All That You Don’t Know

You still have it in a drawer upstairs. The 20 page consent form for your 2007 stem cell transplant. Page after page of the doctors, the drugs, the protocols, the prognosis. All easily paraphrased in 9 words: “The life-saving treatment proposed herein might kill you.” You hold the pen, gnawing the cap, 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 assuredly will kill you. 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 have a sweet husband you’d like to witness go grey and wrinkly is not an option. Dying when you are 34 years old and have yet to see Las Vegas and Helsinki and Marrakesh 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 of the pen moving across the paper reassures you of all the profound discoveries you will make in this arduous endeavor. All the books you will read. All the letters you will write to friends. All the wisdom you will gain. What you can’t know in the comfortable discomfort of the office, guiding the pen, hearing the swish-swish of the consent paper as you flip the pages after pretending to read them, is that you will read no books. You will write no letters. 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 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 that 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 will survive 342 days in isolation. You will survive the dreaded acute Graft Versus Host Disease (GVHD), a complication clearly outlined on Pages 10–12 of your consent form. You will live with chronic GVHD (consent form, pp. 12–14) for the rest of your life. You will confront the daily reality that the constant immunosuppression required to stop the GVHD from killing you will often itself threaten to kill you. 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. Your bone marrow will function normally; your innate sense of safety never will again. You will coexist with the hypervigilant phantasm in your subconscious. You will tell yourself that you will never wear sweatpants or bandannas again because you wore them for a year filled with bald-headed terror. You will tell yourself that you will never wear button-down shirts again because they remind you of the sinewy central line that protruded from your chest and through the buttonholes 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 touch coins again because as the chemotherapy infusion slithers through the IV on its journey to destroy your damaged bone marrow, it leaves you with the metallic taste of 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 it again tomorrow. It will remind you that just as you once 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 have no power to summon disease, to injure bone marrow, or to 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.