Still the Luckiest Unlucky Man

The second round of biopsies proved far less efficient than my first experience. I waited over an hour before being called into the same operating room as before. Unlike my previous visit, there was no organized preparation—no changing clothes or being assigned a gurney. I had to request a gown myself and ended up placing my belongings on a chair rather than in a proper locker.

When the doctor arrived, he announced he would only perform one biopsy. I immediately pointed out that my oncologist had specifically requested two biopsies—one from my neck and another from my jaw. The doctor dismissed this, claiming that oncologists often request more procedures than necessary. Concerned, I asked them to contact Dr. Kridel for confirmation.

The nurse returned after calling Dr. Kridel’s office and verified that two biopsies were indeed required. Not satisfied with this confirmation, the doctor asked to speak with Dr. Kridel personally. After their conversation, he acknowledged that both biopsies were necessary.

During the procedure, someone entered the room wearing a mask but no surgical scrubs. This person turned out to be a research assistant there to collect the extra samples I had volunteered to donate for research purposes. Unlike the medical staff, they never properly introduced themselves—I only deduced their role from the ongoing conversation. After ten biopsy cores were taken, I was simply sent on my way.

Fortunately, these biopsies confirmed my diagnosis of follicular lymphoma and alleviated concerns about transformation to a more aggressive form of cancer.

Treatment for follicular lymphoma

Treatment for follicular lymphoma follows a straightforward approach. Being an indolent or slow-growing cancer, most patients discover it while investigating other health conditions—exactly what happened in my case. I sought medical attention for an unrelated issue, and this cancer appeared unexpectedly. Consequently, most patients are diagnosed at stage 3 or 4.

It’s important to understand that stage 4 lymphoma differs significantly from stage 4 liver cancer. For lymphoma, stage 4 simply indicates the cancer has spread to multiple areas of the body. Since lymph nodes exist throughout our system, widespread distribution is natural. A liver, however, occupies a specific location, so when liver cancer spreads extensively, the prognosis is much grimmer.

Treatment decisions follow a logical progression of criteria. If the disease is minimal with no secondary symptoms, doctors recommend active surveillance—the “watch and wait” approach I’m already familiar with from my prostate cancer. For localized cancer, radiation therapy is the standard choice. When cancer has spread, as in my case, treatment involves Rituximab and Bendamustine or a similar combination of immunotherapy and chemotherapy. For transformed cases, stronger chemotherapy regimens like R-CHOP are used. Elderly patients who cannot tolerate chemotherapy may receive immunotherapy alone.

Based on these guidelines, I’m undergoing the standard Ritux/Benda combination. Currently, follicular lymphoma remains incurable. This means I can achieve remission, but the cancer will likely reappear, at which point we’ll apply the same treatment approach again.

My experience with treatment

The first day of treatment was undoubtedly the most challenging—a marathon session lasting about seven hours. The extended duration stems from the common allergic reactions to Rituximab, requiring extremely slow intravenous administration. They begin by giving Benadryl intravenously, with nurses vigilantly monitoring for adverse reactions like dizziness, dry mouth, or itching. If symptoms occur, they pause the infusion, administer more Benadryl, wait for symptoms to subside, then resume.

I found myself needing to urinate frequently, approximately every thirty minutes. Each time I stood up, the alarm would trigger because Rituximab has an effervescent quality that creates bubbles in the IV line when disturbed. Every instance required a nurse to silence the alarm, clear the bubbles, and restart the process—significantly extending an already lengthy day.

In subsequent treatments, Rituximab is administered as a subcutaneous injection. My second round occurred just before Christmas, leaving the injection site notably red and painful. Though they warned me about potential inflammation, when I developed a fever on Christmas Eve, we ended up visiting the Emergency Room at Toronto General. ERs are particularly disheartening places during holidays—they’re challenging environments normally, but Christmas brings an additional layer of sadness. Upon mentioning I was a chemotherapy patient from Princess Margaret, they promptly admitted me to a private room. The diagnosis was cellulitis, an infection from the injection site, which we treated with antibiotics before resuming my regular treatment schedule.

I haven’t experienced many other urgent complications since then. Occasional fevers occur because the treatment suppresses my immune system, making me more vulnerable to infections. I take precautions by wearing masks on public transit and practicing diligent hand hygiene. The Ritux/Benda regimen typically doesn’t cause hair loss. I manage nausea effectively by taking anti-nausea medications proactively—before symptoms appear. For me, the two most significant challenges are brain fog and fatigue, which are almost certainly interconnected.

Good fortunes

When I say I’m the luckiest unlucky person, I mean that while getting cancer is undeniably unfortunate, I have access to available treatments—a significant blessing. I receive care at Princess Margaret Hospital, a world-class cancer treatment facility. Tomorrow, as I sit in the treatment chair with chemotherapy drugs flowing into my system through an IV, I’ll count my blessings.

Looking around the clinic provides powerful perspective. I see the teenager just beginning R-CHOP treatment, listening as his mother anxiously inquires about the day’s schedule because she has other children requiring her attention. There is a frail woman needing assistance to sit down and stand up. I notice another patient with her hair wet, wearing a cooling cap connected to an A/C unit along with cold gloves and booties to prevent neuropathy and hair loss.

Not to minimize my experience—this journey hasn’t been easy. Most days leave me exhausted. I face increased vulnerability to infections. Simple concentration requires substantially more effort than before. Yet I still manage to walk to and from my treatments independently, and I know my condition will improve with time. And if it does come back, I know there are treatments available.