CancerLand Bookshelf: Songs from a Lead-Lined Room

Memoirs lined up on the CancerLand Bookshelf are often filled with powerful life lessons, painstakingly learned on the long journey to recovery.

Last week, almost twelve years to the day after my own cancer diagnosis, I faced up to a daunting challenge that helped me finally make peace with my biggest cancer-related loss to date.

My mind.

If I were writing a cancer memoir, I would call this chapter Chemo Brain Meets the Inscrutable Relational Database.

It would go something like this…

That day at work, the software trainer treated me like any other student in the class, and that might have been her first mistake.

Standing in the front of the room next to her LCD projector, the trainer began the demonstration, pointing and clicking her way through one screen after another at a breakneck pace, explaining each field and the type of data to be entered in a dull monotone.

Clearly this was a no-nonsense lady with a mission, and her agenda would be accomplished without fail by the scheduled lunch break.

As she spoke, I sat silently next to my classroom computer, a frozen half-smile and less than authentic expression of interest pasted on my face, and tried to take notes on a yellow lined pad.  Before long, I was totally lost, not even understanding enough to formulate a coherent question.

The more she lectured, the less I seemed to learn.  Minutes ticked by painfully.  My discomfort was moving slowly towards full-blown panic; I felt a throbbing headache start up behind my eyes.  I furtively looked around the classroom to see if my frustration was mirrored on anybody else’s face.  Not so much. And that only made me feel worse.

By lunchtime the other learners had mastered the program and filed out of the training center, leaving me behind – the sole “special needs” student. The “extra help” consisted of the trainer repeating her spiel all over again starting from the opening screen.  This was about as effective as trying to communicate with an ESL student by simply speaking in a louder voice.

In desperation, I asked the trainer if I could share some feedback on how things were going for me.

I need to tell you why I think I am having so much trouble, I began, I am a cancer survivor and my treatment included eight rounds of chemotherapy and eight surgeries with general anesthesia.  My brain just doesn’t work the way it used to.  And being middle aged just makes it worse.  Your teaching style doesn’t match my best learning style.  Honestly, I need some accommodations to learn to use this computer program.

I wish I could tell a story of this software trainer hearing me and adjusting her instructional style accordingly to meet my needs.  I wish I could describe a classroom scene where we switched from lecture to hands-on learning with user-friendly cheat sheets close at hand to guarantee my success. I’d love to write up that AHA! moment – the lightbulb suddenly turning on and then burning brightly over my head.  But that would be a lie.

Cancer teaches that I can’t change what has happened to my body, but I can accept my losses with grace and somehow learn to adapt.

Breast cancer survivor Suzanne Strempek Shea has a few insights of her own about that very notion.  Read on and see if you don’t agree.

Excerpted from: Songs from a Lead-Lined Room by Suzanne Strempek Shea
Boston:  Beacon Press, 2002.

At one point in my travels I meet a woman from France who wants to know about the cancer, and after listening she concludes in her great little accent, “Life must be so beautiful to you now, no?”

I say sort of, and she cocks her head and frowns as she figures out what that means.  I say, it’s kind of like Thanksgiving, which came just after my treatments ended.  So many people told me I was going to have the best holiday ever, so much to be thankful for.  But my head was still spinning…

I muddled through the next few months in what I’ve since learned is called the “now what?” period.  You are done with surgery, treatment, the daily checks by health professionals.  Now what?  Nobody knows.  You are turned out into the big meadow of the world to fend for yourself.  Someone asked me, so what do you do now?  And I said, you just go day to day hoping you don’t get anything again.  They said goodbye shortly after my answer.  Most people don’t want to know what you are really thinking.  They want it to be what I myself would have wanted:  a fast and mindless TV show.  The problem of cancer is introduced in the Movie of the Week, and by the end of the two hours, just before the 11 pm news, there is the happy conclusion.  A life saved in Hollywood fashion after a brave battle by a patient who thought only of others when she was at her worst…

I wasn’t funny, I didn’t try, I didn’t look so fantastic.  I scrambled upstairs when people came by.  Pushed away my husband to the point where he was so small I could hardly see him.  Tried the patience of those who’d known me the longest.  It wasn’t pretty, or telegenic, or what I would have predicted if I’d ever thought of how I’d be as a patient.  But who imagines that picture ahead of time?  There are no books titled, This Is How to Act When You Get Sick, just as there are no books that prepare loved ones for what they’ll be feeling.  No-six-weeks-for-twenty-five dollars courses on the correct steps, timing, rhythm so we can all look good on the big day.  We learn as we go…

I can be harsh with myself, can still go between that and back to feeling sorry for me me me – whoever that “me” is now.  I do feel like a different person.  Some of the pastimes and people that I used to love or enjoy don’t hold meaning for me any longer.  My body has returned, my strength, but something I can’t name is missing.  There is a Native American belief about the soul having to catch up with the body after a long journey is made.  That makes sense to me.  I feel I’m standing at the station looking down the tracks and waiting for the train that is carrying the inside of me.  The engine will pull up in a big cloud of warm steam and the essence of me will jump from the door into my arms and my center and click in like the final puzzle piece you needed out of the thousand in the box.  And I will feel whole.

But, as the wise woman said, I probably should forget about that.  My soul will arrive when it arrives.  Waiting won’t hasten its trip…