Lesson 1: Feel your feelings

My dear children, upon learning that they were not allowed in the chemotherapy clinic, asked me to bring their teddy bear and hedgehog with me for love and comfort, and they have been at my side for every treatment. Now Pink Willy, Hedgie, and I have been through the physical and emotional wringer of 6 months of chemotherapy together, and we have felt some things.  We will indulge in sharing some of these things with you.

Friends, there are a lot of feelings that come with a cancer diagnosis, and it can be overwhelming.  The initial feelings are often of shock, disbelief, and fear.  Arthur Frank said it well in his memoir At the Will of the Body: 

What was it like to be told I had cancer? The future disappeared. Loved ones became faces I would never see again. I felt I was walking through a nightmare that was unreal but utterly real. This could not be happening to me, but it was, and it would continue to happen. My body had become a kind of quicksand, and I was sinking into myself, my disease.

It can take months or years to work through what is happening to your body and to your life story.

Many people can tell you the exact date that they were diagnosed with cancer, and they use that date to mark and celebrate their survival.  I was diagnosed with cancer in July, and that was hard, but the story really took a real turn on August 26, 2016, when the oncologist told me, “There were suspicious lesions on your liver.  We need to confirm with a biopsy, but this has implications for our goals of care.”  Goals of care.  With those three words, my heart sank.  From my work researching medical communication, I knew what they meant—that my cancer was no longer considered curable.  I went home and looked up Stage IV Breast Cancer and Metastatic Breast Cancer and found even more frightening phrases like “palliative care” and “supportive care,” terms that are familiar to me in the context of the medical care for dying.

The things that had previously occupied my mind suddenly took on a hazy, unreal quality as it became clear that the story of my life had taken a turn into cold and uncharted territory.  And the most dominant emotion was fear.  It’s natural to be afraid when you find out you have a serious, gravely serious, illness.  Afraid of what might happen.  Afraid of not knowing when the next bit of bad news will strike or what it will be.  Afraid of seeing my loved ones bear the pain and emotional burden of my illness.  Afraid of losing the life that I have crafted for myself.  Afraid of not having a place in the world now that the story I thought I was living had been put through an imaginary shredder.

The thing is, it’s hard to live in fear.  It immobilizes you and numbs other emotions.  In actuality, I was more afraid of fear than of anything else.  I was afraid that if I let myself be afraid that it would mean that things were really as dire as I thought they were.  And if I was afraid now – when I’m actually quite healthy – then how would I be able to cope if things took a turn for the worse?  Turns out that it takes more effort to push fear away than to feel it.  Facing any of life’s challenges is hard enough without the added shame of harsh judgement on one’s own emotions.  Once I let the fear in, it gave way to the grief that I needed to feel over the loss of my life as I knew it, as well as gratitude for all that I have, particularly for the love that fills my life.

Reading How to Meditate by Pema Chödrön helped a lot.  Many introductions to meditation emphasize the practice of focusing on the breath and letting go of thoughts, but Chödrön’s book is an instruction manual for what to actually do with your mind while you are meditating. She offers a series of exercises, including some that train your mind to experience emotions, even difficult ones:

You need to breathe with the emotion; you don’t breathe it away. If the emotion does dissipate, fine. That’s what just happened—and it does happen. Let it be like that. But the point is to go to our experience rather than to go to our strategies or conceptual ways of exiting. You’re breathing the emotion in, and so you’re being with it. You are it, actually. You could even imagine that you are breathing the emotion in to the heart. Imagine you are breathing it into the heart—the large heart—if that helps you.

… Over time, when we stay with our emotions and breathe with them, the emotions can morph. Here is where we really develop the undersatnding that emotions are just energy; we see that emotions are simply energy that we attach our thoughts and stories to. Anger morphs into sadness, or it morphs into loneliness, or perhaps it even morphs into happiness.  All of this can happen.

There was one fear that I was able to put to rest, and that was the fear of suffering alone.  Being diagnosed with cancer can make you feel like a non-being, cast out of society.  It is as if you have literally failed at life, as the diagnosis says, “Sorry, no life for you!”  I don’t know, maybe it’s due to some kind of primal instinct to withdraw when facing illness, or maybe it’s our late-capitalist society telling us that our worth is contingent upon our promise of productivity.  But so many people responded with love and compassion that reassured me I was very much in their hearts and still worthy of love.  I drew strength from the gifts of kind words, food, books, gifts, errands run, good company, and visits from near and far.

My worst fears have not materialized yet.  I’ve been tired, grumpy, happy, sad, silly, and run down, but I’ve made it through half a year of this cancer meshugaas.  Last week I got the results back from my latest scans.  My cancer has responded as hoped to my drug regimen, with the cancer shrinking to the point of near-invisibility.  Even my experienced physicians cannot feel the tumors when they examine me.  For now, at least, this makes me one the “lucky ones” with an “excellent response” to chemotherapy.  The joy that I feel at being one of the “lucky ones” among metastatic breast cancer patients is tinged with more than a hint of irony and poignancy.

So here I am, 6+ months in, and I can (often) say that I have Metastatic Breast Cancer without shedding even a single tear.  It turns out that the thing to do when your story has been put through the shredder is to start telling your story all over again, even if you’re not a very good storyteller, and even if you’re not sure where it’s going.  I’ve been inspired by others who have told their stories, like here and here.  And now, clumsily, I tell mine.