Shouting Cancer in a Crowded Room

One Friday night, my 9-year-old son Noah and I were picking up Thai food when something on the counter caught his eye. It was a cardboard coin collector for the Leukemia & Lymphoma Society. Noah turned to me in the crowded waiting area and said proudly in his best outdoor voice, “Hey Dad, I know someone who has Lymphoma!” And he patted me on the shoulder. “Yes,” I said. “Yes, you do.”

It took me by surprise. I see these signs of cancer awareness all around and they register with me, but I was taken aback to see Noah make the connection. It’s not that we’ve hidden information from them. We’ve been very open with the boys since the time of my follicular lymphoma diagnosis nearly 3 years ago — they even came to my last chemo appointment more than a year ago. But we hadn’t talked about cancer for some time. Since finishing chemo, my quarterly visits have been thankfully uneventful. Clearly, though, the subject is lurking not too far from the surface of Noah’s mind. It reminded me that as much as cancer has entered my life permanently, it’s also entered my family’s life permanently. Lymphoma will never just be this thing that people raise money for and talk about abstractly; it will always be this disease that my sons’ Dad has.

That stark reminder aside, I was also at least a little embarrassed to be outed in a crowded restaurant. The thing is: if you look at me, or even know me, there’s little to give away that I have cancer. My hair never fell out, even during chemo; I didn’t miss long stretches of work; didn’t lose a lot of weight; didn’t stop coaching sports, or running or doing anything. To the public, my cancer is very much hidden, even if I’ve been publicly open about my diagnosis.

We’re not too far removed from the days when cancer wasn’t a word spoken in public. It was whispered or avoided, and cancer patients weren’t so much patients, but victims to be pitied at best, avoided at worst. We’ve come a long way, but for all of our progress, culturally and scientifically, there’s still a stigma attached to the disease, or at least a gross misunderstanding. It’s easy to lump all cancer patients in one giant box of pity. Some people avoid cancer patients because they think they’re dying, they don’t know what to say, how to help, or are even afraid of catching it. It takes effort to understand the nuances of each individual’s cancer. So while I don’t mind people knowing my diagnosis, I want them to understand the full situation — that cancer would never fully define me. The cancer patient label is so large it can obscure all the other things that identify me: dad, husband, son, brother, coach, runner, writer.

Looking back now, I realize how young my boys were when we talked to them about my diagnosis. It’s a lot for six- and nine-year-olds to process. But by telling them before I even went through treatment, it gave them time — months, years —  to process the information and ask questions: What was cancer? Was there a cure? Would I die? Would I still coach their teams? Were we still going on vacation? It helped them understand that this definition, “lymphoma patient” was now just one more part of who their Dad was. 

So that when, three-years later, we ran into a lymphoma sign in a crowded restaurant, it would be as natural for him to claim that identity for me along with all the other things that define his Dad.

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Comments

  1. Great, GREAT post Michael. My kids were 5 and 3 when I was diagnosed. We didn’t tell them then exactly what was going on. It was a lot for me to take in, let alone, expect them to be able to understand it in any capacity. We just told them that Daddy was very sick, and will have to see a lot of doctors, and take medicine that will make him look different. They heard the word cancer, but it was never explained.

    It wasn’t until my a year after I ended treatment that my son came home from school one day and just plainly asked me “What is cancer?” This is when we had the discussion of exactly what I had been through. It also was the chance to teach my son about cancer in general and hopefully shape him to be one that goes against this stigma of shame or silence that still persists. He gladly will tell people his dad had cancer but is better now.

    And as you said, it’s not just something that entered OUR lives permanently, but the lives of our families as well.

    Well done sir.

  2. I am a child life specialist who works with children who are hospitalized for various reasons.
    Part of our role is helping to explain to children what cancer is in ways they can understand based on their age level. It’s great that you have been honest with your children about your diagnosis. The amazing things about kids is, they can tell something is wrong or different even when we try and hide it from them! It’s great if they have the information and then can ask the questions they have and the questions will change with time and with age as they can begin to understand the diagnosis in different ways. There are also a few books for kids that can be helpful. The American Cancer Society has one called “Because Someone I Love Has Cancer” and there is another book I have used called “Someone I Love has Cancer.”
    Its wonderful to hear that your recent medical visits have been uneventful.
    Wishing you all the best!

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