What You DON'T Know about HPV and Oral Cancer Could Put Your Child At Risk

When I was first diagnosed with tonsil cancer, I presumed it was because of my history of drinking.

I was wrong.

My tonsil cancer is a result of the Human Papillomavirus, commonly known as HPV.

What I have learned about HPV and oral cancer in the past six weeks is frightening.  If you are a parent of a child between the ages of 9 and 12, or if you will ever be a parent of a child between the ages of 9 and 12, PLEASE read on.

I had heard of HPV before; I knew it was linked to nearly all cases of cervical cancer in women.  I knew a vaccine existed (Gardasil is the one I had heard of) but that there was some controversy surrounding the recommendation to vaccinate girls as young as 9, because it is considered a sexually transmitted disease.

I filed all this information away in my head, and resolved to talk to Greta's pediatrician about it when she got a little older.  Until my own recent experience, I never would have known that HPV is an issue that effects Finn, too.

Here is what I didn't know: HPV is behind what doctors are calling a "growing epidemic" of oral cancers in young adults - people as young as their 30s and 40s (typically, "lifestyle" induced cancer - oral cancer caused by excessive alcohol or tobacco use - doesn't present until people are in their 50s or 60s).  A doctor at Dana Farber in Boston was quoted recently as saying that he is seeing "at least 2 or 3 new cases of HPV+ oral cancers a week."

BOTH men and women (although men make up the majority of the HPV+ oral cancers) are at risk for HPV+ oral cancers, which means that BOTH boys and girls should be vaccinated, and doctors are recommending this as early as age nine, as oral HPV is easily transmitted - from skin to skin contact.  It is said that it will become known as "the kissing disease".

The statistics surrounding HPV are staggering.  As many as 24 million Americans are actively infected with HPV at any given time, with an additional 6 million new infections per year. The virus is typically short-lived (up to about a week) and asymptomatic. Most people never know they had it.

By age 50, 80% of women will have been infected with HPV.


Caveat:  I am clearly not a medical doctor, so I am relating in layman's terms what I have learned from my team of doctors in the following paragraphs.. obviously consult your own physician for more information about HPV before making any decisions to vaccinate your child.

What makes HPV tricky is that a person is typically infected in his/her teens or early adulthood.  The virus is 'live' in a person's system for about a week - this is the ONLY time a person is infectious. After the virus leaves the system, the person is no longer contagious, and is also immune.

However, for a small percentage of people, the virus leaves a remnant behind, at a cellular level. If this remnant becomes entangled (for lack of a better term) with the DNA of healthy cell, thus creating an abnormal cell, then tumors develop.  This process can take decades to develop.  Most people infected in their teens (or young adulthood) don't develop HPV+ cancers until years down the road, and for oral HPV there isn't a reliable way to test for its presence in your system.

Being HPV+ does not mean you will develop cancer. In fact, the majority of people who are HPV+ will not get cancer because of it. To date, though, it is not known why some people get cancer and some don't.

HPV is relatively simple to find in the cervix, and a check for HPV is routinely done during an annual pap smear.  A vaccine for the most dangerous strains of HPV is available for girls (and now boys) starting at age 9, and to date it is the only known weapon against preventing HPV related cancers in the future.

It is not possible, however, to reliably test for the presence of oral HPV, as there are too many 'nooks and crannies' for the virus to hide in.

The bottom line?

PLEASE talk to your child's pediatrician about HPV.   This is not just a cervical cancer virus anymore, so mothers of boys - especially because MORE men than women will get HPV+ oral cancers - need to talk about getting their boys vaccinated as well.

Some parents are hesitant to talk to pediatricians about it, or to vaccinate their children, because HPV carries a stigma of being a sexually transmitted disease.  Some parents are concerned they are encouraging promiscuous behavior by vaccinating their children at such a young age.  I'm here to tell you that a simple first kiss, or other innocent skin-to-skin contact, can also transmit this virus.

As I lie in my immobilization mask with radiation beams aimed at my increasingly sore neck and throat, I think a simple vaccine is a very wise step to take indeed.

For more information about oral cancer, including symptoms, click here.

For more information about HPV and oral cancer, click here.

For more information about the HPV vaccine, click here.

5am Thoughts

It's 5am, and I finally give up on sleep and come downstairs to write.

I don't know why you need to know that.  I guess I want to clarify that these are 5am thoughts. The writers and worriers and dreamers and poets and nursing mothers and insomniacs and perfectionists out there know what I mean when I say: these are 5am thoughts.

I woke up thinking about my Dad.  About how profoundly I felt his physical absence this Christmas.  I watched my brother's strong, capable shoulders as he carved the roast, and I thought: Dad.  I counted the number of place mats and chairs we would need, and I thought: Dad.   I sat in church and sang along to "O Holy Night" with tears streaming down my face and thought: Dad.

Christmas was beautiful this year. I didn't know what to expect - how could I picture Christmas without Dad?  His spirit was everywhere, though.  As we sat around the table, chatting and even laughing, as we opened presents, as I watched his grand kids play. I felt joy and sadness in equal measure; I didn't realize those two emotions could cohabitate so effortlessly together.

After everyone went to bed Christmas Day Eve, I sat and sipped my tea, took in the colorful lights of the tree and the presents piled everywhere, and thought:  this is good.  We are lucky.

I woke up thinking about my Dad for another reason:  today I start chemotherapy.  I didn't talk about it much on this blog - it wasn't mine to talk about - but my Dad was a cancer survivor.  He had Lymphoma.  It was confined to his spleen, so after his diagnosis the recommendation was to 'wait and watch'.  When his spleen became too enlarged, it was removed, along with all his cancer. 

As his daughter, I never felt truly scared for him, not really.  I know now that he must have worked at not showing too much fear to his kids. It's possible, too, that maybe he didn't feel a lot of fear.  I sit here waiting for my first day of chemotherapy and I'm kind of wondering when the fear will show up.

Maybe what he felt was gratitude, an appreciation for the small things, for what really matters. Maybe he had strong faith in his doctors, and in his God, and that kept him strong.  Maybe he knew that pounding his chest and wailing about the unfairness of is all is a complete waste of time and energy.

My Dad never experienced radiation or chemotherapy, because the surgery extracted all the cancer.  What he did experience - and I'm learning that it's the toughest part of the whole thing - was the waiting.  The periodic scans he had to take - even after the surgery - at 3 months, then 6 months, then every year.  

Ultimately, he died in a roundabout way from cancer; without a spleen he couldn't fight back an infection in his blood. I'm glad for him that he didn't know that day was coming, that he didn't have to endure months of a slow decline.  He proudly wore his "Live Strong" bracelet, and I will always think of him as a cancer survivor.

He knew what it felt like, though, to be cruising along in life, only to glance at the appointment book, see scribbled at 2pm the next day "PET Scan", and think - oh yeah, cancer.

It changes you.  It has to. I realize now that there is a Cancer Me.  I never knew her before - how could I?  If anyone even mentioned the word cancer to me before, my heart rate elevated and I broke out in a cold sweat.   I could never, ever, have envisioned that Cancer Me is calm, determined and grateful.  Cancer Me is also apprehensive - mostly because I don't know what chemotherapy will be like, how sick I'll be.  It's new, and new things are scary.  But Cancer Me doesn't spend a lot of time wondering about the future, if the treatment will work, if I'll beat this thing forever.  Cancer Me doesn't lose herself to fear.

In this respect, Cancer Me is a lot like Recovery Me.  Fear is toxic to me - even more so than the chemicals that will be coursing through my body later today.  Fear makes me want to hide from myself, from my family.  Fear is a dangerous trigger for me, and I have to treat it with respect.  I have to acknowledge that it's there - of course it's there - but the only thing that is actually in my control is how I respond to it. 

I'm totally powerless over the cancer in my body.  I'm totally powerless over alcohol.  The two things aren't that different, really.

So I look fear in the face, pay my respects, and move on.  In hindsight, I can see how much fear governed my life before I got cancer:  fear, ironically, of doctors, of getting sick, of getting freaking cancer.

I'm free of that now that I actually have cancer.

Recovery is similar to that, too.  I spent so much time in fear of what life would be like sober - how would I live? How would I get through the witching hour?  A party? - and once I was in recovery living smack dab in the middle of the thing that scared me most, I realized:  I'm strong, I can do this, and I'm free.

I let Cancer Me and Recovery Me hang out together as much as possible.  They have a lot in common.

I'm just along for the ride.

Downstream

Today is the beginning of the next chapter.

Steve and I head in to the hospital to meet with my cancer team: a social worker, a swallow team (they are taking a baseline of my swallowing today, as it will deteriorate as treatment progresses and they want to ensure I can maintain my baseline as much as possible), the radiology and chemotherapy doctors.

Today is a 'dry run' - they want to be sure my immobilization mask fits, that the machine is calibrated, that all is in working order.  They will do everything but push the button to start radiation.  That will be tomorrow.

I looked at Steve yesterday, bewildered, and said, "I start cancer treatments tomorrow, Christmas is in four days, the kids' schedules are nuts, we have a new sitter starting, and I still have orders to finish and last minute shopping to do.  Why aren't I totally crazy right now?"

He grinned at me.  "I don't know," he said.  "But I'm grateful you're not."

I think it's partly because a cancer diagnosis puts things into perspective.  All the little things I would have been freaking out about last year - those infuriating little details that strangle you as Christmas approaches - they just don't seem very important this year. 

We will have a good Christmas. We will be together as a family.  We are so blessed with amazing friends and an incredible network of support.  We are lucky.

I also think I'm calm because it feels so much better to be calm.  My good friend Ann designed a necklace for herself, one that reminds her to go with the flow. It was a simple stamped rectangle that said "downstream".  I loved it so much I made one for myself, and I added a soothing aquamarine crystal and a Yin Yang charm.   I'm wearing it today, as I hold my chin up and march towards this next chapter of my life. 

Downstream reminds me to pick my feet up and let the current take me where I'm meant to go.  It helps me stay in acceptance and surrender.  That's not the same thing as giving up - not even close.  It has everything to do with being present, with feeling gratitude for what is, rather than resentment for the way I wish things were. 

I took a picture of myself today, at the beginning.  I'm wearing the 'downstream' necklace, and I will keep its message close to my heart.  I am determined, I am hopeful.  I am also tired.  And it's all okay.

It's just the beginning of the next thing.  There will be many more next things, many more beginnings. 

Onward.

Home Base

I stare at my list, reading each item over and over silently in my head:  acceptance, surrender, trust.

I'm not feeling it.

The past two days have been miserable; I'm edgy, angry, resentful.  I can't get out of my own way.   My back hurts again - a lot. When Finn was sick this past weekend I carried him upstairs into bed; maybe that did it. I don't know; all I know is that every movement hurts. 

It feels like the last straw. I don't want to have cancer. I don't want to have an injured back. I just want my life back.

The kids are running all over the place, playing some kind game that is a combination of hide-and-seek and tag.  Their squeals of delight grate on my already frayed nerves.

I just want my life back, I think again, miserably.  I want my only worry to be last minute Christmas shopping.

Finn slips on the hardwood floor and goes down hard. I don't go to him. I just can't. I hear Greta soothing him - you're okay, buddy. Just rest for a minute and then let's play again.

I am frustrated with myself, because I know I'm making myself miserable. I realize that I can choose how I feel, how I react to my situation, but I'm tired of the high road. I'm tired of brave and strong.

Taking a deep breath, I read my list again.  Acceptance, Surrender, Trust.  I say it over and over again, hoping the repetition will drum them into my stubborn head.

The kids resume their game, and I reluctantly pull myself up out of my chair.  There are lunches to pack, breakfast dishes to wash and put away.

As I scrub bowls coated with dried up oatmeal, I think of the days to come.  I haven't even started treatment, and already I feel weary right down to my bones.

Greta bursts from behind a closet door, runs up to me and wraps her arms around my waist.  "Home base!" she yells.  "Momma's home base!"

Momma's home base, I think, wincing. But for how long? Until the radiation and chemo take their toll and I can hardly get out of bed? And what if the treatments don't work? Who is going to be their home base then?

Tears spring to my eyes; thankfully Greta runs off and doesn't notice. I creep upstairs, clutching my list, and flop face down on my bed, my back yelping in protest.

I cry, hard, for a few minutes. I haven't cried much since the diagnosis, and the emotional purge feels good.  The kids are still running around downstairs, laughing, and I find myself smiling, just a little.

I roll off the bed and onto my knees.  Please, God, I pray, help me find peace of mind. Help me get out of my own way. Help me have gratitude. Help me surrender. 

Faith.  The words pops into my head, unbidden. Have a little faith.

Leaping up, I grab a pencil of my bedside table and scrawl another word onto my list:  Faith.

I wipe the tears off my cheeks, and make my way back downstairs.  Finn pinwheels around a corner, with Greta hot on his heels. 

He grabs my hand, smiling triumphantly. "SAFE!"  he yells.  "I have Momma, and I'm SAFE!"

My New Normal

"Mom? Can I have breakfast?"  Greta's voice reaches me through a deep sleep.

"Sure," I mumble, glancing at the clock. It's 7:14am; Greta wakes me up at the exact same time every morning.

I swing my legs to the floor, thinking about the day: Greta has a birthday party today, gotta buy a present. Finn needs to bring a donation to school today, have to finish that jewelry order.

Rubbing sleep from my eyes, I pad into the bathroom, splash cool water on my face and reach for my toothbrush. Glancing in the mirror, my stomach does a little flip-flop as my eyes rest on the lump on the left side of my neck.  Oh yeah, I think. Cancer.

I shake the thought from my head and finish brushing my teeth without looking in the mirror.

Downstairs it is the usual whirlwind of activity - packing lunches, finding shoes, hats and gloves. The kids pepper me with questions: does the Elf on the Shelf get cold when he flies back to the North Pole every night? How many days until Christmas? Can I have a play date today?

I move effortlessly through the finely choreographed dance that is our mornings, deftly answering questions while finding a stray sneaker under the couch.  The familiarity of it soothes me, even as I try to ignore the new, silent soundtrack to my life: will I be able to do all this in a few weeks, after treatment starts?

The kids twirl in the driveway as they wait for the bus; their breath puffing white in the cold. I wrap my hands around my coffee mug, treasuring its warmth.  Enjoy it now, comes the unwelcome thought, when you need the feeding tube there won't be any point to coffee anymore.

The bus rumbles to a stop at the end of our driveway, and I wave and shout: "Love you!  Have a great day!" like I do every morning.  The bus pulls away, and I walk back into the house. Its silence makes me edgy.

I pull a huge load of clean, dry laundry out of the dryer and walk upstairs to fold, grateful for the strength in my body. I'm told I will be very tired.  I don't grumble about doing laundry anymore; the normalcy of this small chore feels like a gift.

As I fold the clothes and put them away, my mind wanders to darker thoughts. I try to push them away.  Don't go there until you get there, I think, rolling a piece of advice from a member of my cancer support group around in my head.  But the darkness persists, poking its unwelcome nose into my day.

This is my new normal, the reality of my days as I wait for radiation and chemotherapy to start next week.  I can go for little stretches of time where I don't remember, where life feels like it always did, and then wham - I hit a little speed bump, a thought or fear drops into my head and I remember:  cancer.

Eight days until treatment starts, I think.  Eight long days of waiting, wondering what it will be like.  I start to make a list of everything I need to do to clear my decks, prepare for treatment:  firm up the babysitter, type up a schedule of the kids' activities, clear out the freezer, finish up jewelry orders... the list goes on and on, and it makes me feel overwhelmed.

I crumple up the paper and make a new list:

1) Accept
2) Surrender
3) Trust
4) Don't go there until you get there

Then, after some thought, I smile and add one more item to the list:

5) EAT

I will enjoy every treat, every warm meal, every cup of coffee, every dessert over this holiday season.  I will lose weight on the feeding tube, I will lose my sense of taste for months during and after radiation treatment, so I'm going to wallow in food for the next two weeks.

The panic that was stirring in my gut settles down as I gaze at my list.  One moment at a time, I think, just like recovery.  I'm only truly miserable when I resist my situation, when I wish things could be different than they are.  Accepting something you desperately don't want to be true is hard, but it works.  It brings peace of mind, even during the worst of the fear. 

I can do this moment, I think.  In this moment, I'm okay.  Now, on the next one. 

 This post is part of Heather of the Extraordinary Ordinary's link-up, Just Write, where we - well, just write.  Unedited, unscripted and straight from the heart. To join us, click here.

The Luckiest Unlucky Girl

My Mom and I are sitting in the oncologist's office, listening to instructions on proper mouth care during neck radiation.

I have just come from being fitted for an 'immobilization mask', which is a sheet of webbed plastic that is molded to your head, neck and shoulders to keep you completely still while the radiation is administered. 

It didn't hurt to be fitted, but it was an unpleasant, claustrophobic feeling.  I'm told I will get used to it.  The mask is a giant leap forward for radiation treatments; in the not-so-distant past they would have had to tattoo my neck and face with 'X's to know where to aim the radiation.  

It's such a strange feeling, this see-saw of unpleasantness and gratitude.  On the one hand, I don't want to be here at all.  I don't want an immobilization mask, or radiation treatments.  On the other hand, I don't have to have my face tattooed.  I'm consistently grateful for things that would have been unthinkable a mere two months ago.

In the past week and a half, I have had four scans: one MRI, two CT Scans, and a PET Scan.   The PET Scan, which is used to detect the presence of cancer anywhere in the body, was Tuesday night.  It is the one I am the most nervous about; if cancer is found anywhere else I'm not sure I can take it. 

I can't concentrate on what the nurse is saying about oral care.  Before this appointment I handed the head oncologist a CD with my PET Scan results, and we're waiting for him to return and tell me how it looks.

"As you near the end of your treatments," the nurse says, "you will have what is essentially a bad sunburn across your whole neck.  Here is a list of products we recommend to ease itching, soreness and wound weeping."

All I hear is 'wound weeping'.

She finishes up, asks me if I have any questions, and leaves.  A few moments later there is a soft knock on the door, and the head oncologist comes in the exam room, closing the door behind him.

His face is unreadable.

"It's good to see you, Ellie," he says, still poker faced, as he settles onto a stool.   There is an interminable silence of about ten seconds, which feels more like ten minutes, and then he looks at me and says, "So, your scan looked good."

All the air rushes out of my lungs; I hadn't even realized I was holding my breath.  I'm so grateful I feel like crying. 

"OH, thank you," I say, as if he had something to do with my cancer not spreading. 

He starts going over my treatment schedule, but once again I can't concentrate.  The scan looked good, the scan looked good, is running through my head.

And there I am again, on that see-saw of fear and gratitude.  I have stage four cancer, I will have to endure seven weeks of daily radiation and six chemotherapy treatments, and here I sit full of gratitude and relief that it is only in my neck.

It's a reality of life with cancer. It's the reality of life.  It can always, always be worse. 

I feel like the luckiest unlucky girl.

Storytellers

In the midst of all the new, scary things that are going on in our family these days, nothing makes me smile like my kids' made up stories.

Finn, in particular, is quite the storyteller these days.  Sometimes he recounts his dreams (most of them involving the Elf on the Shelf lately), sometimes straight from his imagination, and lately he has been making picture book stories ....  they tend to run on the long side, so I've spared you about a ten minute chunk and showed you two short highlights from the beginning and the end of the "Apple Spaceship Story".

Here's Finn:



Now imagine this goes on for about ten minutes longer, before we move into the big finish:




Greta has a new story, too - narrated (in her jammies) here for your viewing pleasure.  A very short tale of jellybeans run amok:




It's the simple things that matter most - simple moments, simple stories, simple smiles. These are the gifts my kids give me, every day.

Growing Pains

My emotions have been up and down so much for the past couple of weeks.

The slap-in-the-face shock of the initial diagnosis, the dazed-and-glazed feeling of information overload, the slow-burn-panic of getting test after test, scan after scan, and waiting for results.

I can go from 'Yay Team We're Going To Beat This!' to knee buckling fear in the blink of an eye.  It's exhausting.

There are moments of profound gratitude - deeper than I've ever experienced before - as I look into my kids' eyes and simply wonder at the beauty of their existence, of how truly lucky I am.   Twenty minutes later I'm watching them play dress up together, giggling and worry-free, and I sink into a sadness so deep I feel I may never get out.

But, of course, I do.

Up and down I go, travelling this unknown road, and marveling at the unfamiliar sign posts; some are staggeringly beautiful, others fill my soul with fear.   It's all so new.

I cherish the moments of sweetness, of peace.  I don't care about mundane worries anymore, and there is a feeling of freedom in that.  I spent ten minutes marveling at my son's long eyelashes yesterday, lost in my deep love for him.

That would not have happened before.  

We had a couple of big decisions to make:  (1) whether or not to have surgery to remove the secondary tumor in my neck (the primary tumor was in my tonsil and removed during the tonsillectomy) before starting radiation and chemotherapy; and (2) where to receive treatment - the world class cancer facility 20 minutes from our house that treats only cancer but that doesn't see many head/neck cancers, or the world class facility in Boston that sees only head/neck cancers, but will be difficult to get to everyday for radiation.

Today we consulted with a team of Boston doctors who work exclusively with head/neck cancers.   I walked into that appointment feeling overwhelmed, lost and more than a little fearful and confused.

I left the appointment feeling lighter, hopeful, confident.  I walked out with a plan. I'm always better when I have a plan.

Not only do these doctors and nurses really know their stuff, they are full of compassion and humor.  The humor part matters to me.  A lot.  We talked for four hours like human beings, not like doctors talking at a patient.  

I do not need surgery before beginning chemotherapy and radiation, which is great news.  I was worried about what the results of my recent scans would show, and my chest CT scan was clear, so the cancer didn't spread to my lungs, which is where it goes after the lymph nodes if it spreads.   I sent more than a few prayers of thanks up for that one.

I can receive a different type of chemo than I had discussed with the other oncologists; one that has side effects that are MUCH less stressful on my body.  I won't lose my hair.  I'm embarrassed to admit how much relief I felt when I heard that, but it's the truth.

I will need the feeding tube in my stomach, but not before treatment begins, like the other team had recommended.  It will be put in about halfway through treatment, unless I need it earlier.  

Thank heaven for second opinions.  I'm so glad we took the time to get more information, that we didn't reject the idea of going into the city just because it's inconvenient.  

And I realized something today, sitting in the exam room, chatting with the physicians.  I'm adapting.  Eight weeks ago I was so nervous to go to my primary care physician just to have a simple check-up that my blood pressure skyrocketed.  Today I'm sitting in a room full of cancer doctors with no butterflies in my stomach.  I'm even laughing.

I can feel it - the stretching and growing in uncomfortable ways.  I don't like the pain, of course I don't, but I know that I learn the most when I'm stretching myself into places I don't like to go.   I spent so much of my life in fear, and here I am smack dab in the middle of it and I'm okay. 

The human spirit is a wondrous thing.

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

Climb

I feel a little uncertain writing about what's going on.  It may seem crazy to some to share here, in this space, these intimate details and fears. 

But I'm grateful for the urge to write, to come here and put words on a page.  I feel like I'm on shaky ground, and writing orients me, plants my feet firmly underneath me.

The next few days are going to be challenging. 

Earlier this month, when I first went to see the doctor about my swollen lymph node, in a fit of bravery I also scheduled an annual physical and routine mammogram.  I hadn't had a physical in two years, and had yet to schedule my first mammogram, even though I'm 42 - two years over the recommended age to begin having annual mammograms.  Fear has always stopped me, before.

The physical was Friday, and the doctor recommended an ultrasound of my neck, as well as an ultrasound of my ovaries; when I delivered Finn they discovered cysts and I was supposed to follow up and monitor them.  Six years ago.

My mammogram was on Friday.  I knew going into it that follow-up pictures and ultrasounds are very common, so I steeled myself for the call that said I had to come in for follow-up.  My doctor even said to me that many women have to have follow-up visits, and - in her words - she advised me "not to freak out".

All my bravado didn't help much when the call came today, asking me to come Monday for more pictures and a bilateral breast ultrasound, to follow up on questionable images that appeared in the mammogram.

Over the next five days, I have an ENT appointment for my swollen lymph node, neck and ovary ultrasounds and an additional mammogram and breast ultrasound.

I'd be lying if I said I wasn't scared.

My rational brain says to me:  Good for you, Ellie. You're covering all the bases, looking for answers, facing all of these issues head-on.

Unfortunately, not all of my brain in rational.  As I hung up the phone after getting the call about the follow-up mammogram, I was trembling with fear.  No more, I thought.  I can't take anymore.

On the heels of this thought was a craving for a drink. It hit me like a tidal wave - a knee buckling desire to hide from everything. 

I walked to the couch and sat down, taking deep breaths.  The craving followed me like an imp from hell, leaping madly about and cackling:  you don't have to feel this, you know, .

I sat with the craving for a while; examined it curiously.  I can go to the liquor store anytime I want to. The kids are at school, I could have a couple of pops and sober up by the time everyone got home.   The imp waved its hands over its head in delight, squealing:  yes!  yes!  

Feeling something almost like regret, I sighed, because I knew I wasn't going to drink.  A drink would leave me ashamed, afraid and alone, and none of my other problems or fears would be any better.  I know this, but it doesn't stop the cravings from coming.  I'm an alcoholic; the urge to drink may always be my default reaction to fear.

I stared at the phone, knowing I should call someone in recovery and talk this through, but I didn't have the energy.  Just sit with it for a while, Ellie, I thought. Think it through.

After a while it came to me, what the trigger to hide is about: uncertainty.  While I am afraid of a scary diagnosis from any of these health issues, I'm much more afraid of the not-knowing. 

What I can't stand is being in this purgatory - this limbo - where my anxiety is free to run wild.

This is what life on life's terms is really about: uncertainty.  The irony is that the uncertainty is always there, but it's only when something comes along to knock us off the rails that the full scope of uncertainty comes into view. 

It's like we're walking along a flat, grassy plain, the moments and days sliding effortlessly by, when suddenly we round a corner and are met with an obstacle: a rocky mountain path. 

We have a choice. We can fall in a heap at the base of the mountain and bemoan our situation, disappear in a drink, a drug or other form of escape, wondering why me?   Or we can climb, slowly but steadily, and tackle the mountain one step at a time, instead of collapsing under the thought of its massiveness.

I choose to climb.

On Not Leaping Before Grace

This isn't a post.  Not really. 

I haven't blogged or written a word in almost two weeks; that's never happened before.  My creative/writing brain is off somewhere... it has fled to the hills, or wherever it goes, and I don't have it in me to write something creative. So this is just an update, of sorts.

I've gotten so many 'where are you' and 'are you okay?' emails, and I appreciate each and every one of them.  Thank you, everyone, for all your heartfelt words of encouragement, advice and support.  I will try to respond to all of them, but truth be told I'm not on the computer much these days.

I'm okay. Mostly. Or, at least, I will be.

I'm in a kind of purgatory, an emotional limbo.  The anxiety is still there, and it sucks so much of my mental energy that I've scaled way back, simplified my life, focusing my energy on the thing that matters most: my family.

There is some kind of medical thing going on; the swollen lymph node in my neck that I wrote about in my last post is still there, and it is the source of most of my anxiety.  I don't have answers, not yet, as to what it is.  I'm getting lots of tests, talking to doctors and specialists. I'm not sticking my head in the sand and ignoring it, which would have been my old response to fear.  I'm talking to people - my close friends and family - and I'm not isolating, even though I want to.  Badly.

I don't get to go around things anymore; I don't hide in a bottle or curl up into a ball.  I'm mostly grateful to be sober, to be present and feel my feelings, work through this instead of skirting around it.  Whatever the outcome, I know this is a hurdle I'm meant to face; I'm learning, slowly, how to sit with fear, breathe and talk through it. Fear is forcing me to grow and stretch in ways I haven't had to do since I got sober. It hurts, but it's like the ache you feel after a tough workout - I feel a twinge of pride in the pain, knowing that I'm pushing myself towards something.  A breakthrough, not a breakdown.

Day to day life hasn't changed much at all. I shuttle the kids back and forth to activities, make small talk on the sidelines of soccer fields and birthday parties. I play with the kids, help with homework, administer baths and read bedtime stories. I pack lunches and prepare dinners; I show up where I'm needed, and I try mightily to be fully present for my kids.  Through all this an engine of fear churns madly in the background of my brain, and during the day I tuck it away, put my Mommy poker face on for the kids. 

Then I tuck them into bed, the house grows quiet and the engine churns louder - it's clanging and banging is a familiar soundtrack, now. 

I reach for other distractions - reading, exercising or sleeping, mostly.  Two things I don't do?  I don't drink or eat myself into oblivion.  I have to keep reminding myself that this is progress.

I've been thinking a lot about control, about how badly I want the hard stuff to be solved - tied up in a neat little package with a pretty bow on top.  So much of the challenges in the past few months have been completely outside my control.  My Dad's sudden death in June, and my unexplained health problem.  These things just are, and I can't think my way out of them.  Anxiety is my brain's way of trying to control the uncontrollable.

I ride the emotional ups and downs.  I sit with pain. I breathe through fear. I have gratitude for the peaceful moments. I hug my kids and my husband.  I talk and talk and talk. 

I try not to leap before grace. 

I don't know how much I will be writing here in the coming days. That's outside of my control, too. I know I can't force words that don't want to come.  I have faith they will come back, in their own time.

In the meantime, I wait. 

Talking About It

I'm typing this post - just sitting and writing - without any idea what I'm going to say.  Usually, when I sit down to write, I have been rolling a thought, image or idea through my head for a couple of days, mentally writing and editing the post, so by the time I sit down to type the words flow freely.

But there isn't much that is usual about things these days.

I'm struggling.

The anxiety I wrote about in my last post has a stranglehold on me.  It's so hard to write about it, to find words that describe the breathless, panicky feeling that permeates my existence these days.  It leaves me feeling spent, exhausted, flat, and I move through my days like an automaton; the simple act of moving from one end of the day to the other feels overwhelming, most of the time.

It's ironic, in a way, because in the wake of the Redbook article I'm getting several emails a day from women who saw their own story in the words, and most of them are asking one simple question:  HOW?  How do I get through just one simple day without my nightly crutch of wine?

The advice that pores from my fingertips is straightforward, and yet hard to do: get honest, start talking, ask for help, break your old patterns, find healthy distractions, and don't try to do this alone.

In the grip of anxiety I feel exactly like I did when I first got sober, like my skin has been peeled back and I'm a walking exposed nerve.  Lights and sounds bother me, I struggle not to be short with the kids, and the simple act of going to the grocery store feels overwhelming.  To keep the panic at bay, I slip into neutral, my face and voice go flat, and the spark in my eyes is dim.  I read and sleep a lot -- two places where my brain leaves me alone for a period of time - and drop eagerly into the escape they bring.

It's a balancing act of facing fear head-on and keeping things as simple as I can.  I'm breaking old behavior patterns, changing my old reactions to fear. Health worries have always been where my anxiety manifests itself the most - even when I was a child - and now that there is a legitimate concern my mind obsesses on it, constantly.  Instead of sticking my head in the sand and avoiding the doctor due to fear, I'm talking to her, trying to get some answers and some help. 

I'm also cutting out stress where I can.  We made the difficult decision not to sell our house, for a variety of reasons, but the stress it introduced into my already fragile state was a factor.  

I'm talking to people.  A lot. When trusted friends ask me if I'm okay, I answer honestly that I'm struggling.  The mere act of unburdening my load - sharing it with others - is a profound relief.  It's hard to tell people I'm not okay, that I need help.  My ego winces - shouldn't I be able to handle this?  But I know in my heart that I can't make it through this alone.

Logically, I understand where this is coming from, that my Dad's sudden death triggered this ancient fear, and the added stress of selling the house and health worries were simply too much.  But I can't think my way out of this; knowing where it's coming from is of little help when I'm in the grips of a panic attack.

It's bigger than me.

And I know, too, that I will be okay.  I know I'll be okay because when obstacles are thrown in my path it means I am in the process of stretching, growing, learning.  Whatever the outcome, of any of this, I know that because I'm going through it, not around it, I will emerge with deeper self-awareness, strength and faith.

In the meantime, I'm talking, getting help and I'm not going through this alone.  The power of sharing my truth, and the support, comfort and community it brings to me, will never cease to amaze me.

~~~~~

This post is part of Just Write, a free writing link-up hosted by Heather of the Extraordinary Ordinary.  To learn more about it, click here.  To join us, click here.



Anxiety

I'm sitting on the ratty couch at Finn's karate class. Greta is wiggling beside me, bored, playing Angry Birds on my phone. 

My mind is racing, thinking about my more-than-full plate; it has been a stressful week.  Steve is away on a trip, gone five days now, and I'm in the final throes of negotiating an offer to sell our house. Contractors and inspectors have been traipsing through my house for days; between them and meetings with brokers, juggling our hectic schedule and working, I feel stretched beyond my limits.

I sigh, and lean my chin on my hand.  My body freezes: what's this?  The heel of my palm feels a lump in my neck. As my fingers probe deeper, feel the contours of a hard, round ball nestled just below my jawline, an icy blade of fear slices through the middle of me.

My hands start to shake, my palms sweat.  My extremities go cold with panic, and my gut clenches. I can feel myself start to shut down.

Somehow I make it until the end of Finn's class, shuffle the kids home and go through the motions of cooking dinner, doing homework, brushing teeth.  They chatter on about the usual things, oblivious to the raging sea of panic that boils within me. I can barely concentrate, my brain is paralyzed with horrible images.

I tuck them into bed, slump downstairs and curl into a ball.  I'm dying, I think.  It's got to be something awful.  The anxiety that has been dogging me since my Dad's death, flitting around the edges of my consciousness, kicks in the door and settles on me like a cold blanket.

I remain frozen in a ball, unable to fight back the fear.  A tiny, rational part of me knows my reaction is disproportionate, that I'm coming unglued, but I can't help it.   I just don't have any reserves left.

I think about all the times I have told women to face fear, to talk about it, to feel pain and not go around it.  I would do anything to go around this, to disappear from myself for a while.  A drink would do that, I think.  Just a couple of drinks to take the edge off the fear, bring me back to baseline.

Even as I think these thoughts, I know I'm not going to drink. I know what I need to do.  I pick up the phone with trembling hands and make a doctor's appointment for the following morning.  Face it, Ellie, I think. Don't hide.  After making the appointment I call some friends, cry a little, and box myself in.  I tell them what is going on, and ask them to make sure I go to the appointment.  I know I'm in a place where I can't trust my own thinking.

~~~~~

The doctor rips off the blood pressure cuff with a loud scritch, and gives me a concerned look.  She tells me my blood pressure is scary high, and asks if I have been under stress lately.

I open my mouth to say 'yes, but nothing I can't handle', and instead hear myself babbling on about all the pressure I'm under, the knife blade of fear, the anxiety that won't leave me alone.  I am surprised to hear myself talking about how my Dad's death from an infection - so unexpected, when he was so healthy - has left me paralyzed with fear.  "It's all so fragile," I say.  "It scares me." The tears run down my cheeks as I unload it all. 

"I need help," I choke. "I can't live like this anymore." 

Three simple words:  I. Need. Help.   Oh, they are so hard to say, but once the words are out of my mouth, I feel a weight lifting, and a sense of lightness and peace comes over me. 

We talk awhile about anxiety, about how it is effecting my health, my blood pressure, and how there are medications that are safe to take in recovery.  She tells me it isn't about will power, that I can't think my way out of it, that anxiety is a physiological condition, and in it's acute form - like I'm experiencing - my usual tools of exercise, rest and good nutrition aren't enough.   We talk about how the anxiety jeopardizes my recovery, how I'm triggered when I'm hit with a panic attack. 

"It's okay," she says.  "This has nothing to do with how strong you are." 

I've been here before, when I got sober, and I know the drill.  Surrendering my will is hard, it feels like defeat, but I know in my heart it isn't.  It's the way out of my mental prison, the path to freedom.

We agree to watch the lump in my neck - I have other symptoms of a cold, so it could be a virus or infection causing a swollen lymph node - and make an appointment to follow up again in a few weeks. 

As I drive home, I think about acceptance, about how my brain longs to control something uncontrollable.  No amount of emotional hang-wringing or anxious thinking will change the outcome of anything; all anxiety does is ruin the moments right in front of me, here and now.   The fear tickles at my consciousness, scratches at the door, whispers: let me in.

I breathe in faith, breathe out fear, and bring myself back into the moment.   I'll get through it, whatever it is, I think. One moment at a time.

~~~~~~~

 

This post is written for Just Write, Heather of the Extraordinary Ordinary's writing exercise, where we, well, just write about our ordinary and extraordinary moments.  Come join us, here. 

Parenting and Teenage Drinking - What Would You Do?

We are very open with our kids about alcohol.

We explained to them that I have an allergy to alcohol; at their ages this is the best way to explain a concept as complicated as alcoholism.  Greta has asked if she has an allergy to alcohol, too, and we told her that we can't know yet, but that alcohol allergies are hereditary, and she will have to be more careful than most about drinking. 

We also explained that drinking at a young age increases her chances that she will have a problem with alcohol later in life. A recent study indicates that people who reported starting to drink before the age of 15 were four times more likely to also report meeting the criteria for alcohol dependence at some point in their lives.

Her response was to say "Well, then, I'm never going to drink alcohol. If someone asks me I'm going to say NO THANK YOU!"

If only it were that simple.

The statistics about teenage drinking are hair-raising.  72% of teenagers in the US admit to using alcohol at least once, and 2 out of 5 teenagers say they drank alcohol within the last month.   Studies also show that when teenagers drink, they tend to binge drink - consuming 4 or more drinks at a time.

As parents, we all want to believe our teenager would be one of the 28% of teens who don't try alcohol. We do our best to teach our children to make smart choices, we advise them of the dangers of drinking.  We consider good grades or a stellar athletic track record as indicators that our kid couldn't possibly be drinking.  But the statistics are frightening, and even if our own kids are trying to make smart choices, chances are they have friends who aren't.

We all remember the power of peer pressure, of wanting desperately to fit in.  Smart choices have a way of fading into the background in the face of peer pressure. 

I can see it in my mind's eye - Greta and some teenage friends hanging out in a parking lot after a movie, or having an innocent get together at a friend's house. Suddenly a bottle appears from someone's pocket, and gets passed around.  When the bottle lands in her hands, I would love to believe that all our education and open communication would lead her to say 'No thank you,' like her 9 year old brain believes she would.  I would also like to believe she would remember the dangers - elevated for her - and pass the bottle along without taking a sip.  I know she would want to make the right choice, but would she?  

I remember my first sip of alcohol, how it calmed my nerves, made me feel whole, comfortable in my own skin.  For someone who struggled with anxiety her whole life, alcohol was like a magic elixir.  Greta has anxiety, too, particularly in social situations, and my gut churns to think about how her resolve not to drink may fall to pieces when she feels alcohol's magic effects.

I also know I am powerless over what happens, to a large degree.  I can educate, encourage her to communicate with us about drinking, spell out the consequences from drinking in startling clarity.  But how can I put more power into her hands to make the right choice, to help her fend off peer pressure?

It's a fine line between trust and facing a stark reality:  most teens drink.

Technology, of course, is coming up with new devices to address the growing problem of teenage drinking.  Sober Link is such a device; a wireless blood alcohol level monitor that a teen can blow into from anywhere, and it wirelessly and immediately provides parents with their child's blood alcohol level and location.   My immediate reaction upon hearing about this was at a visceral level:  I trust my child, she will make smart choices.  I won't need something like that.   But then I watched the video below, and thought about it some more:




I thought about the scenario in the parking lot, of the bottle being passed around.  If Greta wanted to make a smart choice, but felt pressured to drink, having this device in her pocket would give her an out, would empower her to say she can't drink.  

It feels draconian, on some level, but it doesn't have to be. I do trust my children, and I wouldn't give her a device like this one because I don't trust her, I would give it to her to empower her to make the right choice, if she wanted to. 

At nine years old, Greta is eager to listen and receptive to our advice. I hope she stays this way through the difficult teen years, but I hear stories of how communication changes - and not for the better - when kids hit their teenage (and even pre-teen years).  I recognize that I can't stop her from drinking, if she's determined to try.  Kids make mistakes, they make wrong choices, and oftentimes we learn more from our mistakes than from our successes.  But the stakes are so high with teenage drinking; one wrong choice can have disastrous consequences. 

What do you think?  Would you give your teenager a device like this?  If you wouldn't, why not?  How do you talk to your kids about drinking, and at what age do you/did you start? 

~~~~~

Full disclosure:  this is a sponsored post.  I get a lot of requests for sponsored posts, but decline them because they aren't topically relevant to my blog, or of interest to my readers.  I am fascinated by how technology can help (or hurt) teenage drinking, so I jumped at the opportunity to talk about this more.

Giggles and Grace

Greta is nine.

NINE.

Long gone is our chubby cheeked little baby; she is growing into a young woman, full of giggles and grace.

This is for you, sweetheart.  We love you.   HAPPY BIRTHDAY:



Song is "Whole Wide World, by Mindy Gledhill. Thanks to Heather for introducing me to this song; Greta and I love to sing it into our hairbrushes...

Tightrope

The kids run ahead of me, clattering up the walkway to my Mom's house.  I trail behind, laden with bags of presents, an ache in the middle of me.

"Happy Birthday, Greta!" my Mom chirps from the doorway, bending down for hugs.

This moment is always hard.

I can see him there, in my mind's eye, standing behind my Mom and grinning his big, proud grin.  

"Hey there, kid" my Dad would say, and give me a wink as he wrapped me in his strong embrace. 

But, of course, he isn't there. 

The absence of him seems impossible, because in my mind and heart he's everywhere.

My Mom and I exchange a hug and a smile; behind the real joy in her eyes I see the sadness, and a silent acknowledgment - I wish he was here, too - passes between us.

Finn scampers away, digging around for toys and snacks.  On the table in the living room is a colorful pile of presents, and Greta flashes me a big grin. 

As my Mom and the kids chatter - how is school, what's your favorite subject, do you like riding the bus - I breathe deep, let the emotions come.   

I picture him standing in the kitchen, "El, can I get you a cuppa?" he'd say, bringing out mugs for coffee.  Then he'd give the kids a mischievous glance and make that funny sound with his mouth, the one that makes them collapse into giggles.

I need this private indulgence, this ghost landscape of what would have been.   I carry memories in my heart, take them out and roll them through my mind like glittering treasure, and through the ache they comfort me.

We move through the day, go through all the usual motions, balancing the profound feeling of loss with happiness, like tightrope walkers.  We're figuring it out as we go along, eyes locked straight ahead, because if we look down we could lose ourselves to the sadness.

As Greta rips into her gifts, Finn slips silently into my lap and leans his head on my shoulder.  I stroke his spiky hair, and place a little kiss on the top of his head.

After a moment, he buries his head into my chest and whispers, "Momma?  I miss PopPop."

"Me too, buddy.  Me too."

~~~~~

This post is part of Heather of the Extraordinary Ordinary's link-up, Just Write, where we free write about our ordinary and extraordinary moments. Learn more about it here, and then click here to join in.

The Last Cookie

I'm sitting with five or six other moms, at a little lunch get-together at a friend's house.  We're sipping coffee and chatting, pleased to be at the stage in our lives where we have school aged kids and can finish sentences, bond together as women and not just as moms.

The hostess places a platter of homemade chocolate chip cookies in the center of the table.  We make the usual exclamations, and reach out simultaneously to pluck a cookie from the plate.

Minutes pass, sipping and chatting, and eventually there is only one cookie left. Every now and then someone's eyes dart to the platter, but nobody reaches for it.  I call this the 'cookie dance' - nobody wants to be the one to grab for the last one, even though we're all thinking about it.

After a while we drift away to sit and chat on the more comfortable couches, and by the time I stand up to leave the last cookie is gone.  Someone, at some point, snuck away into the kitchen and polished it off when nobody was looking. 

On the drive home I think about the last cookie, about the unspoken code that nobody wants to be the one to eat more than the others.  Part of it is politeness, perhaps, but my suspicion is that somehow scarfing the last cookie represents some kind of weakness, a feeling of need that nobody wants to reveal. Or, perhaps, it is a fear of vulnerability, that the other women will somehow have something over you - they could restrain themselves, and you had to have just one more.

But you know who's really not going to reach for that last cookie?  Someone with an unhealthy relationship to food.  For that person, who is sitting and chatting like everything is fine, that cookie is speaking to her. Her fear of revealing her dark secret, her obsession with food (too much or too little of it), is too great.

It reminds me of my drinking days, when I would put on my mask of normalcy, laughing and chatting with friends at a party and all the while my mind was racing, calculating how much I could drink without judgment. When the hostess would come by with a refill, I would place my hand demurely over the top of the glass and say, "No thanks, I'm driving," and then later at home, when nobody was looking, I would drink like I wanted to. 

We go to great lengths to conceal suffering and vulnerability.

All this makes me think about how important our reactions are to people who take the brave step and admit their vulnerabilities out loud. For someone struggling with a secret obsession, like drinking or food, the expectation of judgment is so great, it keeps them silent and stuck in their secret would of suffering.

If a friend came to you and admitted she had a problem with food, that she was turning to food for comfort and distraction from boredom or pain, would binge eat in secret and then feel terribly about herself (or maybe purge), how would you react?  Would you say "Well, I can stop at one cookie, why can't you?"  Would you feel that tug of superiority that you don't have that problem?  Or would you find a way to identify with her silent suffering, her feelings of inadequacy, her pain?

When someone breaks out of their silence, comes forward and admits they have a problem, they are extremely vulnerable because we are hard-wired to fit in, to color inside the lines, to stay with the pack.  But our sense of the pack is skewed - when you're struggling you think everyone else has it figured out, that you're weak or flawed.  The reality is everyone has something they wouldn't want the world to know about, a way they think or behave in the privacy of their own little world that they don't want anyone else to see.

I realize that alcoholism is really hard to understand for people who don't have any first (or second) hand experience with this disease. The behavior patterns and thought processes of an active alcoholic (or problem drinker) are baffling.  Why on earth would anyone DO that to their lives?  Why would they make such poor choices?  Why would they risk so much for another glass of wine?

The answer is simple, really.  They have a disease, an allergy, an obsession - call it whatever you want - that has taken over their minds and their lives.  They don't want to drink too much, and they are as baffled by their own behavior as you are.  THIS is why getting sober is so hard to do on your own; you are held prisoner within your own body and mind, and need help getting free. 

But asking for that help is hard, because judgment is so prevalent. 

Most women, on some level, can understand food problems, I think. Our culture is so riddled with images of bodily perfection that just about everyone I know diets, or talks about dieting, or has body image issues.  

I find it interesting that visibly obese people are still victims of so much judgment, when most people - especially women - can understand on some visceral level struggling with food/dieting/body image.  We can empathize to a point - when someone says they are dieting we are quick to offer support.  But when someone crosses the line into obesity empathy becomes harder to find, because being significantly overweight pings a fear reaction in people.  That person took too it too far, we think, and instead of offering support and empathy, we avoid, we gossip, we compare instead of identify.

When someone admits to struggling with drinking, or has slid into active alcoholism, they face a lot of judgment.  A large part of this is likely rampant lack of understanding about addiction; people mistakenly believe it is a moral issue or a strength of character problem. If strength of character was enough to stop addiction, there would be no addicts.  But another part of it is a fear response; that person has taken it too far.  We go into that place where we compare ("I'd never drink that much") instead of identify ("she is suffering, and I understand suffering").

My hope is for a world where we can reach past judgment and fear and find empathy. A world where someone can show vulnerability, admit a problem out loud, and find compassion.  We can't understand all problems - and addiction is one of the most difficult to understand - but we all understand suffering.  Stepping outside the pack - reaching for the last proverbial cookie and admitting something isn't perfect - takes courage. And just like we can all understand suffering, we can all understand courage, too.