Five Years Since My Lymphoma Diagnosis: What I Know Now

As I write this, it has been five years — on July 3, 2020 — since my diagnosis of follicular lymphoma, a form of blood cancer, was confirmed. The day before, I had gone to Kaiser’s imaging center for a CT scan. Based on my sinus tachycardia (a high heart rate) and the absence of any other causes after wearing a heart monitor for three days, my doctor suspected a blood clot in my lung — something increasingly common at the time due to the spread of COVID-19. Because of the risk and urgency of treating a possible blood clot, the imaging center had me wait next to a dedicated phone while the technician read the scan.

After a short wait, perhaps half an hour, though it’s a bit hazy now, the phone rang, and my doctor shared the results. It wasn’t a blood clot. The scan had come back as “probable lymphoma, possible leukemia.”

It was completely unexpected. I had undergone a lymph node biopsy the day before, prompted by an enlarged lymph node found by a massage therapist. My doctor had suggested the swelling was likely due to inflammation from the suspected blood clot. Expecting to confirm a clot but instead receiving a cancer diagnosis felt like sitting down for a kids’ movie and ending up in a horror film.

At the time, I knew very little about lymphoma, only that my stepfather had been diagnosed with a form of it (I forget which), and had died halfway through treatment from viral encephalitis, which his immune-suppressed system couldn’t fight off. Based on that limited knowledge, my immediate reaction was terror.

My doctor discussed next steps and explained that the oncology department would be contacting me. Treatment decisions would depend in part on the biopsy results, which might or might not be available before the long holiday weekend. Somewhat to my surprise — that year, as this, July 4 fell on a Friday, and most departments were closed — my doctor called back on July 3 to confirm the diagnosis. Almost immediately afterward, I heard from the oncology department, which asked me to schedule a PET scan at one of two available locations, preferably before meeting with my oncologist on Wednesday. Things moved quickly from there.

I had the PET scan on Saturday, met with my oncologist Wednesday, and underwent a bone marrow biopsy on Friday. The nurse who performed the biopsy showed me my PET scan results and said my oncologist would go over them in more detail once the bone marrow results came back — and that I would be starting treatment the following week. It’s a good thing the nurse told me, because if I was informed any other way, I don’t recall it. A friend had come with me for the biopsy, since I was required to have a driver.

Looking back over the past five years, I realize that more things have returned to normal than not, but some of the things that didn’t are significant. COVID-19 precautions have largely faded into the background, although mask-wearing is far more common than it used to be. I retired; the combination of immune suppression, a pandemic, and teaching middle school seemed like a bad idea, especially considering what happened to my stepfather during treatment. Other than retiring, I’ve resumed most of my usual activities and even added weightlifting. I passed a demanding physical exam for my 6th-degree black belt in TaeKwon-Do, testing alongside a friend more than 20 years younger than me, something I had been working toward since 1987.

But some things will never be the same. Follicular lymphoma, although highly treatable, is considered chronic and incurable. I will never not have cancer, unless there’s a medical breakthrough and a cure, and even then, only if my cancer recurs, which remains an ever-present possibility. I will never stop feeling nervous before my twice-yearly oncology checkups. I will never stop worrying about symptoms that even vaguely resemble those I had before diagnosis: sinus tachycardia (likely caused by inflammation from the cancer but which returns whenever I catch a bug), fatigue, night sweats, and sudden, unexplained weight loss. These symptoms are common to many illnesses, and to aging, which at 59 is becoming more noticeable, but my stress levels are permanently higher than they once were. That’s something many people don’t understand, because remission doesn’t really mean cured.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.