It’s All Semantics

What’s in a word, really? (These happen to be from Man’s Search for Meaning by Viktor Frankl, which is perhaps one of the most insightful books I’ve ever read. Highly recommend if you’re going through a tough time).

I don’t know anyone that hasn’t been touched by cancer in some way. Even if you haven’t, you’re still aware that it exists and know the common phrases that accompany the subject. Lately, there’s been some debate regarding various terminology that gets thrown around, so I decided to dissect and discuss some of them. Join me, won’t you?

Fight/Battle

I admit, I’ve used these phrases myself and don’t find much wrong with them. In fact, I still use “fight” because some days I literally feel like simply going through my everyday life is a fight against this overwhelming desire to retreat from society, lay in bed, pull the covers over my head and let the fatigue and anxiety consume me. So yeah, I do feel like I’m fighting in a way, just not in the physical sense, since I can’t exactly go all Innerspace and battle the cells to the death with my own bare hands. The best I can do is choose a method of treating it that limits the casualties. After that, it’s out of my control.

Warrior/Hero/Inspiration

Here’s where it gets a little tricky for me. I personally don’t like the idea that I’m being put on a pedestal simply because I got cancer and am trying to stay alive. It doesn’t make much sense to me, and, admittedly, makes me uncomfortable (but don’t get me wrong, I may get awkward about it, but I always appreciate the sentiment). Being called a “warrior”, “hero” or “inspiration” for that reason seems to imply that I’m special because I got cancer. Nothing could be further from the truth, and I make it a point to state that outright whenever I can. I’m not special. None of us that have gotten cancer are special. If you think that we’ve got some power that you don’t, it further perpetuates this idea that “it can’t happen to me.” Yes, it very well could happen to you, just like it happened to me and millions of other people. That’s why it’s so important to stay on top of your health. And if it does happen to you? You’ll likely do the exact same things we’re doing, because you find strength you never knew you had when your life is on the line.

However, there are instances when “hero/warrior/inspiration” can be warranted when referring to a cancer patient.

For example:

Hero – We’re heroes when we tell our stories. We’re heroes when we put all of the uncomfortable symptoms/side effects/struggles out there because we could very well be saving someone’s life. Whether it’s the person that decides to go to the doctor and get checked out, or the fellow patient that realizes they’re not alone in the way they feel or react. We’re heroes when we sign up for studies and trials that could advance treatment options, when we answer surveys that could help mitigate side effects, and when we pick up the phone for the friend of a friend that just got diagnosed. We’re heroes when we help each other through it. Tell us we’re your hero when we’ve convinced you to go for your own screenings. Knowing that something I said triggered your need to take care of your own health means more to me than anything else you could say.

Inspiration – We’re an inspiration because of how we’ve chosen to handle a really difficult situation. We’re inspirations when we choose to see the silver linings and turn it into something worthwhile. We’re inspirations when we can hold our heads (bald or not, not all cancer patients lose their hair, guys) high and accept the cards we’ve been dealt. So if how we’re doing it inspires you to move through your own difficulties, then yes, please tell us so.

Warrior – The phrase “warrior” does imply a certain amount of fortitude, and in the case of cancer, fortitude is definitely a prerequisite. It takes a lot of it to walk into that treatment center every time knowing how you’re going to feel afterwards. It takes fortitude to live your life as well as you can while going through it (something I definitely struggle with). It also takes a certain amount of fortitude to accept that which you cannot change, and to plan for the worst case scenarios, which brings me to my next phrase…

Lost Their Battle

No. Nope. No. I hate this one and I hope no one uses it if I die from my cancer. It implies that the cancer was stronger than the individual, and while that may be true physically, in my opinion, mental strength is even more important. To me, there is no stronger person than the one that can accept their fate with grace and dignity. The cancer patient that chooses to let their life come to an end on their own terms–and make plans for their loved ones’ lives after they’re gone–is a hero to me. I know I’m not that strong yet. I know that if it comes down to it, I don’t have it in me to stop searching for treatment because facing the fact that I would have to say goodbye to the people in my life is too much for me to bear. My strength, therefore, is limited. The patient that dies from cancer has never been as strong as they were at the end of their life, and please don’t weaken that by saying that they “lost” in some way.

Patient or Survivor

Eeek. This one is tough because I feel like they flatten the cancer experience into black or white–you either have cancer and consider yourself a patient, or you don’t and consider yourself a survivor. But if you’ve been through all of this time and time again, you know there’s a whooooole lot of gray area in between. I’m one of those people that live in the gray. Right now, there’s evidence of disease in my body, but it’s dormant. I’m on a break from treatment, but my scan next month could show growth, in which case I go back in. I’m essentially incurable through standard methods of surgery and radiation, but it seems at bay for the time being. So I’m not exactly a “patient”, but I’m also not a “survivor”. So what do we call me? Telling people I’m “living with cancer” is just too clunky and always requires more of an explanation. “Cancer-afflicted”? “Cancer-ravaged” isn’t really pretty, but it’s definitely an accurate description for many of us. Even if those mutant cells are gone, they’ve left a whole lotta crap in their wake, no? Either way, there doesn’t seem to be a one-size-fits-all term.

Cancer-Free

I’ve learned my lesson with this one. I remember getting the results of my first scans after treatment and proclaiming myself “cancer-free” on social media. There was an influx of congratulatory messages, excited “YOU BEAT CANCER!!!” texts, and a feeling of relief that I could finally move on with my life because cancer was in my rear-view mirror. Oh, Allison, how naive you were. I didn’t really listen when my oncologist specifically used the phrase, “no evidence of disease.” What I heard was him telling me that I didn’t have cancer anymore, when in fact, it was just that they couldn’t detect any of the cancer at the moment. After two recurrences, I’ve discovered that these are two very different things. Cancer is a tricky, tricky little beast. It hides. It starts out so small that it can travel without being detected. It’s not always visible to the naked eye, so even when they’re looking directly at it during surgery, they can’t tell if they got it all. But because they can’t see it doesn’t mean it’s not there. So when my cancer came back, I was rightfully devastated, and now also embarrassed because I had enthusiastically declared myself “cancer-free”. I’ve since learned to try to manage my own expectations (and the expectations of others in regards to my condition) by remaining cautiously optimistic, understanding the limitations of medical diagnostics, and using the correct term, “no evidence of disease” or NED. Can we all collectively commit to try to replace the term “cancer-free” with NED in our vernacular? While we’re at it, let’s add “evidence of disease, but dormant” to the lexicon as well. That would really help a girl out here.

Cancer Journey

I know this one really fires people up. A “journey” seems to suggest a nice little trip. Cancer is definitely not a holiday in Tahiti . When this term is used, many cancer patients get upset because it seems to invalidate the gravity of what they’ve gone through. It also seems to imply that it’s a set period of time, which, for many of us, isn’t really true. It just becomes your life. But if we don’t use “journey” or “battle”, what should be used? I admit that I pulled up the ol’ Thesaurus to try to settle this once and for all, but every synonym for “journey” just seems too positive and light. “Experience” kind of sounds like you’re talking about skydiving or parasailing. Maybe “tenure as a cancer patient”? I think I know a few people that would agree that sometimes, “in the throes of cancer hell” or “shitty situation” would be more accurate.

Finally…

New Normal

When I was on auto-pilot during the first few months of treatment, this term kept popping up. At that point, I was still naively under the impression that I would be one of the lucky ones that would finish treatment, be cancer-free and go back to my regularly-scheduled programming, so I refused to wrap my head around what “new normal” meant. I was not prepared for how life-changing it all was, just starting with diagnosis. Once you’ve heard the words, “you have cancer”, your life will never be the same. Every pain you feel tends to be met with terror. Every sympathetic look makes you feel self-conscious. Even attempting to plan for your future starts to be painful because you have no idea how much of that future you’ll have. To me, this idea of a “new normal” is a reminder that I’ll never be able to return to the old normal. As with anyone that goes through something profoundly traumatic, it takes a while to accept that. So forgive the cancer patient that bristles with the mention of their “new normal”. It’s a scary prospect that you’ll never be as carefree as you once were.

All of this having been said, I’m of the mindset that taking offense to general terms is a waste of energy. Even though I’ve gone through and pulled apart the cancer lexicon, it’s simply to promote awareness, dissect my own feelings on them, and explain some of the backlash. But it you call me a “hero”, I will always smile. If you ask me about my “cancer journey”, I will answer kindly without a second thought. I don’t believe in being picky about how people describe my situation. In the end, everyone just tries to do their best, and using the wrong word shouldn’t be held against them. I certainly don’t want the cancer laymen to feel that they have to walk on eggshells around me because they’re afraid of upsetting me (it’s bad enough that you feel somewhat isolated because no one wants to tell you of their own troubles since they “don’t compare to cancer”. Please, keep me up-to-date on your life. It gets lonely around here). I will also jump up and down screaming the next time I see one cancer patient shaming another cancer patient for a term that they used. The way you feel, talk and respond to your diagnosis and disease is one-hundred-and-a-million percent personal.

Good Mourning

It could be something as little as not being able to fully bend down to pick up a sock on the floor that sets it off. You start to think, ‘when did this become difficult?’.

That one little action inevitably snowballs into a complete breakdown. You realize that it’s been literally years since you’ve had a day where you weren’t in some sort of pain. Back when your significant other didn’t instinctively reach out to help you up from the couch because your core muscles have been destroyed by surgeries. When you could lift more than 15 pounds without worrying about a hernia. When you didn’t have to hope that someone on the packed subway would give you their seat when you’re struggling to hold up your own weight. When you didn’t have to take breaks on the stairway and usher people by you so they didn’t get angry. When you could carry the cute little clutch instead of a ginormous tote bag stocked with medical supplies every time you left the house. When you could wear a bathing suit without worrying about covering up the unnatural lines and marks that now traverse your skin.  When a headache was just a headache, and didn’t immediately strike fear of metastasis (and when you didn’t even know the word ‘metastasis’).

Indeed, those were the good old days when you got a party invitation in the mail and didn’t have to check the calendar to see if it was a treatment week. When you could make plans for your future that stretched past your three-month scan mark. When you could dream about what your kids would look like and wonder if they’d have your eyes. Hell, back then you even stuck a pillow under your shirt to see what you’d look like pregnant. When your fear of being judged in social situations was based more on your choice of outfit instead of your disability. When there was no need to hesitate to book a hairstylist for your wedding because you weren’t sure if you’d even have hair. When you didn’t worry that the vows you were writing were going to have an expiration date. When you saved money for retirement without thinking that you may not survive long enough to need it. When you made plans to move based on a new job or exciting locale instead of the close proximity of family members that will be able to drive you to treatment.

No matter how well you accept the hand that’s been dealt to you and learn to live with it, there are still times when it hits you like a ton of bricks. I’ve found that it’s actually good to have those moments where the gravity of your situation overwhelms you. It’s ok to respond to a “stay positive” comment by explaining that there are just times when you have to allow yourself to feel the sadness and anger that accompanies cancer. The fact of the matter is that there will always be this underlying sense of mourning for the life that you used to have, for the plans you used to make, for the blissful naivete that existed before you heard the words, “it’s cancer”.

Then, when your puffy red eyes start to dry, pick up the damn sock, throw it in the hamper and make plans for tomorrow. Because, for today, you still have a tomorrow and there’s no use in wasting it by dwelling on the things that you cannot change.

Write about it.

In my head, it all happens in slow motion.  

I’m curled up on the exam table the doctor finishes her exam.  “Ok, you can sit up,” she says.  I assume the requested position but the look I see on her face as she takes off the gloves is much different than the relaxed one that she was wearing earlier.  “Ok, so before I go any further, I want you to know that colon cancer is one of the most curable forms that there is, and rectal is even more responsive to treatment…” she says.

At this point, things get a little hazy.  To me, it’s not my real life.  She didn’t just tell me I had cancer, she told a character that is playing me.  She’s still talking in the background, but all I hear is a series of murmurs like the teacher in Charlie Brown.

“…so I want you to come back for a colonoscopy as soon as possible.  I’ll come in early to perform it for you, if necessary…”

I felt the tears start to well up in my eyes.  Here, she stops and looks at me.  “Are you ok?” she says.

She hands me a box of tissues and then slowly moves towards the door.  She grabs the door handle and reaches up to hit a large button adjacent to the door jam.  I’m pretty sure she was silently calling for back up: “I JUST DROPPED THE BOOOOOMB!!  SOMEONE COME IN AND CLEAN UP!!!”

And there I was.  A girl and her cancer.  Alone in a doctor’s office with the complete Hall and Oates musical catalog serving as the soundtrack to the scene.  I shifted a bit on the table and the familiar uncomfortable feeling that I’ve had for months came back.  Only, this time, I knew it was a tumor.  I felt my cancer.  

With the tears still streaming down my face, I reached for my phone.  I pulled up my text messages and tapped in the name “Ryan”.

“I think they just told me I have cancer,” I wrote.

“What?!” blinked back on the screen.

“She did an exam and she just told me that she thinks I have cancer.”

“Is she sure? I mean, you have to have other tests, right? I bet it’s not cancer.”

“They’re setting up my appointment for a colonoscopy, but you should have seen her face.  It was like she was looking at a dead man walking.  She seems pretty positive that I have cancer.”

The door to the exam room creaked open and a tiny blonde girl sheepishly walks in.  Poor thing couldn’t be more than 20 and they send her in to clean up the casualties.  “Ummm, the doctor wants you to come in as soon as possible for a colonoscopy.  The earliest appointment I can give you is Monday at 8:30am.  Does that work for you?” she asks.  I quietly laugh a bit to myself and consider answering, “no, I have a tennis game that morning”.  “Yes, of course,” I respond.  She then goes through the litany of test prep instructions.  This is not exactly the weekend that I had planned.

I grabbed my jacket, and with tears still spilling down my face, I made my way down the hall towards the exit.  In my mind, the staff behind the desks all ceased movement and stared at me with pity.  ‘They know,’ I thought to myself, even though I knew that wasn’t the case.

People say it all the time, but the worst part about a colonoscopy is the prep. Drinking 64 ounces of anything is a lot for the stomach to handle.  At one point, I swear I poked at my abdomen and watched it ripple like I just threw a rock in a still lake. 

The day of the colonoscopy, I open the door and scan the waiting room.  I am absolutely the youngest person here.  It’s me and eight 60-year-olds peering up at me with the look of confusion as I check in.  Yes, I am a bit young to be coming for a colonoscopy.  No, I’m not doing it for the experience, there are a few extenuating circumstances here…

When they call my name, I’m set up in an exam room with a nurse taking my vitals.  “Ok, we’re going to need a urine sample before we can begin,” he says. “Ummmm, I was told not to eat or drink anything since midnight last night, that might be a little tough,” I respond.  “I know, it’s going to be difficult, but we can’t proceed until we make sure you’re not pregnant.” Bless his heart. I know he’s doing his job, but it’s really hard to produce any fluids when you haven’t put any fluids in your body for 12 hours.  This, I’ve come to learn, is just the first of the many contradictory practices that I will face while running the gamut of modern medicine.

After performing a miracle and confirming that I was not, in fact, with child, they wheel me in to the procedure room where they hook me up to an IV and give me the good stuff.  Propofol sleep is the best sleep ever.  It’s magical. When you wake, you’re in a state of bliss where you’re floating on a fluffy cloud of pretty pink fairy dust while delightful little cherubs flit about around you. Sadly, my cherubs started to take form rather quickly and soon I was peering at the face of my doctor as she was asking if I was awake.  Around her shoulder, I see my worried mother rocking in the chair with my father standing stoically at her side.

“Yes, I’m awake,” I respond.

“Ok, well I’ve confirmed that it is cancer,” she starts.

At that, my mother lets out an audible gasp and my father leans back against the doorway that seems to be keeping him vertical. I blink at them, both for clarity and to flush the tears that were starting to fill in my eyes.

“You have a tumor, it’s about 3.5 centimeters.”  I can barely grasp how large a centimeter is when I’m not hopped up on anesthetics, let alone now.  “I did my residency at Sloan Kettering and they will take care of you there.  It’s very treatable, and they have great success rates,” she finishes.  At this point, my mother turns and starts firing off questions and I put my head back on the pillow.  Being in this exam room is not helping my situation.  In my head, I get up off of this gurney, hop in the car, march into Memorial Sloan Kettering and say, “I’ll have some chemo, please.”

When you’re told that you have cancer, you develop this overwhelming urgency to get it out of you as quickly as humanly possible.  Knowing that you’re sitting there with a time bomb ticking away in your body is the single most frustrating thing that I’ve ever experienced.  Before you can even start treatment, you need a litany of tests and scans and have to go through office upon office before an oncologist will even meet with you.  To me, none of the people that I was dealing with were moving fast enough, but at the same time, I had to sit back accept that they needed to put the puzzle pieces together. Now I fully understand why they call us “patients”.

Little did I know at that point that it would be two months to the day before I was going to start the treatments that would hopefully save my life.