La La How The Life Goes On

All That You Don’t Know

Posted on: October 23, 2015

I still have it in a drawer upstairs. The 20 page consent form for my stem cell transplant.  Page after page of the doctors, the drugs, the protocols, the prognosis. All easily summarized in 9 words: “The life-saving treatment proposed herein might kill you.” You hold the pen, biting the cap nervously, entertaining for a moment the notion that you are actually pondering the minutiae of the document. Then you remember that if you don’t sign the document, the disease that is at this moment decimating your bone marrow most definitely WILL kill you, and in short order. There are no odds to be weighed. No pros or cons to be tabulated. You simply must sign or die.

Dying when you have a three year old who already lost her first mother is not an option. Dying when you are 34 years old and have yet to see Las Vegas is not an option. Dying when you are just not ready to stop living is not an option. You sign or die.

So you sign. The kinetic energy in moving the pen across the paper somehow makes you once again entertain the notion that you have options.  You imagine all the books you will read and write during your hospitalization. All the letters you will write to friends. All the profound discoveries you shall make in this healing endeavor. What you can’t know in the relative comfort of the office, holding the pen, hearing the satisfying swish-swish of the consent paper as you pretend to read it, is that you will spend the majority of your next 100 days decreeing a 20 foot walk without collapsing from exhaustion to be a total outright victory. You will write no books. You will read no books. You will simply be glad for every day that you have the energy to open your eyes.

But you don’t know that yet. Right now all you know is what you hope. All you know is what you fear. All you know is the only thing you now control is how much of each you abide. Some days hope will be all you have as you look at photos of your toddler and imagine how her little voice will sound when she is 4, when she is 5, when she is 6, and what music it will be to hear it. Other days the fear will be your guide, forcing you out of bed, past the nurse’s station, to walk those 20 recommended steps. 20 steps to prove to yourself and to your dead father that even if you are ordained to go you will not go quietly.  20 steps to ensure that if you are ordained to go your daughter will know you died on your feet and not on your knees. 20 steps to convince yourself that maybe tomorrow you can do 21.

But you don’t know that yet. You don’t know that you will survive. You don’t know that you will survive 100 days in isolation.  You don’t know that you will survive 365 days indoors.  You don’t know that you will survive the dreaded acute Graft Versus Host Disease (GVHD), a complication clearly outlined on Pages 10-12 of your consent form.  You don’t know that you will live with chronic GVHD (consent form, pp. 12-14) for the rest of your life. You don’t know that the constant immunosuppression required to stop the GVHD from killing you will often come close to killing you. You don’t know that you will often wonder if you didn’t just trade one terrible disease for another.

But you don’t know that yet.  You don’t know that it will take years for your emotions to catch up with your bone marrow. Your body will be healed but your psyche will not. You will intimately understand the mysteries of the amygdala, the powerful pull of subconscious hypervigilance. Your bone marrow will function normally; your innate sense of safety never will again. You will tell yourself that you will never wear sweatpants or bandannas again because you wore them for a year filled with terror. You will tell yourself that you will never wear button-down shirts again because they remind you of the miserable central line that protruded from your chest like an alien. You will tell yourself that you will never have short hair again because cutting it as it falls out in clumps feels like insult added to injury. You will tell yourself that you will never carry a change purse again because as the chemotherapy infusions slither through the IV on their journey to destroy your damaged bone marrow, all you can taste is the nauseating smell of wet pennies.

But you don’t know that yet. All you know is what Emily Dickinson knew; that hope is the thing with feathers.  That the little bird that will carry you through the gale and over the strangest sea today will do so again in the future. It will remind you that just as you spread your wings and leapt into the vast unknown of physical survival, you will someday be required to leap again for your emotional survival. You will need to believe that sweatpants and button down shirts and short haircuts and handfuls of pennies cannot hurt you.  That they do not have the power to summon disease, to injure bone marrow, or take you from your children. They don’t have that, or any, power. The power is, and always has been, yours.

But you don’t know that yet.


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