Thursday, January 2, 2014

In 5 Years Time

If you have seen the movie, The Truman Show and can recall its ending, you might be able to savor my state of mind mid 2011. After my last dose of methotrexate and bilateral hip replacements I bumped into the seeming end of my cancer experience and discovered a door leading to what? I didn’t know and barely dared to imagine. 

Traditionally, (cinematically, literally, theatrically), the cancer patient story, much like the Cinderella story, has but one ending. For the latter it is "happily ever after. The end." For the former it is, "and she died bravely and gracefully surrounded by her loved ones who will carry on without her. The end."  But what about the cancer patient who doesn’t die, who breaks with tradition? Where does her story go when cancer doesn't end in death? 

During treatment I searched high and low for the survivors of adult onset Acute Lymphoblastic Leukemia, they were not easy to find, not readily discoverable. Unlike Breast Cancer survivors my leukemia chemical brothers and sisters were either nonexistent or clandestine.  3 years out of my trial I can tell you where they've gone. They exist in the silent awe summed up thus: My God, I can't believe I am still here. 

We grocery shop, looking over our shoulders. Remembering the stares and the fearfulness our skeletal bodies, moon-faces, masked and bald-headed cancer patient selves inspired we want to be sure that no, no one notices us. No one can tell where we've been, what we've endured. We fold laundry, or scrub a toilet and remember how impossible these mundane tasks would have been not so long ago. We wake up, blink once or twice and wonder, cautiously and ask, can it be true that I have survived it after all? Then toss salt over the shoulder and spit for good measure. Humbled and quiet, we don't advertise our whereabouts lest the eyes of fate or the play of lila fall on us again and take us for another spin. We get on with life knowing that time's too short to relive the hard parts. 

But oh. Oh how during my trial I wanted proof of an actual human being living life after cancer treatment, free from pills and doctor visits, and tests. I wanted someone not slightly further down the trail but rather on the other far side of the mountain. A guide who never came my way. The Dana-Farber treatment protocol was too new and me and my fellows, even the doctors and nurses were left to find our own way. I owe a debt to my chemical brother Mr. Gardner who, although only a few months ahead of me, stopped what he was doing, forgot his own struggle, and took a few panicked phone calls one July.

For a while, after I finished, the hospital would call me to inspire and cheer up the incoming freshmen. I met several brave souls and guided and consoled and commiserated as I could. But the further I moved from treatment the more hollow my advice sounded. Sometimes it was because every treatment is unique to the patient. Sometimes it was because we were on radically different tracks. Mostly because I realized that even though I was living I could offer no guarantee. And also because as the days went by I began to forget the details. Increasingly it becomes: It is as if it never happened to me. 

Were it not for the scars: Three holes in my arms and one in my chest where PICC lines and a central tri-catheter once received poison and electrolytes and saline and platelets and gave and received blood. A caterpillar like scar on my chest from a failed port-o-cath, and a deep circular mark at my right collar bone where the central catheter had been eased down into my heart via the Superior Vena Cava and also exited out of my chest and attach to the port. Two oval shaped burn scars from an unfortunate incident between my ego and a kettle of boiling water. Two shiny new hips belonging to one Dr. Momberger and racing stripes across my hip creases. My right shoulder remains collapsed, necrotic, and malformed. Not weight bearing I am compelled to live with the deformity and dull pain and forego surgery until absolutely unavoidable. I can still use it after all. That leaves a couple compression fractures in my spine that irritate from time to time. I am profoundly aware that my body is not what it was. My days of yogic contortions are behind me. My stamina is diminished. My vanity stings.

These days all the daily habits of normal living traverse well worn grooves and dominate my mindscape. The specific events between November 2008 and June 2011 have been filed under “exceptionally difficult and unfamiliar events best forgotten.” And so I, the human being well on the other far side of the mountain, am not a very useful guide to those on the outset. After watching many like me pass away, I realize that I represent an idea, a possibility, but not a guarantee. 

I continue to practice the lessons learned from those years of pain, uncertainty, and powerlessness, and have curbed the tendencies that caused me to explode in 2008. I am happy to report that I am not living 3 lives concurrently, just one. And even though I always want to say yes, no matter the load on my calendar, from time to time I manage to say the holiest, sincerest, gentlest no. I remain mindful of grief, and do not allow it to consume me. I eat.

Today marks 5 years of remission. In cancer folklore this means I am cured. So, now, can I describe the life of the cancer patient who didn’t die? On the outside it looks a lot like any other person’s life. Who knows what history or loss any given person is carrying around, right? On the inside it is humility, gratitude, forgiveness, and grace and all the petty stuff that comes with being a human, and alive.

And every day I say, My God, I can’t believe I’m still here.


R Sterling said...

I love you so and your courage inspired me often in my journey.

Heidi Novak said...

Thank you for sharing your truth Brandi! You convey your message so well. Thank you for sharing.
I love you Brandi

Kim Chase said...

You are my Little Sister (.) that I Love (.)

Amy Putney Conn said...

Happy anniversary