B-cell lymphoma caregiver: Why I use my experience to help other families

I’ve known people who’ve been through cancer treatment before, but until my dad was diagnosed with stage IV B-cell lymphoma — a type of non-Hodgkin’s lymphoma — in October 2013, I’d never seen it up close. At the time, my mother was still recovering from a spine injury, so I became my father’s primary caregiver.

I took my dad to his appointments, followed up with his doctors and organized all of his prescriptions. I also flushed out his CVC line (a catheter placed in a large vein), and when he was in isolation due to treatment complications, I was the enforcer. It was my job to make sure everyone knew what they had to do to protect him before coming inside the house, like washing their hands or putting on a mask.

A B-cell lymphoma diagnosis

My father’s diagnosis came as a massive shock to my family. We all knew something was wrong, but even in his late 70s, my dad was in really great shape. The only lymphoma symptoms he’d experienced were stomach pain after eating and a slight hitch in his golf swing. His doctor in Michigan said it was an ulcer and treated him for gastroesophageal reflux disease (GERD). Eventually, an endoscopic exam revealed a spot of lymphoma in his stomach, so he came to MD Anderson for a second opinion.

At MD Anderson, we learned that my dad’s B-cell lymphoma was actually stage IV instead of stage I. And not only was the disease in his stomach, he also had a tumor the size of a fist on his spine. The tumor’s tentacles stretched well above and below it and were slowly crushing his spine. The doctors couldn’t believe he was still getting around so well.

A race against time

We were in emergency mode from that moment on. Our whole family was supposed to fly out to my niece’s wedding the day after my dad received his diagnosis. He asked if he could still attend the wedding and start treatment on Monday. The doctors strongly advised against it.

Dad decided that if things were that serious, he’d better listen. He was admitted to the hospital for intravenous chemotherapy that same night. I later learned that we’d been racing against the clock. If the cancer had infiltrated his spinal fluid, it would’ve only been a matter of time. MD Anderson literally saved his life.

The hardest part of my dad’s B-cell lymphoma treatment

Since I’d never been exposed to cancer before my dad’s diagnosis, I didn’t really know what to expect. The hardest part was seeing him suffer during treatment. I knew it was necessary for him to get better, but that doesn’t make it any easier to watch.

My father had six rounds of inpatient chemotherapy and a spinal tap during each one to see if the cancer had spread. Then the chemotherapy was injected directly into his spinal cord to make sure it didn’t. It was an extremely painful procedure.

My father was a very good patient, though, which can make a big difference in the outcome. He never let himself think he wasn’t going to make it. And he always did what he was supposed to do. That’s the thing about cancer treatment: you have to decide to follow all the directions. You can’t just pick and choose. And as hard as it was for my dad, he did it. You can, too.

‘We make a difference’

I cannot say enough good things about MD Anderson and how its teams work together. One way I give back is by serving on MD Anderson’s Patient and Family Advisor Program. I love everything about MD Anderson, but there are always opportunities to improve.

One of the things the committee has done is expand the hours during which patients can take a shuttle between the Main Building and the Mays Clinic.

The committee also changed the way patients are addressed when they are called. Instead of asking immediately for a medical record number, staff members greet patients personally, saying, “Good morning, Mr. So-and-so. May I please have your medical record number?” This has been met with a great deal of satisfaction.

The best part of being on the committee is realizing we make a difference — both for my dad and for other patients and their families. We provide input on both big and little issues, because staff may not see what patients, families and caregivers see. Our insight is valued since we know the exact challenges that people face. After all, we’ve been there, too.

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