I remember the day my dad told me about his health. It was in September. I called to video chat with the family because it was his birthday. The family gathered around my brother’s laptop at the kitchen table. This is their usual arrangement for weekend chats. We joked around and we did some catching up. I asked for details about his birthday weekend plans. As the conversation wound down, I attempted to excuse myself to cook dinner.
Dad cut in. He said he found a tick on his back a few weeks ago. It’s common for ticks to carry Lyme disease where my family lives, so Dad had blood work done as a precaution. As he’s telling me the story, I realize the tone in the room has changed. I see faces drawn with expressions of tension or anxiety. The plan was only to wish Dad a happy birthday and sign off to cook dinner, but now I’m steeling myself for the news that Dad has Lyme disease.
Dad continued. His white blood cells were elevated. The doctor cautioned that a few viruses are capable of driving white blood cell counts this high, but there might be another explanation. I anticipated what he would say next. I expected to hear an L-word that rhymes with crime. One that’s a homonym of a certain green-skinned citrus fruit. That’s when Dad uttered a different L-word: leukemia.
I was stunned. I tried to be rational. I didn’t want to jump to conclusions. Dad said the CLL diagnosis wasn’t confirmed, but it would explain the blood counts. My throat tightened. My face felt hot. I could hear the blood in my ears. Out of irony, I said happy birthday one last time. I felt my stoicism melting away so, as casually as I could, I ended the chat by folding my computer closed.
The diagnosis was confirmed a month later. My mom called to share the news when they got home from the appointment. Dad has CLL. For weeks afterward, I read obsessively about CLL. At first, I wanted answers to my basic questions. What is CLL? What do B-cells do? What’s the difference between a normal B-cell and a cancerous B-cell? At some point, I even wondered if Dad would benefit from medical marijuana. From there, I wanted to learn the minute details of CLL cancer biology.
I read about PI3K and BTK signaling. I consumed paper after paper on outcomes of approved and preclinical drug courses. Primarily, I read these papers to gain insight to a single morbid question: How much time does Dad have left? If he takes this drug, how long does that delay the inevitable? Which drug will come after that? Then what? Is he expected to endure round after round of terrible drugs? Coincidentally, 2014 was a landmark year for CLL drug approvals. I found hope in this. It seems that CLL is transforming into a carefully monitored chronic disease like diabetes.
When I talk to my mom, I’m impressed by how well-informed she is. She does not have a background in biology, yet she can rattle off clinical trials, different drugs, and their targets. That’s why I was surprised when Mom mentioned one of her biggest concerns. She’s convinced that Dad will succumb to pneumonia during his first course of chemotherapy. She cites his asthma as a risk factor. I can’t recall pneumonia being mentioned once in the stacks of papers I read. I wondered whether I should add pneumonia to my growing list of concerns for Dad.
This conversation led to a realization. I think about CLL in very different terms from my parents. I concentrate on the cellular and molecular details of the disease. For example, I preoccupied myself with learning about mathematical models of B-cell death and proliferation rates. I think this technical thought process is a combination of my training as a developmental biologist and learning about CLL from the primary literature. I’m at a research institution so my learning isn’t hampered by paywalls. I get access to virtually any manuscript I want while my family searches for open access literature and reputable websites to learn from.
My parents and I have no clinical experience. The topics that we choose to learn about may not necessarily influence the way we take care of Dad. The CLL Society is an excellent resource because it provides patients and families like mine with an objective and credible source of information. Resources like this help temper my family’s expectations for Dad’s future.
It’s September again. Dad celebrates another birthday this weekend. His B-cells haven’t doubled yet. It’s been 12 months, and I still have a healthy dad.
Kate is a developmental biologist and a Ph.D. candidate. Her father was diagnosed with CLL in Fall 2014.
Originally published in The CLL Tribune Q3 2015.