Adam, Diffuse Large B-Cell Lymphoma Survivor
Adam, Diffuse Large B-Cell Lymphoma Survivor
Early in the morning on November 5th, 2022, I woke up with a stabbing pain in the lower right side of my abdomen. After a couple of hours of ignoring the pain, I knew I had to wake up my wife and have her take me to the ER out of concern it may be more than just a stomach ache.
At the ER, a CT scan confirmed that I had appendicitis and required an emergency appendectomy. However, the attentive team at Brigham and Women’s in Boston noticed something else in my CT scan results: abnormally large lymph nodes within my abdomen. Prior to going in for my surgery, the surgeon brought these abnormalities to my attention and said it could be because my body was fighting the appendicitis infection and to follow up with my primary care provider in 4-6 weeks.
Following the instructions, I went in for a follow-up CT scan on December 20th, 2022. The results showed that my lymph nodes continued to grow, indicating that this was not tied to the infection from a month prior and was a sign of a potentially bigger problem. I was quickly scheduled for a biopsy on December 29th.
Despite being sedated to numb the pain and discomfort of the procedure, I remember the fear, anxiety, and concern while lying on the CT scan table. I could feel the biopsy needle painlessly doing its job as my mind was racing. My father began his battles with cancer at the age of 30 after being diagnosed with Hodgkin lymphoma. I had just turned 29 and there seemed to be just no way I could be following his path step by step and be facing my own diagnosis.
On January 12th, 2023, I got the call from my primary care provider with the biopsy results: I was diagnosed with T-cell/histiocyte-rich B-cell lymphoma, an uncommon variant of diffuse large B-cell lymphoma. In just a few short minutes on the phone, my life had changed forever, and I had to face the reality that my own battle had begun. My doctor immediately referred me to Dana-Farber Cancer Institute.
Mentally, I was struggling with everything going on. Between my biopsy and diagnosis, I was unexpectedly laid off from my job. While trying to figure out the next step in my career and how to move onto my wife’s healthcare plan, I was awaiting the news on whether or not I had cancer. Without delay, I began the application and interview process with this very dark, unknowing cloud looming over my head. Throughout the interviews, I didn’t disclose my situation out of fear that it could somehow be used against me in my chances to receive a job offer.
The next couple of weeks following my diagnosis consisted of endless calls to family and friends to share my diagnosis, countless appointments being scheduled, job interviews, and also training our new puppy. My world was an absolute whirlwind filled with uncertainty, and I know my wife felt the same.
At my consultation appointment at Dana-Farber, my doctor clearly explained my situation and my treatment plan to my wife and me. I needed her along for the ride every step of the way. I was facing a total of 6 rounds of R-CHOP chemotherapy every 3 weeks, with a PET scan after the 3rd round. I proceeded to ask questions to understand the process, side effects, and lasting impacts. I wasn’t told nor did I ask what stage I was in as my doctors told me that the treatment was the same regardless.
Despite all of the chaos and information overload, I received and signed a job offer. I spoke to my new manager and shared with her my situation: my first day at my new job was February 6th, and my first chemotherapy treatment was scheduled for February 9th.
On February 9th, a scary, unfamiliar process soon became second nature: driving to Dana-Farber, parking the car, completing the COVID check, checking in, getting blood drawn, getting my vitals taken, consulting and reviewing results with my doctors, being approved for treatment, and proceeding to my recliner for my chemotherapy infusion.
My first treatment went about as well as you’d expect: I nearly passed out getting my blood drawn as I didn’t yet have my port installed, and then proceeded to sleep for most of my infusion as I couldn’t fight the drowsiness from the Benadryl given to me to help suppress any allergic reactions to the chemo. Meanwhile, my wife sat in a less-than-comfortable office chair the whole time, keeping me company despite the lack of conversation and engagement from my side.
Once home, my new routine began to develop. I would spend the rest of the treatment day and the following day sleeping, as my body had very little energy and drive, despite the heavy dose of prednisone. I would slowly regain some of my energy over the next 2 days until I stopped taking my prednisone for the cycle, resulting in challenging withdrawal symptoms.
About a week after treatment, I would get to feeling my new normal: persistent brain fog, neuropathy in my fingertips, general fatigue, and bouts of nausea. Ironically, I had learned that the best treatment for my nausea was to eat, which by the end of my treatment resulted in a surprising weight gain.
Through all of the side effects, I was still trying to maintain as much of a normal life as possible, including onboarding and ramping up at my new job, training a puppy, and managing a kitchen renovation. Due to becoming immunocompromised and the fatigue, I wasn’t able to keep up with the “normal” activities of a 29-year-old. The reality of my life was taking its toll, leading me to ask my primary care provider for medication to help manage my anxiety.
After my first treatment, everything became business as usual. My wife and I knew what to expect in terms of the process, the side effects, and the recovery. It became like clockwork and we settled into this new life the best that we could.
If I can use my own experience to help just one person through their own, it would make all of the discomfort, struggles, anxiety, side effects, and bad memories worth it.
It wasn’t until after my second treatment that the hair loss began. What started as just seeing a few pieces of hair fall out quickly turned into chunks of hair coming out. This was the most emotional part of my experience as this made me feel and look like a real cancer patient. Every time I looked in a mirror, I was reminded of the reality I was living in and no longer could ignore. This was real: I was battling cancer.
Following my third treatment in mid-April, I went in for my halfway PET scan to see if my treatment plan was working. The scan results showed that my lymph nodes were shrinking in size to near complete resolution. I was halfway through treatment, and I was winning my battle. This update gave me the mental lift I needed to push through the remaining three cycles.
My next two treatments came and went, following the same routine as all treatments prior. My final treatment was on May 25th, and just like the five previous, it started the exact same except it did feel different. The anxiety of the day was replaced instead with excitement and relief. While I knew exactly what was going to happen that day and the following days, I was hopeful that this was going to be it; that this was going to be the last time I had to go through this.
Following my usual nap, I was awoken by the amazing team of nurses who paraded their way into my room with cheers, toy instruments, a celebratory donut from the cafeteria, and a bottle of sparkling grape juice. This was the best alarm clock I have ever experienced and signified that I was done. I had completed my treatment, I had survived chemotherapy, and I had completed my battle.
The only thing standing between me and the sought-after remission declaration was one final PET scan to confirm whether there was any cancer left. On June 20th, I went in for the scan, and within a few hours, got an email with my results. Although I knew I was going to meet with my doctor just 2 days later, my anxiety and nerves led me to open my results on my own. I scrolled down and saw the most amazing sentence I have ever seen in my life: No evidence of metabolically active lymphoma.
On June 22nd, my doctor confirmed this result. In just over 5 months from diagnosis to this appointment, I won my battle, and I was officially in remission. June 22nd marked the first day of my next chapter, rejuvenated with a new outlook on life and a new appreciation for everything. This also marked the first day of my healing journey, both physically and mentally. No longer was I going to be subjected to the harsh chemotherapy drugs and their side effects.
Physically, the healing process started almost immediately, with the brain fog, fatigue, and neuropathy dissipating over the next couple of months. My hair began to return, albeit in a new curly style, and I began to feel like myself again.
What I didn’t realize, though, was that the mental recovery would not be as quick and easy as the physical. Sure, I understood I was in remission and had beaten lymphoma, but I was struggling to mentally process this. I began to assimilate back into a “normal” routine and lifestyle almost immediately, never giving myself the chance to reflect on what I had just gone through. I found myself avoiding talking about my experience and avoiding acknowledging what I had gone through, trying to ignore the reality that this was now a part of who I was.
It wasn’t until I had the opportunity to meet with Major League Baseball star Liam Hendriks, who had also gone through treatment for his own battle with non-Hodgkin lymphoma at the same time I did. My father watched Liam accept the Jimmy V Award for Perseverance at the ESPYs and took a chance to send Liam and the Chicago White Sox a letter, explaining that Liam’s acceptance speech and experience resonated with him, as both my dad and I have also gone through our own experiences with lymphoma.
In September, I was contacted by the Red Sox community relations manager who was working with the White Sox community relations team, on behalf of Liam, asking if I wanted to meet with Liam and share my experience with him before the Red Sox and White Sox played at Fenway. Without hesitation, I accepted this opportunity and brought along my father and my wife.
This proved to be the most therapeutic part of my mental recovery and gave me the confidence and comfort to finally open up about my experience. I was able to share with someone who understands what I had gone through and that I could relate to. I felt a sense of relief to finally begin accepting and reflecting on my journey and finally felt like I found my voice to begin opening up about it.
A year later, in September 2024, I once again had the chance to meet with Liam, who is now on the Red Sox, and catch up as we both continue our recoveries. I can’t thank him and the Red Sox enough for helping play such a role in my mental recovery.
Liam’s own experience and work within the community has inspired me to do the same. Realizing how much talking to someone who is also a recent survivor helped me process my own experience makes me want to do what I can to help others. Cancer can be very isolating and even though I had an incredible support network consisting of my parents, my in-laws, my friends, and most importantly, my wife, in hindsight I now realize I struggled to have the mental support from someone I could relate to.
If I can use my own experience to help just one person through their own, it would make all of the discomfort, struggles, anxiety, side effects, and bad memories worth it.
I truly feel I am much better and stronger now than I was before my diagnosis.