ERIN’S STORY

When I was 25 years old, I was diagnosed with non-Hodgkins lymphoma cancer. I went from living carefree for the weekends to living for the next scary, unexperienced moment of my life. I never thought, not for a moment, that when the protocol ended and all was said and done, I’d be thankful for having lived with cancer. I moved on as a survivor of cancer, thriving thereafter. With the pain came a balance of bliss, struggles and triumphs, and the beginning of my “new and improved” life.

In the beginning, like everyone who receives a cancer diagnosis, I was overwhelmed by panicked feelings of terror and thoughts of the Grim Reaper and death. Doctors acquainted me with thoughts I’d never imagined, such as: Okay, if this round of chemo doesn’t work just as fast as the tumor’s growing, I’ll be dead in a month.

When they first said I had cancer, I said “Nooo!”
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It was inconceivable. To start with, it was maybe going to be a month of radiation. What? Then, the prognosis changed to six months, and I was distraught, shaking, blank-headed. “WHAT?” There was no calmness in my body at all when I screamed that at the doctors. I was outraged. I was all but destroyed. The doctors and nurses often ended up crying with me. A twenty-five year old girl, facing death. Nobody wanted to face it, and least of all me. I will never forget sitting in the waiting room filling out page, after page, after page of paperwork. My parents, helpless, stunned, sat silently in the cold, plastic, gray chairs on either side of me.

And then. And then! A few weeks later, when they did a biopsy, they discovered that what had been a shadow of a tumor near my heart had turned into an enormous mass of cancer across my chest. It had grown so huge, so fast, that the cancerous mass crushed my windpipe when I lay down; so I couldn’t even breathe unless I was sitting up. When the results were in, it was conclusive. I was facing a two and a half year protocol to treat non-Hodgkins lymphoblastic lymphoma, a rare pediatric disease, with chemotherapy and a month of radiation. It was clear that some of the professionals doubted I’d see the outside of a hospital again. I screamed “Are you kidding me??!!” I thought I’d gotten a grip on the idea of six months. I mean, you work really hard and you finally think you’re getting a grip on what you think it’s going to be and then—two and a half years? And keep your fingers crossed? I couldn’t wrap my brain around it.

I still remember the taste of the medicine in my mouth, bitter chemo medicine, that awful taste that always came through even though it was going through the veins in my arms or, when they collapsed due to the toxins being pumped through them, through the metaport in my chest (with a tube up to the vein in my neck).

In retrospect, now, I grip why there was a need for two and a half years as opposed to six months, or even just one. I couldn’t have done, mentally, spiritually, or personally, in six months, what I did in two and a half years.
​​​​​​​In my time with cancer, I learned how not to give credence to other people’s image of who they thought I was. I learned that it didn’t matter if other people thought I was going to die, or if they thought I wasn’t strong enough, or if they thought I wasn’t pretty any more. In that ​​​​​​​​​​​​​​time, I got to know who I was, truly, deeply, inside and out. I found the rock bottom depth and clarity of my courage (mentally, physically, and spiritually) and identity which includes beauty. And I developed a much more clear sense of the world and those around me. What an enlightening experience!

In the beginning of my time with cancer, I read so many drama-focused cancer books that fixated on the struggles and the terror of the disease that I really wanted to focus my book on the triumph that came out of the struggles—triumphs I never would have had without having had cancer.

But I had the terror, the gut-wrenching fear too. An example was when the tumor was crushing my chest and, as a result of not being able to breathe lying down, the doctor told me I would have to remain awake while he put the tube down my throat to prepare for the biopsy. I remember clenching the bed convulsively with my hands. “You’re going to what? You’re going to put a tube down my throat and I’m going to feel every second of it?” Why is this happening?  I screamed inside to God; and I was crying, “Why are you going to do that?” The doctor broke down and started crying with me as he explained.

I learned gratitude like I’d never known gratitude before. One night at the hospital with a fever and a blood count of zero, after being given a last resort antibiotic also known as “shake and bake” (because first it chills you, deep down, bone-chilling that makes you shake irrepressibly for hours, shake so that your back hurts unbelievably the next day; and then it makes you sweat, sweat buckets of sweat like I’ve never, ever sweat before), I needed to call for the nurse (and I could barely move at that point). I remember finally grasping the nurse’s button on the side of the bed and being so grateful to be able to feel it. It was just a little rubbery stick on a cord, with a clicker, like a pen clicker, at the end. But I got it! I reached down beside the bed, and I triumphed in making my hand grip that little device, and I called for the nurse. The sense of triumph, relief, and gratitude for being alive that I felt in that moment has burned the sensation of that little rubber lifeline clutched in my hand into my mind, and even my heart, forever. It may sound small, but it was such an enormous moment for my spirit.

​​​​​​​I learned many wonderful truths about the glory of life during the times when so many doctors seemed to expect me to die. As a survivor, I take nothing for granted, my life has purpose, my identity is clear, and I am stronger than before. My life changed for the better in ways that I could not have ever imagined.

Someone asked me once if it’s like a club, for those of us who’ve lived with cancer. In a way, I guess it is. Only those who have stared death in the face and have either survived or are still struggling with the disease really get what a fellow patient is going through.

I learned about misery. You don’t have to sustain it;  in fact, you must not allow misery to rule you if you want to get through a bad experience intact. I learned that I had a choice in how I handled and perceived what was happening to me. To the extent to which I had a choice, I chose to be positive and optimistic. Sure, there were plenty of times when the medical protocol got the best of me. Nevertheless, I tried my best to work through the emotions without repressing them, and get back on track with being positive and optimistic with regard to the final outcome—my cure.