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!” 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 at least a two and a half year battle against 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 battled 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 compare it to when someone is planning a wedding or having a baby: I didn’t know what it was like to have children when my cousin Patti had her first child. She and I are very close, more like sisters than cousins, but when she married and then had a baby ten months later, it seemed as if we had a lot less to talk about. I was still living for the weekends at that time, so I couldn’t appreciate how difficult it was to raise a child until I had my own seven years later. I was only able to imagine the difficulty. For me, it’s the same thing with cancer.

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.

It was interesting to see how each of my family and friends reacted when they found out that I had cancer. Some were concerned about what now seem like trivial matters such as my hair falling out, others were afraid I would not be able to partake in happy hour with a few cocktails, and still others were desperately saddened by what I had to go through regarding my protocol. But they all went out of their way to make sure I was doing all right. Being surrounded by their love and support was such a gift.

I used to believe my hair, auburn, wavy, and halfway down my back, was a significant part of my personality, that how I styled it was a major statement about who I was and how I was feeling. Before losing my hair, I had a particular look that I favored for years—way too many years!

Just as I had refused to change my 80s hairstyle before cancer in 1991, I was reluctant to change much of anything about my life. Cancer and chemotherapy brought change into my life whether I wanted it or not. The funny thing is that before the chemo, I really did need a serious makeover!

My hair fell out five times due to two and a half years of chemotherapy—about every six months. I would just manage to grow it back into a cute, short hairstyle, and then they would give me the Adriamycin again and it would all fall out.

The first time my hair began to fall out, I was in the shower. As I shampooed, clumps of wet red hair wrapped themselves all over my hands and arms, clinging to my face and blinding me with disgust. It was like being covered in bugs. I screamed, cried, and punched walls. It went on falling out for days. Even though I was told what to expect, it was impossible to be prepared.

However, I learned a lot from that first hair-loss experience. It was always traumatic, but I developed a technique. I put on my favorite music, nice and loud, and I pulled the loose hair out and let it fall directly into a paper bag. There was no mess to clean up, and I was the one removing the hair from my scalp. I was in charge of how the process took place. The process no longer had control over me.

One time, when I was in a public restroom, a woman I had never met before said, “I love your hair. Would you mind giving me the name and number of whoever does it?” “You can’t afford this hairdo,” I said, smiling. “I have cancer and I’m going for chemo treatments. This is a wig. My medical bills are ridiculous!” She laughed with me and told me she loved my attitude.

Eventually, I became daring and creative with my hair, and with my life. Now I enjoy trying new approaches. I know I’ll always be me, full of pride and a complete sense of who I am, no matter what I look like, where I am, or what happens to me. My mind, body, and spirit reunited making me whole fundamentally. What a wonderful feeling!

I’ve heard people say that doctors have the power to decide whether we will live or die. How intense! I decided it was up to me, and God, whether I’d live or not. I developed a fierce determination to defy the charted statistics. Cancer forced me to don my armor and unsheathe my sword—I declared war! Courage was something I always knew I had, but never realized to what degree. Once I drew on it, I reached a better understanding of its depth. My own fortitude carried me through the worst of times.

The doctors told me I’d never have children after the chemotherapy/radiation protocol, and would probably go through early menopause. I knew since the early days when my husband was just my friend that he had always dreamed of having a son, and after I was well I wanted nothing more than to make that dream come true. I prayed to God day and night, asking Him to bless us with a child. Using visualization techniques, I projected the image in my mind’s eye of us having a child. I refused to believe that I could not get pregnant, just like I refused to believe the doctors who said that I would not be cured of cancer. I never gave up on the idea that, one day, we would have children.

Indeed, we do. Three wonderful children prove that the doctors were wrong. I did not die, and I did not lose my ability to become a wife and mother, even a successful career woman.

I want other cancer patients who are in that funk, that dark place, to understand that I was depressed, anxious, and terrified, too. But cancer helped make me the woman I am. I have included enough of the fear and the medical reality of the story for other cancer patients to be able to relate… and then I share the wisdoms I was given during my cancer journey. Even people who have never had experience with cancer have read my book and told me they gained much from the insights I’ve been able to share.

My book offers readers experience, strength and hope, not pop psychology. This book is not just a graphic description of horror and fear as some other cancer survivor books are. I have read those books. I’ve been down that path. This book is for adults & young adults who have encountered the cancer diagnosis and proves that some of the simple spiritual things I did HELPED and WORKED for me. I focused my book on what made it possible for me to get through my encounter with cancer intact. It was written to help reduce depression, diminish anxiety, decrease physical pain, and to get the reader to truly grasp the notion that they too CAN SURVIVE a cancer diagnosis and THRIVE thereafter, no matter what the odds are, no matter what anyone says, no matter what type of cancer it may be. And not just survive and thrive, live on to be stronger than before. I’m LIVING proof it’s possible. I was in that cold room, prepping for a procedure or surgery, thankful for the slippers they allowed me to wear on my feet. Or, coming to the outrageous realization that having strangers see me undressed was the norm. Feeling like a human pin cushion was second-nature. Nevertheless, regaining my health was paramount, as I’m sure those reading my book understand, or feel the need to understand, as no one else can. Readers have said it is about hope, inspiration, and empowerment! It shows the action of a true marriage between traditional medicine and the holistic approach: how I found my center and watched the cancer get wiped away. I offer a candid look at chemo and radiation, meditation and visualization, and faith and prayer, and how they worked for me. My message to the readers is: “It worked for me. I defied the odds. So why couldn’t it work for you? You have nothing to lose and everything to gain.”





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