Cancer Defined. Me, Redefined.

Editor's Note: This is part of Amber's series Surviving Cancer: A Personal Journey. Please see other posts in this series.

For a moment, consider the word cancer. What images and thoughts occur? What stereotypes do you think of? Does a lot come to mind, or not much at all? I’m not suggesting there is a right or a wrong, but I do believe that, sometimes, we don’t take the time to consider the significance words hold.

Admittedly, prior to my diagnosis, I lived a safe distance from the word cancer. It happened to other people. It even happened to some important family members when I was younger, but there was still no way it was going to happen to me. I could keep cancer as the colored ribbons for solidarity; as the bumper sticker on the car in front of me, prompting pause to think about that car’s driver until the light turned green; as the flexed-arm emojis exclaiming You got this!; as the commercials talking about miracle funds that I’d donate to later. It was a common word that held a vague meaning.

And then cancer became a word that invaded my personal space, bringing other words with it that I never in my life saw coming. Creating a significance that not only defines the word very differently for me now, but that now defines me.

Read About the First Days After Amber’s Cancer Diagnosis

I’ve heard this statement many times throughout my cancer experience: “Don’t let cancer define you.” And while I get the sentiment of that phrase, cancer has forever changed me. And I think it’s OK that I’ve allowed it to do so. And even more than that, I think it’s OK to give space for cancer patients and survivors to allow cancer to change and define them, too. It’s from this space that I’d like to offer some tangible context to help this word get the pause and the consideration it deserves. Certainly, something that would have helped me back when I kept it distant and vague, as well.

Since my very first cancer appointment, I’ve been keeping a journal. From that journal, I not only have thousands of words that have captured my cancer in its totality, I also have the numbers that help tell the story: 

• 258 weeks that cancer has invaded my being
• 7,453 total hours in or recovering from my 282 cancer appointments to date
• 165 different times where I was naked and touched by a medical professional
• 144 times a picture was taken of my naked body to be used for evaluation
• 114 separate times where my body was cut into, poked by needles, or internally examined
• 15 separate surgeries with anesthesia, which translates to 15 times my life was literally in the hands of another
• 38 unique and separate physical scars between my neck and my knees from those surgeries
• 414 days of wearing a compression garment of some kind
• 18 rounds of chemotherapy in 21-day cycles over the course of 12 months
• 29 treatments of radiation 5 days a week for 6 weeks

And I haven’t even done the math on the literal dollar amount these numbers add up to.

I’ve heard this statement many times throughout my cancer experience: “Don’t let cancer define you.” And while I get the sentiment of that phrase, cancer has forever changed me. And I think it’s OK that I’ve allowed it to do so.

The astonishing thing is ― if you take each number and equate it to its cost in vulnerability, in anguish, fear, and grief, in faith and trust, in constant and relentless necessary emotional adaptability, in loss and gain, in anger and gratitude, in the free fall of confusion into the unknown ― you still don’t really get the full picture of what cancer is. The INside of its word.

Each of these numbers represents the collateral that goes with it. Collateral that not only speaks of me and my whole self, but of my husband and my children, my mom and my dad, and my family and my friends. Collateral that has a direct impact on each of these relationships — me “the patient,” and them “the caregivers.” Collateral that causes an automatic disconnect between us: neither side wants the other to know what it is really like on their side because, as it turns out, both sides are tragically hard.

Collateral that brings trauma. Collateral that requires the redefinition of everything feminine, as breast cancer has stripped me of it all, literally. Collateral that forces the redefinition of identity, as that too has been completely undone. Collateral that demands the redefinition of relationships, because if I’m a totally changed person, so must my relationships change. Collateral that changes the way my employers must treat me and how I interact with my colleagues, how productive I can be, how difficult it becomes to secure income and the ability to provide for life’s basic needs. Collateral that stretches and strains normalcy. Collateral that turns everything known and secure upside down and inside out.

I’m gonna get really real here. All throughout my story, I’ve experienced the minimizing of my cancer:

“At least it’s not …”

“In order to heal, you have to move on.”

“Cancer is so common.”

“Wow, so-and-so has done cancer so well. Why don’t you try and be like them?”

“Don’t just try to survive it, go for thriving in it.”

“You’re still talking about this?”

“Don’t be so stuck in the past.”

“You’re all good now, right?”

“Everything happens for a reason. You know that, right?”

The problem with these phrases (and all of their derivatives) is that none of them account for the cost of being diagnosed with cancer. Of any kind. At any stage. Not the dollar amount cost (which is high), not the physical cost (which is really, really high), not any of the emotional and relational costs (which are overwhelmingly high). And this so often happens because, unless they’ve experienced it personally, many people keep the word cancer at a distance — vague, black letters on a white page, lacking true meaning — much like I did before I got that phone call on that one Friday in August almost 5 years ago.

It's so much easier to keep words like cancer at a distance because their realities are heavy. It’s easier to keep those realities safely symbolized by ribbons and bumper stickers, emojis and commercials. But I’m here to say that the truth is vital to expose, even if the truth hurts.

In all the wretched hardness that my cancer has been, in all the ways it changes me — and at the enormous cost that it does — my gratitude runs deep for my transformed perspective and capacity for empathy because of it all.

Empathy grows from a place of perspective. Acknowledging the truth of something and then connecting it with relatable truths from any other story. Vulnerably feeling with another and accepting that it (whatever “it” is) goes much deeper than the ease of ignorance and platitudes and clichés. By vulnerably and authentically exposing my truth of how cancer changes me, perhaps you can use it to change you, too. That my 60 months, 258 weeks, 1,806 days, and 43,344 hours INside the word cancer will help you give those in your life, those patients and survivors, the space to feel seen in their cancer story; and more importantly, to be valued in their transformation. And if you are someone surviving cancer, at any point in the story, here’s a message just for you: 

You matter. Your cancer matters. The changes you experience matter — big or small, many or few, and everything in between.

In all the wretched hardness that my cancer has been (from diagnosis through treatment and now, in survivorship), in all the ways it changes me — and at the enormous cost that it does — my gratitude runs deep for my transformed perspective and capacity for empathy because of it all. I hope the same for you.