My local oncologist was both urgent and firm in telling me that I needed to begin treatment for CLL immediately. I hesitated.
“You owe it to your family,” he said. I continued to question him.
“How can you do this to your children?” he kept going.
“But are you sure I need to be treated? I read that statistically patients treated with what you’re proposing don’t stay in remission very long, if they get there at all.” Now I was messing with his schedule. And this was a guy who took his schedule very seriously: blood draw, scale, exam room and see you next time. It felt like rapid fire psychological warfare. He hurled the next three at me.
“Stay off the internet.”
“It’s my job to worry about this and your job to live your life.”
“If you were my daughter, this is what I would tell you to do.”
Obviously, a life threatening diagnosis makes you ponder life. In addition to scaring the crap out of you, it teaches you about who you are, who you want to be and it takes you out of the bubble we all can’t help but get stuck in.
The “if you were my daughter line” was supposed to be the conversation ender, and it was. I made the appointment to get the port installed and left, right on time, 15 minutes after I had arrived. I called the next day and canceled. At first, having a doctor who was always on time seemed like a great thing, but then I started to realize that the doctor was more concerned with his schedule than my life. Obviously, my priorities were a little different. My next stop was the polar opposite.
I had always planned on seeing a researcher, but I hadn’t planned on the high stakes of having been told that I needed to be treated immediately. My first appointment was at 4:00 pm, but when I arrived, I was told that the doctor was running late, and given some suggestions for nearby places to hang out. It was 7:00 pm before I saw the doctor. I expected that he would be harried, and in a hurry to go home. Instead, he didn’t seem to notice what time it was. He seemed slightly surprised when the maintenance staff turned the lights off at 8:00 pm but the nurse ran out and quickly fixed that. This doc was singularly focused on spelunking for my enlarged nodes and spleen. That brings me to CLL life lesson #1 – be all in. I want to spend my time engaged in what I’m doing. If I can’t find that zone everyday, I’ll settle for most days. I definitely don’t want to be the person just going through the motions and in a hurry to leave. More importantly, I don’t want to be under the care of the person who’s just going through the motions.
I could understand my local doctor’s admonition to stay off the internet because admittedly there’s a lot of questionable information floating around, but if he had bothered to ask, he would have known that I was reading the journal Blood and abstracts from the ASH (American Society of Hematology) annual convention. I was also watching YouTube videos of leading researchers. While this was overwhelming at first, it didn’t take long to be able to grasp the main ideas.
Life lesson #2 is in the words of Winnie the Pooh, “You are braver than you believe, stronger than you seem. And smarter than you think.” It’s easy to be intimidated by data, by words we can’t pronounce, and an endless stream of acronyms. It’s a lot like learning a new language. First, the words come out so fast you can’t tell them apart. Soon, you can tease out a word here and there. Next, you might even understand a full sentence. The key is to start slowly and go over it a few times.
I started by borrowing my then 9th grader’s biology textbook and studying pictures of cells. The book was full of pretty pictures (which I needed), so I was able to form a rudimentary image. Although I’m pretty sure my cells aren’t neon green, electric blue and hot pink, the images were very helpful. Next, I read articles about prognostic indicators and studied the data for the various treatment options. At first, data was a four letter word. I wasn’t a scientist or a mathematician. Who was I to think I could understand all of those graphs and acronyms? The science is complicated, but the data really isn’t that difficult to get the hang of. It’s more about the access to information than the ability to understand it.
Life lesson #3 – Google is a game changer. Yes, Google gets its own life lesson. There’s a sign that says, “Please don’t confuse your Google search with my medical degree.” I think that sign, and doctors who want their patients to stay off the internet have it all wrong. I’ll never know anywhere near what my specialist knows, but Google allowed me to find him. Google gave me access to the data that made me question my original doctor’s treatment plan. It isn’t much of a stretch to say that Google saved my life.
CLL has given me confidence in my ability to learn technical material. The world of CLL is changing so quickly that it’s important to me to keep up with all of the new developments, or at least most of them. It turned out that I didn’t need to be treated; through caution and careful observation I’ve been able to stay in watch and wait for the last 7 years.
Life lesson #4 is to trust your instincts. When I told my original doctor that I wanted to get a second opinion, it was like one of those cartoons where the words and body language are totally opposite. He said everything he was supposed to say, but there was something very aggressive about his body language. It’s easy to dismiss gut feelings, because we’re so far out of our comfort zones, but sometimes they’re all we have to go on.
Two years after I canceled all of my appointments with my first doctor, I had a message on my answering machine.
“We just noticed that you are way, way overdue for an appointment. Please call our office immediately.” I simply pressed “delete.”
CLL used to be like a marathon, but now, thanks to recent advances, it’s more like an ultra. Thanks to the CLL Society, it’s easier than ever before to learn, stay informed and to find a specialist.
Jennifer Woolf is an author, writing instructor and entrepreneur. She is founder of both FigurativeWriting.com and The Children’s Creative Writing Institute. Jenn is also a fellow at the Los Angeles Writing Project. Her mission is for every child to be able to tell the difference between onomatopoeia and hyperbole. Originally from Baltimore, Jenn lives in Los Angeles with her husband, two daughters and a beagle named Snickers. She still roots for the Ravens.
Originally published in The CLL Tribune Q1 2017.