Friday, October 21, 2016

Use The Good China

Recently, a friend asked me if I had any advice based on my new found time-is-precious-beyond-understanding wisdom born of my current health predicament. Without pausing for much if any thought, I found myself saying, “use the good china.”  There’s absolutely no originality on my part in that comment…I’ve heard and read it several times from others who've had near brushes with mortality. But, it’s an important message that bears repeating.

Stop waiting for the day you are going to have a dinner party sometime in the future, or a big family dinner that comes around twice a year.  Use your good china right now! Use it often! It doesn't decrease the specialness, I promise.  Make yourself a nice meal, put it on your china, take a tray in hand and go read your book, or watch a show (unless you are practicing the art of mindfulness-in which case sit at your table and enjoy the act of eating).

Now a little bit of a tangent...I’m a super weirdo about dinnerware.  You know how most people who need new dinnerware actually go into a store… look at a few patterns, pick one they like, and then go home and use it?  LIKE. A. NORMAL. HUMAN. BEING.

For me it takes on a more significant gravitas…like, “which dinnerware defines me as a person?” (Men, hang with me through this part...I promise there's a golden nugget of wisdom at the end) 

It’s beyond ridiculous ya’ll, but it is what it is.  So, for the last two years (smh that I actually wrote two years and meant it) I have been trying to pick a set of dinnerware. An activity that should take maybe a day at most, has taken me a couple of years. I want to have a set for life, and so it has to be the right one.  Several different boards for dinnerware grace my Pinterest page- one for the Portmeirion (English), one for the Vietri (Italian), one for the Gien France (you guessed it...French), and one for the Polish pottery. My modus operandi has been to pause at each brand, look through the different patterns, while simultaneously trying to imagine myself at the table with family and friends, (using whichever pattern was occupying my thoughts), at the various holidays and get togethers of the year.

One of my goals before having brain surgery has been to pick a dinnerware brand and pattern.  That goal didn’t sound as pathetic in my mind, as it does via keyboard. The good news is…I've done it!

This afternoon, my mother, Gilbert (my trusty sidekick walker) and I drove through the blanketed beauty of the first freshly fallen snow in our town.  I have been singing Dean Martin to myself all morning… “Let it Snow,” and “Walking In A Winter Wonderland.”  It was simple contentment and joyful giddiness at the powdered trees, and precious time spent with my mama.

We meandered into one of our favorite stores and I looked over the vast displays of china and pottery with curious unrest. My eyes paused as they landed on the Portmeirion Botanic Garden pattern that has been my dishware for the last sixteen years. It felt like a sad goodbye, as though I was looking at a different version of myself that didn’t match who I was any longer. 

As years have gone by, I’ve been turning more and more into a homebody hobbit (minus the gross hairy toes). Friends have been encouraging me to get plain white dinnerware. “Classy” they say. “Elegant and versatile.” “You’ll get sick of a pattern.” I stare at the white displayed selections with my face scrunched in disdain at the thought of practical utilitarian rationale. 'White dinnerware definitely *does not* define me as a person,' I ponder seriously to myself (as seriously as one can be about such a subject...anyway). I can’t do it-even if it's logical.  Standing there, leaning on Gilbert, I begin to wonder if other people ever have this kind of stream of consciousness standing in front of displays.

“What do I want?” I chant this mantra over and over to myself.  I want beauty, artisanal work, colorful, tasteful, rustic but elegant, good quality, kind of hobbity… chemistry.  I want chemistry! That's it! But...with my dinnerware? Self, what are you talking about? They are plates. You’re being a little nutso here.  But that was the truth. I wanted dinnerware I found really pleasing because I know enough about myself--- to know that looking at a pretty plate with dinner is enough to make me quite happy most days. That’s why this quest for the right dinnerware was so important. It’s that perfect trifecta of something being beautiful, a hand made piece of art, and serving a utilitarian purpose that brings me such tremendous joy.

You see, when humans are just awful to one another other, and I’ve had to deal with horrid pain and terrifically bad stories in therapy sessions with clients... I can come home, and see beautiful dishware in my cupboard and think, “But look at this! Humanity may be full of flaws and we may do horrible and base things to one another, but we simultaneously have this higher part of our nature that makes winsome artistry like these plates. The right dinnerware is a profound sign of hope for me.  It's taken me a long time to try to explain out loud why I couldn't just grab something attractive and be done with it. This is why. This is the much deeper significance I haven't been able to articulate. As silly as it may sound, this type of beauty helps me to constantly remember what we are positively capable of, and is a source of hopeful edification. Eureka, for being able to finally name it.

All of the sudden, my eyes landed on a stand-alone display.  As in a movie sequence I moved toward it like a moth to a flame (well, rolled and hopped and schlepped along if we want to be technical), and there I stood in front of the Polish pottery display, while a ray of light came down out of the ceiling and heavenly music played while billowy clouds gathered at my feet…

Okay, not quite like that. But in that moment, I knew with perfect clarity that Polish Pottery was my dinnerware destiny. I picked up the heavy pieces and ran my fingers over their smooth surfaces. I imagined the artisans creating the patterns and designs. What were they thinking about as they painted each piece?  Did they ever wonder who their work might go to? Were they heavy in thought over happenings in their own lives as they completed the minutia of the brush strokes? Was it a mindless activity for them? Do they know how much their gifts of artful details matter? Do they take for granted that they can create such beauty so effortlessly? 

Staring at the various patterns, I made a bold decision. 'I’m not going to pick one pattern', I thought. Why limit myself?  I loved the look of all the patterns displayed together. I’m going to get as many patterns as I want and mix and match them at will.

I picked up a plate with a butterfly. ‘Definitely this one,’ I decide. Then I thought the better of it and put it down.  ‘No, you can get the butterfly plate after you get home. After you have the surgery, and after you return to work.’  Give yourself a little goal. Earn your butterfly plate.  So, instead I pick out two luncheon plates to finally start my new dishware collection.

When I get home, I know I’ve made the right decision.  I sit down at my laptop to write my blog, with my dishes in a plastic bag next to me on the couch. I take them out, smiling from ear to ear.  The beautiful designs are not something I could recreate on my best artistic day. My finger traces the names of the artists Edyra K., and Joanna K., on the back of the plates. A little prayer goes through my head and I ask God to bless them, and to, in some small way, let them know their work and gifts are appreciated and cherished here on the other side of the world.

Love, ~Anastasia

Friday, October 7, 2016

The Incredible Hulk Is Uninvited

I've been thinking about him with the frequency one might think about a new crush or infatuation, but not because he's handsome enough to have a starring role on Grey's Anatomy as another McDreamy...Steamy... whatever the catch phrasing is.

He's no actor. He's a real life neurosurgeon. (When I wrote that sentence, my mind jumped to this.)

So many questions come to mind: Does he have a family? Or, is his work pretty much his all consuming passion? Will he be a kind man, or maybe a brain obsessed version of House MD? Does he have a good sense of humor? Why did he pick this field? Does he believe in God? Does he drink coffee? Who is his favorite artist? What does he read in his leisure time? What are his annoying habits? What inspires him? Does he get enough sleep? What kind of music does he listen to?

  Paul Gardner, MD

It feels a little unsettling wanting to know all these personal things about him...this man who is still very much a stranger to me...but will, in a few weeks, be the man who either prolongs my life, or be the last face I see before my death. This man who went to work today on the other side of the country, and probably helped to save the life of someone else like me. This man who talked to my surgeon sister during a doc to doc referral and told her 'he thinks he can get it.'  This man whose confidence lends to the cautious optimism that there might be more time. Many factors are still up in the air, but this man, this surgeon who has operated on over 150 of these rare one in a million chordomas...'thinks he can get it.' Which leads me to my next mind jump, here.

The clinician side of me wants to connect with his humanity and his soul, and not relate to him solely from the perspective of his surgical skill set.  Although, his surgical gifts are amazing to think about really-he has one of the few sets of hands in the world that can masterfully perform this surgery. He helped to develop the surgical approach for this tumor resection. It appears he's even rarer than the uncommon tumors he fights.

I thought it would be awhile until I met him---originally, the plan was to head to Italy for a Thanksgiving vacation with my mother and sister, come back to Alaska, and then travel to Pittsburgh, Pennsylvania for surgery at UPMC Presbyterian in December. 

Unfortunately, frequent seizures have begun, and I've also mastered a fantastic impersonation of the fainting goats I so enjoy watching...whenever I try to bend down to touch my toes.  The most recent seizure I had happened in front of my three year old nephew Jacob last night.  

Jacob has been well trained by his Auntie to handle emergencies. I taught him how to call 911 when he was 2 1/2 and he has his address and parents names memorized to tell a call taker.  We also play a game called, "What would you do if...?" in which I give him various real world scenarios to consider. He has to think about them, and then we talk about how to respond to them...from moose, to falling through the ice, to seeing a wild dog on the road.  This kiddo, this little light of my life, is going to be Alaska ready.

So, during the building of a train station, where the inevitable showdown between Thomas the Train and Diesel 10 was about to take place, Jacob knew what to do when his Aunt started jerking about and not blinking...he went to get Grandpa because he knew it was an emergency.

It was a difficult decision to cancel our trip to Italy, as I'd already put it off for a long time. But...being realistic about the state of things and my health takes precedence at this juncture. Besides, who wants to be with well read charming Gucci clad Italian men speaking in dulcet tones, drinking fine wine and swaying to music in charmingly lit piazzas anyway? (I write that glibly--- we all know I would have really been found sitting in the various Cathedrals praying all day). 

I emailed Dr. Gardner last night and he advised me to get in to see my neurologist and to move the surgery date up. Cordelia's eviction is now scheduled for November 4th, in Pittsburgh, Pennsylvania.  

Thank you for all the prayers and good wishes!
This morning I was able to get in to see both the EEG technician and my neurologist. I have no doubt that it was a gift wrought by prayer of family and friends. My neurologist is a wonderful, witty brainiac with a heart of gold (as long as you aren't a moose or deer).  He told me the EEG was abnormal and we discussed various medications to help to stop the seizures and increase my blood pressure. He gave me a medication called Keppra.  There are three potential side effects that are worrisome- uncontrollable rage, suicidal thoughts, and (I kid you not) "stiff tongue".  An irate suicidal therapist who can't talk, who works with irate and suicidal clients?! I mean, come's a little bit of a funny scenario to imagine. I hope none of those side effects are my plight. The other comical side effect is "paleness." I'm *so* already winning at that one! ;-) On the off chance I do start dropping eff bombs or threatening people with karate chops...please tell me to call my doctor asap. 

Thank you so much for being with me on this journey---my next blog post is all about each of you!

Love, ~Anastasia


Friday, September 9, 2016

My Coworker Girl Squad

Every Tuesday, a licensed supervising clinician comes down to my facility to offer the therapists group supervision. We discuss diagnoses, volley about distinctions between various differential criteria, critique interventions we have implemented, note areas of concern for/with our clients, learn coping skills to manage the pain of carrying some heavy secrets to the grave (such as a client telling you they once committed murder, and being bound to never tell another soul). There are many issues which come up in supervision really...all purposed to better serve those seeking help in our program. 

And...we laugh. A lot. For necessary self care. I'm an absolute sucker for fainting goats and these Baby Goats in the barn. So cute! 

This week, after telling all the gals on my coworker girl squad, I shared the news I had received with our clinical mentor. I watched it travel across his face and sink into his expression. It's become an intimately familiar transformation for me to watch on peoples faces now, basically it equates to "hold on a moment...I'm trying to take in what you've actually said to me, because what you are saying simply can't be right.

After a moment of quietude he asked me, "Where are you with everything?" Trying to channel my best Spock- with detached, logical, and emotionally devoid analysis (yes, I'm noticing a pattern here) I reply, "I am concerned about going to one of two extremes down the road, many months from now. The first is that I will be facilitating a group this Winter, with people who have just tried to take their own lives, and will feel a great deal of anger and rage well up in me. I'm afraid that despite knowing everything I do about depression and suicidality...I will get furious, trying so hard to hold on to what remains of my life, while they are trying so desperately to let go of theirs. 

Alternatively, I'm concerned I may desire to rescue clients, instead of helping them to recognize their own inner resources and teaching them to build upon those strengths. What if I am compelled to convince and plead with them to fight to stay alive...adamantly and forcefully imparting to them how very precious their lives are? 

Those are both realistic scenarios I'll need to be on the watch for. I know they could potentially arise, and hopefully I can avoid either of those extremes by talking everything through with a skilled grief counselor." 

It's already been a very difficult week to be what I am...a mental health therapist for people in life and death crises. Thank goodness for compartmentalization and defense mechanisms. 

That's not what he meant at all though with his inquiry. He meant, "how are you handling the devastating news you have received?" I dodged the gravitas of his question, whilst simultaneously reaching for a sheet to document our supervision. He stared at me in surprise and said, "Anastasia, do you still want to work toward licensure?"

Wait. Back up. WHAT was he saying?! 
My heart thudded to my feet, bouncing off some organs on the way down. It wasn't until that moment that I mentally did the math...three years from, it's not very likely I'm going to be alive long enough to get my professional license! 

Something resembling sorrow or dread welled I mentally flashed to the years it had taken to get my degree, the hundreds of hours spent studying to sit for two mandatory exams...the doctoral work..."  I tried my best to control what was coalescing within, keenly aware that being in a room full of therapists who knew me...meant they would readily see through my pitiable effort at emotional containment. "Yes, I want to get least I want to try."  He gave me a sad empathetic look and moved onto the next topic, sparing me any additional piled on straws that would reduce me to embarrassed tears about this epiphany.

I forced myself to utter the very basic prayer of my soul over and over in my head, as I sat there rocking back and forth in my chair, hugging myself with hands crisscrossed and grasping my upper arms tightly...the prayer I say every day now (every hour on some days) despite the emotional rebellion that likes to creep in, "Thy will be done, Lord."  

Later, one of my coworkers and I were sitting in the office typing up treatment plans, listening to her music. This song came on, by The Band Perry. She went to skip past it, but I told her to play it...and we sang, and worked, and sang some more. I listen to it often, as well this one. My emotions are so congested, music seems to be the only way I can feel anything sort of purely right now. I imagine it will take a couple more weeks for  everything to really sink in, for the denial to truly subside and wear off completely.

The women I work with are my sisters. They have brought me chocolate cupcakes, candies, flowers, they have cried with me, and they have prayed with me. They have given me real hugs and held onto me tighter when I try to pull quickly away, scared by the vulnerability of an embrace combined with the uncertainty of my ability to "keep it together." I know that's a ridiculous self imposed mandate. No one expects that I have to keep it all together right now. But I am not sure how else to be and function at the moment. 

People can only take so much sadness, myself included. I think I just need to be quiet with my love now, in prayer, to figure out how to move through all of this. He understands it all. He has all the wisdom to teach me.

This will be the last blog I write about the very sorrowful aspects of this least up to when it's time to face new challenges much farther down the line. 

Until then, I have a lot of living left to do. I'll be telling you about those adventures and sweetly savored experiences from here on out.    

Thursday, September 8, 2016

Going On A Bear Hunt

I went over to my sister's house.  My two year old niece Julia brought me a book to read to her and to her three year old brother Jacob. What a prophetic little selection. What a beautiful day...we've got to go through it...

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. It is very likely I will die in the next couple years. 

2. Sharing that with people I love breaks their hearts too. I really understand that. They have to grieve the awful news 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 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!  :)  

God's little license plate messages

At the hospital yesterday...

St.Thérèse of Lisieux

The simplicity of her wisdom never disappoints me. 

Meet Cordelia

Last week I told one of my best friends, Katy, about my tumor. Thinking I was very witty, I mentioned, "I named it Arnold Schwarzenegger. You know like from Kindergarten Cop? It's not a tu-mah."

This is where I paused waiting for her to laugh, and where she in fact did the opposite.  "No," she said emphatically. "You don't get to name it a strong name!  You need to name it a weak and wimpy name."  

She had a point.  "Okay, I'll name it Wimpy."  Wimpy was a good name, until I found out that Wimpy was going to win in the end. Who wants to lose to an entity named Wimpy?!

As I stared at it on the screen, and rolled the name over and over in my head, "chordoma, chordoma...effing brain cancer." I decided to name the tumor Cordelia, and call it Cordie for short. 

From whenst this idea cometh, I do not know. Perhaps, it's an overdose of Anne of Green Gables, as it certainly wasn't the Shakespearean influence of King Lear's poor daughter. Though good Sir William's sonnets have been a sweet companion this week...

Betrayed by my own poor body. That's the terrible awful reality of cancer though isn't it? You wage the battle of Caesar and Brutus within yourself.  Et tu, Cordie?

Oh Cordie, thou art a villian! 

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.

" 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 chemotherapy won't do any good, how radiation would work on some of these types of tumors, but probably not on 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."