Transformation

11 Oct

    

        It’s 1977, and she’s a senior in high school. The only thing on her mind should be filling out college applications, hanging out with friends, and going to beach parties, but she doesn’t have the luxury of thinking about such mundane things anymore.

She has leukemia.

She’s already been through chemotherapy—all of her thick, sun-bleached hair is gone; clumps of it came out in handfuls, spilling onto her pillow, clogging the shower drain. Her bronze skin has paled and dark circles hover under her eyes like delicate teacup saucers. She’s vomited so many times it feels like her insides have been ripped out.

She thought she had beaten it; her cancer had gone into remission for nine months, but now it’s come back, and she’s so afraid. Her only chance for survival is a bone marrow transplant.  She longs to talk about her fears with someone—with her parents, her friends—anyone—but she’s afraid she’ll make them sad. So she keeps silent. She wants to believe that this is not her fault.

She doesn’t think of school, or dances, or boys.

She thinks only of wanting to live.

Terri Toon in her senior yearbook photo

 Over thirty years ago, when I was a freshman at Dos Pueblos High School in Goleta, California, a girl named Terri Toon was very ill with cancer. She had been diagnosed with leukemia when she was a junior and had been in remission for nine months when she relapsed. Terri was only sixteen when she found out she had Acute Lymphoblastic Leukemia—the very same kind of leukemia that my daughter, Isabella, had.

Because her relapse meant that the standard treatment for leukemia would not cure her, Terri’s only hope for survival was a bone marrow transplant. Although her younger brother turned out to be a perfect bone marrow match for her, Terri’s family had no insurance coverage to pay for the 75,000 dollar operation, which at that time was considered experimental. As word spread about Terri’s situation, our high school and the community rallied together to raise money for her transplant; through donations and fundraisers, over 170,000 dollars was raised for her treatment and care.

Although I didn’t know Terri personally, I knew who she was, and often saw her walking through the halls on campus. She was a stately girl, with long, tan legs and a shy smile. She wore a short brunette wig to cover her bald head.

Once, during first period, Terri’s voice resonated through the school intercom system. In a confident tone, she thanked everyone for their financial and moral support, expressing her appreciation toward the student body for all their help with the fund-raising efforts.

“Hi, I’m Terri.” Her voice reverberated through the classrooms, “I love life and I love you and I’m going to live.”

It seemed as if everything was going to be all right after all; the student body, as well as the community wanted so badly to believe that she would make it through her transplant and be cured.

She never had the chance. On March 20, 1977, a massive blood infection took Terri’s life before she could even have the transplant.

She was only seventeen years old.

I was saddened by Terri’s passing, but in truth, it didn’t greatly affect me. I was a typical self-centered teenage girl—too immature at that time to understand such intense pain and loss. After Teri’s death, life continued on for me and my high school friends almost like the events of the past year had never even happened.

In June, when the yearbooks came out, I cried a little while reading the dedication to Terri, but soon enough, my yearbook, the pages covered in messy, teenage scrawl, was put away up in the closet as summer beckoned me to the beach. My mind was occupied with other more important things—like slathering my body in baby oil to fry in the sun, or flirting with older boys while working at my first job at a pizza parlor.  I forgot about Terri.

After high school, I went on to graduate from college, get married, have children, buy a home. For me, leukemia was just a word that I’d hear every so often in passing; at one time or another I may have thought briefly of Terri, but probably not. Because cancer had not affected me personally, I was content in my little bubble of oblivion.

At least I was, until exactly thirty years after the death of Terri Toon, when my own two year-old baby girl was diagnosed with leukemia. I was oblivious no more.

As a mother of a child who had cancer, I’ve experienced the gamut of emotions that go along with this devastating diagnosis: paralyzing fear, hopelessness, rage, acceptance, and ultimately transformation.

But it wasn’t my body that was exploding with deadly cancer cells—it was my daughter’s, and she was really too young to understand what was happening to her. It was more about my pain than hers. And it was my emotional distress that affected me most, because I was her mother, and the thought of losing her was unfathomable. But it must be a completely different kind of anguish when you are diagnosed with cancer yourself.

What must it be like to be a teenager with cancer?

I honestly have no idea how I would’ve handled it if I had been diagnosed with cancer as at age sixteen. How does any teenager cope with such a grim reality?

How did Terri feel knowing what was in front of her?

My friend, Robyn, who is the hospital pediatric social worker, sent me a poem written by a young girl who recently went through treatment for Lymphoma (cancer of the lymph system).

Olivia Lafferty is a junior at the same high school that I attended so many years ago. She’s beautiful, artistic, and has many friends—she’s just like any normal teenage girl—except for the fact that she can intimately understand what Terri experienced so long ago.

Olivia wrote the following poem for an English class assignment. I was so moved by her description of her experience—her pain, her fear, and especially her transformation.  I asked her if I could share it with all of you, and she graciously agreed.

Olivia Lafferty during her treatment for cancer

 Adaptation

       By Olivia Lafferty

I have known life, I have felt death,

I remember the beeping of poison machines

All of it surging through my veins,

Killing me, saving me, changing me

I would lay waiting, as my pain grew, and the monster inside of me shrank

These chemicals peeling off my skin and guiding me through a metamorphosis

And in the process, two liters of blood burned, and my lips  turned blue

I know how it feels to have lost all hope, and to find a friend in only the ink of my pen,

My memories guiding my finger putting sentences together that made no sense,

But none of what happened made any sense, so then, it did.

People I knew, they would say, “you’ve changed so much, you’re not the same, it was him, wasn’t it?”

But it was this poison, my savior, my enemy,

And with every word that was spoken, a lake grew in my throat,

And it’s not my fault, it’s not my fault, it’s not my fault.

Then, it STOPPED

And I stopped pretending that I felt nothing,

I cherished my hairs as they grew, even though they were dead, and did not matter

I was still that girl who disappeared in November, but I was much less and much more

Now I can do anything, now nothing can stop me, nothing except that little girl who is no longer me,

She is dead to me, the poison killed her

I’m sorry if you can’t understand that I am different, but I am brave, I am better. I am not the poison who changed me

I won’t ever completely know what Olivia endured while dealing with her cancer—I don’t ever want to know. In reading her words, though, I’m offered a glimpse into the world of terror and pain that she lived in during her cancer treatment. Through Olivia’s words, I believe I have a better understanding of the emotions that Terri must have experienced so many years ago. Perhaps through those same words, Olivia’s friends and classmates will be able to better understand, too.

Olivia and I don’t appear to be anything but normal people, but in one small way, we are exceptional because we’ve been tested by circumstances both terrifying and unimaginable, and we’ve not only survived, but blossomed. We’ve been soundly knocked down to our knees by this thing called cancer, and yet we’ve managed to get up off the floor, our spirits intact.

We’ve allowed it to transform us into something better than we were before.

Olivia Lafferty is just a normal teenage girl, except that she’s not.

Olivia, expressing herself through her art

Olivia, today, wearing her Dos Pueblos Chargers shirt

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9 Responses to “Transformation”

  1. Kay Bess October 11, 2011 at 9:24 pm #

    Oh my god, such a flood of memories… I’ll never forget Terri Toon… Great post, Jessie. Historical, relevant, woven together so well… And Olivia’s poem is AMAZING.

  2. Allegro non tanto October 11, 2011 at 9:43 pm #

    Isn’t it haunting? I got chills when I first read it.

  3. Becky Green Aaronson October 11, 2011 at 8:47 pm #

    I literally have a knot in my stomach from your powerful writing. You give such great perspective in this piece, and whew, that poem…it knocked my socks off. Wonderful post.

    • Allegro non tanto October 11, 2011 at 9:55 pm #

      Thank you, Becky. Olivia is a beautiful girl and a wonderful poet. I’m so glad her poem touched you.

  4. Cyndi October 12, 2011 at 6:51 pm #

    Olivia is awesome. So beautifully said. Jessica, you are inspiring. Hugs

  5. Allegro non tanto October 12, 2011 at 6:59 pm #

    Hugs to you, too, Cyndi!

  6. happykidshappymom October 19, 2011 at 8:50 am #

    This post was almost too sad to read. But of course I did, and I thank you for writing it with so much honesty. Please pass on to Olivia that she seems to have found a calling in the world of writing too! A remarkable poem. I feel so heartened to know that you both have found a happy ending to your stories, and I will carry that with me as I pray for my own family members and friends and those unknown struggling with similar issues.

  7. Allegro non tanto October 19, 2011 at 9:29 am #

    Olivia is remarkable! I just got an email from her telling me that because of some secondary infection from her treatment, her hair started falling out again (this exact thing happened to my daughter, Isa, and it was almost more traumatic than the first time!) Rather than living with thinning hair, Olivia decided to shave her head again–and her boyfriend helped her do it! Kudos to brave Olivia!

  8. Stephanie Vitacco October 28, 2012 at 4:22 pm #

    I lived in Goleta at the time. I was 10 years old and remember hearing that Terri Toon’s family needed money for the surgery. I took an empty jar and went door to door collecting. I have no idea how much I collected – it probably wasn’t much – but I remember my Mother taking it to them along with so many others who rallied to help. It had such a profound impact that someone just a few years old than I was going through such an ordeal. I was told that she chose to have the Eagles song “Fly like an Eagle” play at her funeral/memorial. To this day when I hear that song I still think of her and her family.

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