Thursday, September 1, 2016

A letter to my friends aka "I don't know what to say."

My dear ones,

If you have read these posts from the first one, you are now aware (and probably in shock a bit) that I have shared the news that I have a cancerous brain tumor that is going to clip my life much shorter than I imagined. Being that I am still in shock myself about this news, please know that I write this next part somewhat selfishly (for my own sanity at the moment and hopefully as a means to help you to wrap your head around this news as well). 

1. I am dying (Yes, I know we all are, but it is very likely I will die in the next couple years). 

2. Sharing that news with people I love breaks their hearts too. I really understand that. They have to grieve the awfulness of it as well and go through the stages of grief.

3. You don't know what to say. Perfect. No, really. It is a perfect response. Nothing you can say will fix this, make it better, or heal it.  Please just be present with me. That is all I need. Be my friend. Hug me, kiss me, tell me you will pray for courage for me, tell me that you love me. Let me be sad. I need to be able to be sad right now, for awhile. It's okay for us to just be sad about this together. Let me cry and make totally stupid jokes, and do dumb things like name my tumor 'Cordelia.' It's my way of coping with all of this.    

4. Please stop telling me about your uncle's brother's cousin who had a cancerous brain tumor and lived. Stop telling me about gamma knives, and tumeric, and technological advances in the future. Please trust that I will research everything to a fault, every option possible, and so will my top notch surgeon sister. Please understand that because you Googled that some people live ten years with chordomas (I got about 15 of those stats:) )...that doesn't mean that my situation falls within parameters that allow such a thing to occur.  My tumor is sitting right on top of a major artery- I can't survive chemotherapy or radiation. I hope I will be able to have surgery to extend the years, but it's too soon to know. When the expert (the person who hunts and extracts these vile things for a living) tells me what my options are, and I have a plan, I will share it with you. It is human nature to want to comfort and find solutions for problems. That I understand. But please, wait. 

5. Laugh with me. Laughter is going to be such a key piece in coping with all of this. Help me to make my time left amazing. Do bucket list things with me, simple lovely things like taking a walk or drinking tea with me, sharing a pun on facebook, or a great music video. Tell me about your family, your stories, and your joys and sorrows. It's small things that always delight my days. My treasure has always been and will always be my friendships.

6. Keep in mind that Jesus is my soul's great love. I have been waiting my entire life to be with Him. When the time comes for me to go home, I will be ready to run into His arms. There is no angst for me or doubt about what happens after our Earthly death. Love is eternal. God's ways sometimes seem confusing and unfair, but I have complete faith and trust in Him whom my heart loves.   

7. To heck with my 'Nutella and Strawberries only on my birthday' rule. I am now going to eat it whenever I want to!  :)  

The Beginning of the Twilight

I sat down in the patient chair for the second time in two weeks, legs crossed, nervously kicking my leg rhythmically against the side of his medical desk, pondering which version of myself I was about to present to the man about to walk into the room. "Cerebral and charming," I think to myself. "No emotion. Not one tear. Be funny."  Underneath the drill sargeantesque directives I am mentally giving myself, there is a layer of simultaneous disgust at this planned manipulation. 

It's a natural part of my job as a therapist to read, assess, and connect with people quickly. It's not a skill I intentionally use for personal gain. Except for, well, right now. This time I am going for broke..."I am going to endear myself to you immediately, and stand out to you among the many people who come through your door. You will help me as much as you can."

In walks my neurologist. I smile broadly at him and say, "I missed you too much to wait another month to see you!" He cracks a grin at my joke. Underneath his expression, I see relief. Relief that I am sitting in front of him composed and rational. Relief that he will not have to calm down a hysterical woman. I inquire about his recent adventure, recalling all the details he had shared during our prior appointment, about his cats and their latest antics, about his work load and self care. He's busy telling me several stories-- as I watch him type in various passwords and wait for the screens to load the images we are both there to see. I put on my best studious, scientific, "let's get to the data," face. 

Then, suddenly, there it is.

An image of my brain. 

Then, several. 

I watch his face as he looks over each of the four images. For some reason, the squares remind me of the opening title sequence of 'The Brady Bunch.' I begin to hum the tune to myself while intently observing his microexpressions...the twitches, the brow furrow. I say out loud what I already know, "The preliminary diagnosis from the radiologist is definitely accurate, isn't it?"  

He nods. "Yes."  

"Show it to me."  

He takes a pen and shows me the tumor on each of the slides. He tells me what the parts of the middle of my brain ought to look like and what they actually do look like."  I manage to be mildly offended when he tells me my "pons is flat." Now I am watching myself in a surreal moment. He keeps talking, but it's hazy and I feel far far away.

"Rare...one in a million...only seen one in my career..."  

"Go big or go home, right?"  I laugh. Maybe the fakest laugh I've ever laughed.

"Walk me through my death," I say curtly and matter of factly. Far, far away now. "Explain to me what will happen when it grows." He begins to tell me.  Hazy, hazy...clouds of consciousness.

I watch him officially pull up my diagnosis and enter the ICD 10 code into the computer system, "Malignant neoplasm of bones of skull and face C41.0 Chordoma."

"You just made it real," I say softly. 

 "Yes," he replies.

Then he moves on to discuss surgery, best chance to prolong my life for a couple years...how chemotherapy won't do any good, how radiation would work on some of these types of tumors, but probably not on mine...it will destroy the surrounding brain tissue...your tumor is on the basilar artery...

I start to lose my stamina at keeping up my emotionless face. He moves on to list several neurosurgeons, and starts to discuss their personality attributes and how long he has known each of them.  I cut him off and reach for his hand, making sure he is looking at me, seeing me, "if this were you, who would you pick?"  He gives me the answer...but then goes on to tell me the surgeon will likely refer me out of state.

My last bit of gusto, like a marathoner at mile 26.1...turning on the charm as my soul collapses beneath his tower of words, "Do you think you could call him directly...and tell him about this one in a million cool tumor, and add that the patient isn't a basket case?"  He smiles at me and says, "I'll go call him right now."

Finish line. I can fall down now.

He walks out of the room and in a rather touching unexpected gentile gesture, walks over to pull the chair out for me as I sit down to talk to his assistant.  

My spaghetti legs ferry me down the stretch of muddy hallway carpet toward the elevator..."Thy will be done, Lord. Thy will be done."