Thursday, December 29, 2011

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.

Tuesday, December 27, 2011

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.

Wednesday, December 21, 2011


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. 


Friday, December 16, 2011

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!"

Tuesday, December 13, 2011

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.

Thursday, December 8, 2011

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.

Sunday, December 4, 2011


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.

Friday, December 2, 2011

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.