Sunday, September 2, 2012

The Unchecked Box

When I was about 10 years old, I read a book by Lois Lowry, called A Summer To Die.

In the book the protagonist describes her 10 year old sister's battle with cancer.  Leukemia, I think.  I remember gripping the sides of the book in fear, wanting badly to put it down, look away, but unable to force myself to do it.  I had to know - does she die?

She died.

And my life-long fear of cancer was born.  When I was twelve I had some stomach pains and spent a week barely functioning, convinced I had stomach cancer.

Even as I grew into adulthood, cancer terrified me. If I saw someone bald, someone clearly sick, I had to look away. I never read about cancer stories; I did everything in my power to avoid thinking about it.

My friends would tease me, because every little ache and pain I had was - in my mind - a symptom of cancer. It became kind of a running joke: oh, there goes Ellie, she has cancer again.

Even when my father was diagnosed with Lymphoma (which was a 'watch and wait' kind of cancer and a splenectomy successfully put him into full remission for seven years - he never had to have chemo or radiation) I didn't really think of him as a cancer patient.  Maybe because he didn't look sick - ever. He never lost his hair. He didn't lose weight.  When his spleen got enlarged they removed it and that, we all thought, was that.  His sudden death last June (because he didn't have a spleen to fight back an infection, which led to sepsis) still didn't feel like a cancer death.  Or, perhaps, I was too scared to think of it that way.

Then, last November, it happened.  My lifelong fear: I got cancer.

I expected to fold up like a lawn chair, give into the fear.  That didn't happen.

Instead, during the fight, during treatment (as awful as it was - and it was awful) I wasn't scared. I'm good in a fight. I'm scrappy, and I follow instructions well.  I knew I had a world-class team of physicians, and they were optimistic, so I was optimistic, too.  It was all about getting through the grueling treatment.  Finishing chemo and radiation was the total focus of my world.  Even in the pain, I felt full of gratitude, and grace, and my priorities were instantly aligned for me. I appreciated the small things that usually went overlooked.  This is the gift of cancer.

It wasn't until I was given the "all clear" that I folded up like a lawn chair.

I spent two days crying, almost non-stop. I couldn't function, sleep or eat, I was so paralyzed with fear.  That was four months ago.

The past four months have been their own journey - different from treatment, but scary all the same.  I realized that all of my attention had been focused on the fight. I wasn't thinking about after the fight - I just wanted to get there.  In my mind, if treatment was successful, I'd get to check off the cancer box: did that. DONE.

What I learned is that the end of treatment is the beginning of another journey into my new normal.  I learned I don't ever get to check off the cancer box.  Just like recovery from alcoholism -  I don't ever get to check off that box, either.

The fear that came after treatment was my denial - my fighting the truth of my new normal with every cell in my body.  I didn't want it to be true - a lifetime of wondering if it will come back.

When I stopped struggling against that truth and reached out for help, the fear got better. I joined a cancer support group.  I started therapy with someone who specializes in cancer patients.  And I'm writing about it, here.

Through talking about it with other patients and survivors, I learned that trying to get rid of the fear is impossible. I need to find a way to accept it, lean into it, even.  The more I push it away, the bigger it gets.

I have my first set of scans next week. A whole day of doctor's appointments, check-ups.  I admit that I'm scared, but I'm learning to embrace the fear as normal. I am only human; of course I'm scared sometimes. I'm a cancer survivor.

It's like when I crave a drink. Of course I crave a drink sometimes.  I'm an alcoholic.

Trying to be stoic about it, or a super-hero, gets me nowhere.  I'm told by others that have walked the path before me that I'll get used to my new normal as time goes by.  The appointments will be less scary.  I trust that this is true, because I see the grace and strength in them, and it's something I want for myself.

Just like with early recovery from alcoholism; I trusted the brave women who had walked the path before me. They told me it would get better, and even though it felt like it never, ever would - it did.  I believed because they believed.

I will believe the graceful, brave, amazing cancer patients and survivors - that it will get easier - until I can believe it myself, and I'm getting there.

Day by day.


  1. So much truth here, Ellie, thank you.

    And I'll add this, from several years down the road... someday, you will see this as just part of your life. You will go far beyond surviving. You will thrive. You will live every minute of your beautiful life without folding into fear.

    The fear doesn't leave - you just learn to wave at it and move forward with a whole lot of ease.

    Love to you.

    1. Thank you, Christa. You are one of those brave, graceful women who give me so much hope. You are an inspiration, my friend. -xo

  2. LOVE the image of folding up like a lawn chair. That's just what that feels like - falling apart and feeling useless AFTER the crisis is done, after you've been backed into a corner, fought for your life, and won... only to have that spiritual adrenaline have nowhere to go. Bluhbluhp, plop. Thank God you have people who love you (including Him) who can "open you up" again.

    Fear is normal - the unknown is always scary. It does get more manageable, even if the fear doesn't go away entirely. As one slogan I read once goes, "Do it scared." You've already proven you can. :D

    1. "Do It Scared" -- I LOVE that. Thank you, as always for your wise, comforting words, Judy. -xoxoxo

  3. Love this post and time really, really does help. I dealt with breast cancer about two years ago (dx while my husband was in Iraq, no less). Honestly, I rarely think about it now. I don't stress about it, it's not a part of my life and I've been back to my old normal for some time now. I very much enjoyed your post and will be checking back...

    1. Thanks for your comment, Jen. It gives me so much hope to hear other survivors' stories not just of overcoming the disease itself, but the mental game, too. THANK YOU!



  4. I can remember sitting in the waiting room during treatment and watching people who looked well walk in, I would always think "why are you here?". Now I'm one of "those" people.

  5. I'm so glad you're Okay- keep writing, I beg you.