The Phrases That Define Us

“Call it by its full name—just saying ‘cancer’ gives it power over you.”

That was the advice given to me by my first managing oncologist (he helped manage my treatment, while a local guy monitored and took care of things if I was in the hospital) near the time I was diagnosed. I could just say I have leukemia, or that I have a chronic leukemia, or that I have LGL Leukemia, but instead I say that I have Chronic NK Cell and T-Cell Large Granular Lymphocyte Leukemia (or Chronic NK Cell and T-Cell LGL Leukemia—either way it’s a mouthful, but hey, so’s having two 1 in five million cancers at the same time).

“You poor thing”—or, The Look (of pity… or surprise)

I think all of us AYAs have gone into an appointment with our oncologist or to get an infusion or transfusion and have been asked at the front desk who we are visiting or what we are here for. Then we say “I’m the patient,” followed by that quick flash of pity from the nurse/receptionist/person working there, occasionally accompanied by “Oh…” or “Oh you poor thing, you’re too young to be dealing with this!” At the start when I would get that look, I would sometimes get exasperated and I would just react with a deadpan, “Yup, it’s me—I have cancer.”

“You have cancer? But you’re so young!”

All of us have heard that, and I bet that we have all heard it more times than we can count. My first time hearing it was before I was diagnosed—I said, “Well, I was Googling all of these results, and the most likely thing seems like cancer or some kind of blood disorder” (thanks, Dr. Google!) to my local oncologist and his response was, “Well, you’re a bit young to have cancer—it’s probably some kind of deficiency. I ordered a bunch of tests, but let’s schedule a bone marrow biopsy for next week to be safe.” With him, I think his “you’re too young” was a protective one—one to make it so I wouldn’t become a giant gibbering pile of anxiety. The other individuals who have said a variation on “you’re too young!” include a fellow cancer patient (while we were both about to get our blood drawn and confirming our dates of birth—she was in her 70s) and medical professionals whose brains must short circuit when they see someone who isn’t 50+ or a St. Jude kid whose medical record says “hey, this patient has cancer and it is this type.”

I would have to say that the oddest one was when I was waiting for a blood transfusion one day—I was out of breath from walking to the transfusion center at the hospital, pale as a sheet, and I took off my mask for a minute so my glasses would stop fogging up. A woman sits down across from me and says, “Oh my god, you look so young! What are you here for, you don’t have cancer, do you?” I responded with a perfunctory, “I do have cancer.” When she started talking about, “Oh I never watch the news in the morning, it’s so stressful, but today I saw it and there was a story about how a bunch of kids raised money for their classmate with cancer who was dying, so I am going to pray for you!” Luckily right after that, my mom and I were called back so I could start having a bag of blood flow into my veins. However, the “You’re so young!”’s hadn’t finished for that day, don’t worry! I was almost done with the first bag when an employee came around with a cart with soup, sandwiches, snacks, and drinks; she asked if I wanted anything and I said I was fine, since my mom and I brought a bunch of stuff with us—then she asked where I go to high school and if I was excited to start the new school year. I told her that I was not in school and she responded with, “Oh, so what high school did you graduate from? I hope you graduated before you got cancer!” and I told her that I graduated from high school in 2008 and I was 31. When I said that, her eyes practically shot out of her face like a cartoon. She turned to my mom and said, “Is he telling the truth? How old is he, mom?” My mom followed it up with, “Yeah, he’s 31, I remember him being born!” The woman walked away from us in a daze, muttering things like, “Is he really 31… He’s so young!?”

“You decide what happens. You are the one with cancer—tell us what you want to do.”

When my parents said this, I had been on a weekly treatment for close to two years. I was having nasty side effects from the pills, but the new oncologist I had switched to wanted to see how I did over the next three months. We ended up stopping that treatment at that three-month mark, as the side effects stayed the same.

Being told that helped me remember that even though the pills were a weekly routine at that point, I still had a choice—not the doctors, not my family. I’ve tried and failed a couple of treatments since then, but it has always been my choice what I try; I listen to the doctors, but I always keep in mind that it is my choice and my choice alone.

There’s all kinds of language around cancer, especially in obituaries; “He fought valiantly with cancer,” “She lost her battle”—it’s always phrased in a way that implies that we didn’t try. Every single one of us tries our hardest when dealing with cancer and that for people new to cancer, they might see those things and think of cancer in terms of a battle, when it is an experience, especially for those, like me, who have chronic cancers. During your time with cancer, you’re going to meet some good people, some bad—hopefully more of the former than the latter; doctors, nurses, social workers, pharmacists, receptionists, survivors, patients, and most importantly: your cancer family—your steadfast supporters.

For some, your cancer family might be your parents, your siblings, aunts, uncles, cousins—that “normal” family unit, and for others, your cancer family can be whatever and whoever you want. You have a dog that helps you by making you pet him during treatment? Part of the cancer family! A cat that you see roam around the neighborhood that makes you smile? Sorry cat, you might be a roamer, but you’re part of the cancer family, too!

For me, I am lucky enough to have that “normal family,” but that doesn’t mean I just stick with that. I am a wholehearted believer in “the more support, the merrier” because, and I know this sounds cliché, it takes a village. Going through your cancer experience is hard—family is great and you can have the best caregivers in the world, but I firmly believe that in order to get through to the other side, you need to have some peer support. You might try it and it isn’t for you, but I encourage you to give it another shot somewhere else, just to see what’s out there. When seeking support, you might click with one community and not another. I’ve tried multiple communities, and some just don’t understand where I am coming from as a young adult. They mean well, but, “Well, I just retired and I thought I was supposed to enjoy this, not get cancer!” aren’t exactly the words we need to hear as AYAs, when our adult lives, our careers, are really just beginning. Look around, check different organizations, and check support groups (or supportive peer groups) for people of all ages—what you find might surprise you. You might just be feeling down one day. It doesn’t have to be from treatment or a doctor’s appointment, then you hear that one thing that puts a pep in your step to help you get through the day—that “You look like you feel better today!” or “You look great today,” or something from someone else in a group that really resonates with you, or just something that just puts a smile on your face. If you haven’t heard any of those today, go look at yourself in the mirror and tell yourself something nice—you deserve it.