments that failed them. This is one of the biggest reasons that I plan to support the Blood Cancer United; they are constantly supporting treatment research to find new ways of treating patients that may not involve pushing them to the brink of death. They connect patients with clinical trials that are not typically easy to find and that may save their lives. They're even innovating the way that childhood cancer is treated with the Dare to Dream Project.
Last weekend, I attended my first Blood Cancer United Light The Night, which is something I've wanted to do since diagnosis. What I experienced there was surreal. White lanterns were lit up, which allowed cancer patients to identify each other. Several children carried white lanterns; any older people did, too. Some people carried gold lanterns in memory of a loved one who had passed. A family stood on stage holding a gold lantern with their 5 year old son's Mario hat perched atop. He passed away this year, and the gold was in remembrance of him. Supporters carried red lanterns that surrounded us in a love that was visible in a way that can't be described. A local little boy whom I had read about needing blood donations joined me in the survivor's circle.
My husband had donated in his name, and seeing him standing there in front of me brought me to tears. We all gathered with our lanterns lit brightly and listened as the host read the highest donors off. Hearing the incredible amount of money that was raised humbled me and made me feel so loved. I could sense that the people around me holding red lanterns really, really meant they were supporters as they had worked extremely hard to raise this money for such a worthy cause. Those of us carrying white or gold lanterns clearly mean a lot to them, even though we were all strangers going into this night.
I left feeling like I mattered. I left feeling empowered. I left knowing that the Blood Cancer United was an organization who wants the best for cancer patients. They want to see treatment advances, survival rates grow, patient connections formed, and cancer cured. The Blood Cancer United's contribution to cancer research and support is unmatched. They are a key player in the efforts to cure and prevent blood cancers, which is a goal that everyone should support.
My support will always go to the Blood Cancer United for all that they do for anyone carrying any color lantern.
Mara
Hodgkin lymphoma (HL)
