Behind the Veil

I'm sitting on the crinkly paper in an exam room at the Cancer Center, wearing the ubiquitous polka-dotted cloth johnny, waiting for what feels like the millionth doctor consultation. 

I can feel myself slipping into self pity.  I don't want to be here.  Not at all.  I used to drive by this shiny new facility, only about 20 minutes from my house, and avert my eyes.  I hope I never have to go there, I'd think. 

Now here I am.

I feel as though I've slipped into a parallel universe, behind a veil that others don't see.  The cancer veil.  It's another world behind here, one where the petty concerns of my previous life seem very small indeed.  I watch the world rush by on the other side of the veil, a world where people's minds are full of everyday concerns like holiday shopping, meetings, work, errands. 

I watch them, and I miss belonging there. Now that I've stepped behind the veil, I don't know that I'll ever inhabit that world of industrious obliviousness ever again.

The doctor pokes his head in, saying "Knock Knock", like they all do.  He smiles, introduces himself, and does a quick examination.   He tells me to get dressed and calls my husband in for a consultation.  He is the medical oncologist; the expert on chemotherapy and radiation, and he will tell us what the next three months of our lives are going to be like.

Keeping a practiced smile on his face, he talks about seven weeks of daily radiation, three doses of chemotherapy, interspersed at weeks one, four and seven.   You will lose your hair, he says, slipping this tidbit in amongst the medical stuff.  And you will need a feeding tube.

My stomach drops into my feet.  Feeding tube?  I knew I might lose my hair, but definitely? 

Despair rolls over me like a fog.  I can see Steve and the doctor chatting there on the other side of the veil, and I'm grateful he is here, because I'm speechless, lost.  I hear the doctor say they will put the feeding tube in - a standard procedure, nothing to be concerned about, just a tube that will be inserted directly into your stomach near your belly button - before the chemo and radiation will even start, because once they start my throat will be too ravaged to eat or drink.

I'm sinking lower, fighting back tears.  I grope for gratitude, and I can't find it anywhere.  I love my hair, I think.  I love food.  I don't want to do this. 

~~~~~

But of course I will.  And I won't do it alone. 

Here behind the veil there is an army.  I sit in waiting rooms and I glance at my fellow soldiers, some with hair, some without, some wearing bandages or looking weak and pale, but all with a look of determination and courage.  They are bruised and battered, but not broken.  They fight with all they have, and I will too.

There are incredible nurses with just the right combination of cheer and realism, who possess a compassion and humanity that boggles my mind. They are the generals who lead our army bravely into battle.

There are doctors who perform miracles with their hands and their smarts every day.  They are the Chief Executives, the strategists, the ones who refuse to be beaten by this disease.

There are the survivors - there are oh so many survivors - who share their stories of fear, pain, hope and triumph. 

You do not meet people like these - the patients, nurses, doctors and survivors - very often on the other side of the veil.  Together we do what none of us can do alone.

~~~

We drive home in a stunned silence.  My mind is flip flopping between sadness and fear.  I have three more scans to endure in the next week - a CT Scan, and MRI and a PET Scan - to complete the "staging process" - a fancy way of saying they will tell me if there is cancer anywhere else.

I push away the fear and search for things to be grateful for, making a mental list:  I live close to world class care, I have an incredible support system, it appears my cancer is treatable.   This helps a little, but I feel the weight of the veil pressing on me, making it hard to breathe.  

Stop fighting and surrender, I think. What happens is not up to you.  I close my eyes and think of the army, of the hope and courage they carry in their hearts, and I let go.

Thankful

Steve and I have been waiting a while in the exam room, shifting uncomfortably and keeping our chatter to lighthearted topics.

We're waiting for one of the country's best head and neck surgeons, with a specialty in oncology, to come give us his opinion about my treatment plan. 

Finally, he steps into the room, and I'm immediately comforted by his open, warm and confident manner. 

He introduces himself, gives his credentials and a warm hello, and rolls a stool up next to the big, blue examination chair I've been sitting in, getting increasingly nervous, for over twenty minutes.  He has seen all my files, reviewed my CT Scan and the case notes, and I'm bracing myself for what he has to say.

He surprises me by placing one hand on each of my shoulders and saying, "Ellie, please look at me."  

I'm startled, but I stare into his eyes; his face is mere inches from mine.

"A lot of what we are going to talk about today will be frightening and unfamiliar, so I want you to really focus on what I'm going to say next.   Are you with me?"

I nod, unable to speak.

"Ellie, this is treatable.  It will be hard - really hard - and this holiday season will probably be the toughest of your life.  But you will have many, many more holiday seasons to come.  You are going to be okay."

Tears spring to my eyes, and I manage to stutter out, "Thank you.  Thank you so much."   

He goes on to talk - true to his word - about frightening things.  My treatment will involve more surgery, chemotherapy and radiation.  For weeks.   But ringing through my head is one sentence, and I cling to it like a life raft:  I am going to be okay.

This Thanksgiving I have so many reasons to be thankful.  We're facing a long hard road, for sure, but I am surrounded by loving family and friends and I feel confident, hopeful and strong.  

Happy Thanksgiving, everyone, from our family to yours.

Cancer Monkey

I slowly come awake, feel the sun on my face, hear the scampering of little feet downstairs, and all feels normal in my world, until it hits me:  I have cancer.

I'm getting used to the idea of cancer, to the diagnosis and all the new fears and questions it brings.  I roll the words around in my head experimentally:  I have cancer. I am a person who has cancer. I am fighting cancer.

After living my entire life - quite literally - in fear of a cancer diagnosis, I'm a little surprised at my reaction.

The earliest memory I have of being scared of cancer is when I was twelve years old, and convinced myself that the stomach pains I had been having meant I had stomach or pancreatic cancer.  I spent two weeks living in utter fear, my arm clasped across my mid-section, convinced the end was near.

Those who know me the best have heard me confess my private fear of cancer over the years. It became something of a joke, really.  "Stay away from Dr. Google," my friends would warn if I complained of a headache or other ailment.  "You don't need any encouragement to worry too much."

Now it's here - a cancer diagnosis - and I'm strangely peaceful.  There are a lot of reasons to be hopeful, which helps. I will know more in the coming days, after consults with oncologists and more tests, but early signs indicate that my prognosis is good.  

I go about my day, help with homework, read to the kids, make jewelry, take naps.  Every now and then the knowledge that I have cancer will jump into my head, like a dirty little unwanted monkey dropping out of the sky into my arms.  The monkey will hang on me for a while, drape itself across my back or cling to my arms, making me feel sluggish and slow.  Finn will ask me to play a game with him, and I can feel myself mentally shifting my monkey from arm to arm, trying to summon the energy to act as if nothing is wrong, that there is no monkey there, that Momma is fine. 

The monkey gets in the way of loving my kids, of being fully present for them.  The times I am the most frightened are when I tumble into their eyes and think:  no, no.  I need to be here.  For a long time.  I feel myself pull back from them:  don't love me too much, kids. I have cancer.

But I know that's just the monkey, whispering in my ear, trying to get me to succumb to fear.

I will not.

I put the monkey down, because I need those arms to wrap around my children, to play games, read books, to laugh and love in the moments that are right in front of me.

The cancer diagnosis has honed my world to a fine point, but to my surprise it's not all about fear.  Not even close.  The useless, petty concerns of life drop away in an instant, and a deep appreciation for what really matters becomes crystal clear.

As we were drifting off to sleep last night, my husband mumbled in my ear: "It's Thanksgiving week. What are you thankful for?"

I thought a moment, and then whispered, "Everything."   And I am, really and truly, thankful for all I have, for all the amazing people in my life, for my incredible little family. 

I never, ever thought I could get a cancer diagnosis and feel so damn grateful.  And lucky. 

I have my moments when the monkey takes over, when I lose myself to sadness and fear. I crumple to the floor in tears, thinking about how unfair it feels.  I have thoughts of 'why me?' and 'why now?'   I let them come, pour out of me in cleansing sobs.

The reality is:  Why not me?  Why not now?  It's my turn, and I'm ready.

~~~~

This post is part of Heather of the Extraordinary Ordinary's link-up, Just Write.  To join in, click here:

The Big Scary

When the phone call finally came, the one we've been waiting three agonizing days for, the one with the results of the further testing on my lymph node and tonsil, I wanted to run away. 

My husband answered the phone in the next room, and I could tell by his tone that it was the doctor.  Reality tilted dramatically, threatening to slide me off the edge and into the abyss.

"Hon, you need to come here and pick up the phone," he said, carefully.  My Mom and Greta were playing a board game in the kitchen.  We've been using a lot of careful tones around the kids these days.

I don't want to, I don't want to, I don't want to, I repeated childishly to myself, as I robotically put one foot in front of the other, until the phone was in my hand.

My husband's face said it all, so as I slowly lifted the receiver to my ear I wasn't surprised to hear   "...cancer.. further testing... hopefully isolated...need to get you an oncologist quickly... come to my office Monday"

I started to shake, ever so slightly, and felt a well of panic rise up in my chest.  The doctor was still talking "....prognosis likely good.... maybe radiation or chemotherapy..... next steps will be up to the oncologist"   I nodded my head, as if he could see me.  As if I could even begin to absorb these terribly unfamiliar words poking their way into my life.

I set the phone down, slowly made my way upstairs to the bedroom, and perched stiffly on the edge of my bed.  I was waiting for the panic bubble to burst, for a tidal wave of emotion to rip me apart.  

Instead, I saw color.  Beautiful explosions of color as the late afternoon sun streamed through our windows and illuminated the blanket on our bed.  I ran my hands across our comforter; it's so soft, I thought.  I heard Greta's laughter as she played with my Mom, heard my dog's contented sigh as she stretched her head into a patch of sunlight.

Time slowed to a crawl; a second seemed to take a minute.  I had all the time in the world to take it all in.

So this is what it's like, I thought, to actually be in a moment.  Just one moment.  It's beautiful.

I don't know what this next chapter of my life will be like.  I'm sure it will be scary and sad, at times.  I've been living so long in fear of this exact thing happening to me that I'm expecting scary and sad.   Now that it's here, though, I can see the beauty and simplicity found in fear, too.  And freedom.  The scary thing is here and I see beauty all around me. I feel hopeful.  I'm really, really scared, but that's not the whole picture.  

Perhaps I'm meant to go through this, because it will set me free from a lifetime of fear.  But, like with all obstacles in life, in order to be set free, I have to get through to the other side, first.

And I'm going to need a lot of help. Physical, mental and spiritual help.  I have to surrender to cancer like I did to alcoholism; it's bigger than me, and I can't do it alone. 

I am praying to stay grateful for the beauty tucked away in the in-between spaces, the tiny moments that sparkle and shine even in the face of fear. 

I am praying to maintain a sense of wonder and awe, instead of fear, of modern medicine and technology.

I am praying that I will be able to get out of my own way, keep my heart and mind open to the things I'm meant to learn, the ways I'm meant to grow, the people I'm  meant to meet.  Every time I go through something difficult - and this ranks up there as one of the hardest - I am introduced to incredible people filled with spirit and hope.  Or I find out that someone I've known all along is full of spirit and hope and I just never knew it until I needed his/her help.  That is already happening.

If I can keep faith and not lose myself to fear, I know I will grow in ways I can't possibly imagine.

But right now, as I start out on this next journey, I'm mostly scared, and pulling my family and friends in tight around me.

Your prayers and thoughts are needed, and received with a very grateful heart. 

Moment By Moment

I'm having my tonsils out tomorrow.

After a series of tests on the swollen lymph node in my neck, with a diagnosis of 'abnormal cells' in both my left tonsil and in the lymph node, my doctor decided to take my tonsils out.  This will allow him to do more tests on the tissue, to hopefully determine what is going on.

The surgery is outpatient, and if all goes well I will be home tomorrow evening.  I'm told to expect a recuperation period of one to two weeks.

As I've written about recently, this all hits on ground zero of my lifelong fear of doctors, health problems, and surgery (which I've never even had before, I've just always been afraid of it). I've been dealing with this for  more than a month now, and although I'm scared about tomorrow, I'm ready.

I spent today getting everything organized: all the laundry is clean, folded and put away.  The fridge is stocked with a week's worth of food.  I've lined up help for the kids - play dates and rides to their activities for a full week.  The house is sparkling clean.   Keeping busy is good; it helps me keep my mind in the moment.

I've spent a lot of time praying, trying to keep my heart and mind open, to hear and feel the messages this challenge is meant to teach me.  All my life I've suffered with this irrational fear, and pushing through this is stretching me in uncomfortable ways.  Practicing acceptance and living in the moment is so much easier when life is sailing along predictably.  The past month has forced me to sit with fear, to find gratitude in the smallest things, to pull my mind into the present moment when it threatens to spin into that place of awfulizing, of certainty that the worst will happen.

As difficult as it has been, I can feel myself growing.  I understand more now about how powerful the desire to control the uncontrollable really is, how my mind likes to travel down the familiar ruts of anxiety and fear.  I'm digging new paths, and it's hard.  It's worth it, though, and I believe that I'll emerge on the other side of this tough patch having learned important things about myself, my faith, my ability to let go, to trust and to ask for help.

I'm noticing the small everyday gifts life gives, feeling my heart swell with joy over the simplest things.  I'm hugging my kids a little tighter.  I'm embracing the love and support from my family and friends with overwhelming gratitude.  I am blessed in so many ways.

I am doing my best to stay in the moment.  When my mind drifts towards fear, towards worry about the test results, towards pain, suffering and uncertainty, I throw up my hands and surrender.  What happens next is not up to me.  All anxiety and fear do is pollute the moments I have right here, right now. 

Thank you to everyone who has reached out to me, offered words of comfort, support and prayer.  I appreciate it more than words can say.

I'm off to wallow in my family.  Moment by moment.

Safe and Warm

I pad through the house, shutting off lights one by one. My head is heavy with thoughts.

Peeking into the kids' room, always my last stop before bed, I find my daughter lying awake, looking at the ceiling.

Tiptoeing up to the side of her bed, I lean down and whisper, "Can't sleep?"

Wide-eyed, she looks up at me. "My brain won't stop thinking, Momma," she says.

Sitting on the side of her bed, I stroke her hair.

"My project is due in nine days," she says, her lip quivering, "and I have a spelling test tomorrow.  Now it's late and I'm worried I won't ever fall asleep."

"My brain does this too," I whisper. 

I stroke her hair a while longer, and she closes her eyes.   "Think about right now, this very moment," I say. "You are safe and warm in your bed, the world is sleeping. Listen to the sound of your breaths.  Don't think about tomorrow; clear your mind."

"Say it over and over to yourself: safe and warm. I am safe and warm."

"Safe and warm," she murmurs.  "Safe and warm."  She reaches out and clutches my arm.  "Stay for a bit, Momma, please?"

I stay, whispering into her ear: You are safe. You are safe." 

Gradually, her grip on my arm relaxes, and her breathing slows to a steady rhythm.  She is asleep.

~~~~~

Later, my eyes fly open.  Outside the wind is howling, and I pull the covers up to my chin.   The middle-of-the-night thoughts scratch at the door; adult sized worries thumping to get in.  My world feels precariously perched, spinning like a top.  So much is unknown these days - test after test to try and diagnose the lump in my neck. An operation to remove my tonsils in six days.  Phrases like 'abnormal cells' ping through my brain. A cold finger of fear runs down my spine. 

I close my eyes and reach under the blanket, find my husband's strong warm body, and wrap my trembling fingers around his forearm.  I can feel the steady pulse of his heartbeat, hear the soothing sounds of his sleeping breaths. 

Safe and warm, I think.  Right now, in this moment, I'm safe and warm.  

Tomorrow's worries fade with each thump of his heartbeat. 

Slowly, slowly, I fall asleep, safe and warm in my bed.

~~~~~~

This post is part of Just Write, Heather of the Extraordinary Ordinary's link-up where we, well, just write.  Come join us, by clicking here.

Endings and Beginnings

I love words.

For me they are little doors; behind each one lies a precious truth, or perhaps a secret. Words give us a glimpse into the soul.

Words are powerful.  

We can use them as weapons of hate, to fuel jealousy, deceit, fear or resentment.  One simple word spoken or written in anger can have devastating effects.

Words can also be healing; a salve to ease pain, fear, isolation or torment.  Words bring community, support and comfort.

I feel like I have lost my way with words. 

I am not going to write about my recovery on this blog anymore.  Somewhere along the way, my awareness of audience led me astray.  I lost the ability to write purely, experientially, authentically, because my ego got caught up in delivering a specific message of hope or inspiration.

I lost sight of what was really going on, deep inside of me.

This is dangerous, because it pulls me away from the private, anonymous, soulful work I need to do on myself. I was looking outwards - at the impact my words have on the world - instead of inward, into my soul.  I lost access to my truth.

I stopped writing for writing's sake, and began delivering a message instead.  The urge to post about pain or difficulty with a hopeful flourish was irresistible.  I believed in the hopeful flourish, in the message, and I was always truthful on this blog, but I found out - in the hardest way - that the danger lies in the things I wasn't saying, the truths I wasn't even allowing myself access to. 

Because of this I stopped knowing how to ask for help; I put myself in a position of having my own answers. I substituted this blog for the hard face to face work of recovery, which is done in the grittiness of a circle of strangers at a meeting, or intimately, and privately, with trusted friends.  This work is not meant to be shared publicly because it is impossible, I have learned, for my ego not to be aware of how it will be received.

I still believe - very strongly - in the power of voice and healing in addiction and recovery.  I don't regret the words I have written here.  I believe that addiction thrives in silence, and Crying Out Now - where hundreds of women come share their stories- will continue to break down those walls of silence, stigma and isolation.  The women speaking out are brave, and the community forming there brings compassion and healing.

I don't want to stop writing.  I want to get back to the place where writing enables me to metabolize life in a pure way.  In an observational way.  I don't want to be a message deliverer anymore.  I can't.

Life has thrown me some curve balls lately.  I have some large obstacles to climb mentally, spiritually and physically (health wise).  I am going to need words, writing, to maintain curiosity, hopefulness, and gratitude, and I am going to need the comfort of the community sharing my words brings.  I will also need words to have direct access to my fear, pain and uncertainty.  Not in the context of recovery - mine or anyone else's - but purely and simply just as they are. 

I have been thinking a lot about whether to shut down this blog or not.  I talked to many trusted friends, and received lots of advice.  I prayed over it.  A lot. I'm struggling with the role of Ego in blogging.  It is impossible to divorce Ego from any form of writing, but in the blogging world the instant response received - and the desire to be heard - is addictive, and it can be dangerous. 

I have been thinking about great writers and speakers, like the Dalai Lama, who share their words, emotions and beliefs with the world without being swallowed whole by Ego.  Last night I watched a teaching by the Dalai Lama, and I was amazed at the power of his words, at the healing comfort they brought.  He spoke about Ego, how Ego as better-than, Ego that is used for power or grandstanding, is dangerous and toxic.

But he also said that Ego is necessary to build self-awareness, confidence, self-love and compassion.  In this way Ego is important, he explained, because if we can't have compassion for ourselves, we have no hope of having compassion for others.  Ego, he said, must always, always, be balanced by humility and a genuine love for all beings.

I fell asleep last night with his words ringing in my head, and I had a dream.  In the dream I was at a spiritual retreat, in a open pavilion with swaying palm trees, the sound of ocean surf nearby, surrounded by colorfully dressed women from all over the world.  They were laughing, sharing stories, lifting each other up with words.

One woman glanced my way, saw me cowering in the corner, silent and alone.  She threw open her arms and flashed me a brilliant smile.  "Come," she said.  "Let me hear your story." 

"I'm afraid," I said. 

"If you are afraid then you are not speaking from here," she said, pointing a slim finger at my heart.  "If you speak from the heart there is no reason to be afraid.  But you must get this out of the way," she said, pointing to my mind. 

"My child," she whispered, placing her hands on either side of my face, "words are a gift.  We heal with words.  We sing with words.  We praise God with words.  What is life but a wonderful story?"

Taking A Break

Things lately have been really tough, in ways that I'm not ready to talk about here, yet.

I'm pulling back, taking a break.  Right now my focus needs to be on my family and my recovery. 

I'm still in the throes of crippling anxiety, and it has put my recovery in jeopardy.  I'm getting medical help for the anxiety, but it's a slow process, and I hope to have some answers soon. 

In the meantime, I need to focus on my recovery in a non-public way.  Sometimes it helps to talk things out here, but sometimes it becomes too draining for me, and it makes me lose focus on the really important things in my life, or distracts me from doing the hard work I need to be doing on myself.

I still don't have all the answers to the medical problems I have been talking about; I hope to have some soon.  I'm surrounded by loving family and friends.  I'm in good, capable hands.

I'm not shutting the blog down, but I'm going to step away for a while.  I will focus my online energies on Crying Out Now, so if you're here to read or learn more about addiction and recovery, I strongly encourage you to head over there read those brave, inspiring words. 

I'll be back; I just don't know when. 

I treasure all of you and your words of encouragement and support you've given me over this difficult time, so thank you - from the bottom of my heart.

-Ellie