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Top things to not say to a brain tumor patient...

So over the past few months I have experienced some pretty dismissing comments. I'm actually amazed that people would say these things ...

Wednesday, December 14, 2016

What have I been up to? This...


“WARRIOR”

I have to go. There is no other choice. No way to say no. No denial of what is to come; all that is in doubt is how soon. I have a commander that is one of the best. He is respected and trusted. My team is supportive and always has my back. The commander will guide the mission. I don’t know how long the mission will last but hopes are that it will not be long.

I hope for a short mission. I want to get back, back to my life, my real life; the one with kids and laughter, not grim silence and waiting. I want to get there fast. If I could run out the door and make this mission disappear, I would. Instead, I wait.

Waiting is a tension all its own. Muscles tight, holding in everything I want to say but am afraid to voice. I work to stay upbeat, talk about anything but what is coming. I make plans; plans for next month, next year, anything to avoid thinking of now. My heart is full, brimming over and waiting for the first crack in my armor to appear. I fear what will come pouring out when my armor gives way. No one can hold this pressure. The human heart was made to bear only so much.

In and out, I focus only on breathing.

I hear echoes up and down the hallway outside but no one enters. Rustles outside betray the presence of others, they know what is coming, the mission I am facing. The clothes I wear are not my own. They are scratchy and smell of nothing. That same nothing permeates the room. A room full but filled with emptiness. I wait; it’s all I can do.

I am isolated, alone, sitting here in myself with only memories as companions. I prepare, as much as anyone can for what is to come. The word comes, tomorrow.

Tomorrow, I go to war. What am I leaving behind? What message do I leave for my family, my sons? They make you update your will, just in case, they say. What happens if I don’t make it home? God, I don’t know how to do this. Rest, they want me to rest. I can’t imagine sleeping now. Clothes not my own, bed not my own, I don’t even smell like myself. I have absorbed the nothing of the room. I know that I am as prepared as I can be, but I am not prepared at all.

I wait. A last goodbye and I wait. All is ready. I head out.

Smell. That is the first thing I notice, the smell. Blood, antiseptic cleaner, All I smell is sterility. The odor burns my nose. I want to turn away but am unable to move. Sounds blur into the hum of buzzing bees. A background vibration that is unfamiliar and unrecognizable as sound. The vibration exists at the edges of my consciousness. My eyes, I cannot open them. Lashes flutter in futile effort. A hand grasps mine. Firm and gentle, the touch is familiar.

In and out, I focus only on breathing.

Colors flash behind my eyes as the buzz of bees continues. I find myself surfacing only to swim in a pool of flame. God, the fire burns. Lights flash as red, grey, and white; flares that are overwhelming and deepen my fatigue. I swim in the burning flames and they lick at my nerves. My neck screams, “Make it stop!”All I know is an agony of fire. Burning acid that eats away at my awareness.

Words I can see but cannot say. I open my mouth and no sound comes out. The hand squeezes mine. It grips my wrist, rubbing in circles, soothing and bringing me closer, out of the pain. A buzz. Something tickles my mind through the pain; a brush of butterfly wings. Something I know, but what?

Voice. It’s a voice I hear. A voice I know. What is it? More voices, some I know, some are new. He is here. I grip the hand in my weakened grasp. He is here, that means I made it. Oh God, I made it. He is here, I am not alone.

The hum comes again. Three, three voices. I hear three voices. Words. I hear words. Through the pool of fire, they come.

“I think she’s waking up, Dad.”

A buzz. Nurse? Nurse, that’s the word. I’m in a hospital. O.K. A nurse makes sense.

Fire, God, make it stop. Coming back is swimming through a pool of fire. Flames lick and flash, lashing deeply into my neck. I try to move but my body is bruised and beaten, lying here on the bed. No control, no power, no strength. God, it burns.

“Neck. Hurts.”

“Yes, it will hurt. The surgeon had to cut through some muscles to get to the tumor. Rest.”

“No. Neck. Hurts.” My voice rasps out words as whispers. So much effort to do so little.

“I know.” Pacifying and dismissive the words come. Unheard as the pain flares higher.

I gather strength, strength I do not know I have. “My sterno-ceido-mastoid muscle is on fucking fire. Adjust the goddamn pillow.”

“Oh.” Finally, understanding.

Relief rolls in like a cooling wave of clouds; a fog that blurs the edges of the fire and brings peace. Enfolded, supported, released from the acute pain of burning. At my lips a cup is pressed so gently given as if a first kiss. Water; cool, soothing, sweet slides inside my parched mouth. I soak it in past dry lips. Desert throat; raw, worn, and tasteless. Arid. Barren. Without life. God, I am so tired.

“How do you feel?”

What? Why do you want me to answer questions? Why? No, I just want to sleep. No more fire. No more burning. Awake is pain. So much pain, pressure, fatigue soaked inside every cell. “O.K.”

“Your dad is here. You did great.” Voice steeped in safety and warm with love.

“Hi. What’s going on?” I croak out through my raw throat. I still can’t see.  My eyes are too heavy to open them. Lashes flit and flutter impotently. Nothing aside from a blur of red and white can be seen. I smell blood, lots of blood, my blood. Iodine, chemicals, rubbing alcohol, and bleach; the odors are assaultive. I want to turn away, hide, but I cannot move. Trussed and tucked onto a table, immobile and contained.

“Water.” I take a bigger sip and immediately my body rebels. I throw up and cannot stop. Stomach acid reawakens the fire in my throat. Calls for the nurse are answered immediately in ICU. Pricks of needles, medicine brings relief, but the damage is done. It triggers a coughing fit. Uncontrollable and violent, it has been a day of violence. Each spasm tears through my skull like thunder. The air is forced and ripped from my lungs, already bruised and tortured from surgery. Hands soothe and pat. More medicine is given through IV lines. The attack retreats.

“Surgery was longer than they thought. You were in for five and a half hours. They think they got it all, but it was more than they thought. Dad got here just as you came out. He drove without stopping to get here in time. What do you want me to tell everyone?”

What to tell everyone? I absorbed it, this moment. I made it. I was out. I was in the after. We fought and won. Thank God, we won. I hurt everywhere, but I have a chance, a chance for a life. I made it. I can do this. I did do this. The battle is won but the fight remains; the fight for life, a future, for more than now. Thoughts are fragmented and elusive. This I grasp, every day, every moment is a battle to be fought, a battle to not give up, to not give in to the pain, loss, and sorrow. I breathe, in and out, unable to grasp the bigness of hope.

What to tell everyone? Tell them God is good. Tell them second chances are real. Tell them that pain and grief and sorrow are not the end. Tell them that they can learn to see without sight, that they can learn to hear around deafness. Tell them that I can learn to think beyond my damaged and broken brain. Tell that that hope lives and shines its glory, draping the pain in an iridescence unsurpassed by any temporal beauty. Tell them that hope is everything and that potential is infinite.

We are all warriors in this life. A fight we are ill prepared to handle alone, but then we are not meant to. We are not meant to be alone. We are meant to create connections, relationships, reach outside of ourselves. We are meant to learn that pain is not everything, that it does not win if we don’t let it. There are good days and bad days. There is still pain, more than I ever believed possible. There is still danger and there are daily challenges. What a thrilling adventure life is. I am blessed to be able to live it. What to tell everyone?

“Tell them I am OK, and thank you.”

 

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