Saturday, January 28, 2012

My Heart's A Stereo

Thursday I had the feeding tube put in, which meant one full day of no food or drink of any kind for almost 20 hours before the procedure, followed by about an hour and a half surgery (under general anesthesia), and waking up in the recovery room hungry, thirsty, in pain  and more than a little confused about what exactly had just happened to my stomach muscles.

Steve met me back at my room and stayed with me for a bit, and I was so grateful he was there because  the after effects of the procedure were WAY more painful than I had anticipated.  The doctors told me to expect to be "uncomfortable", but these felt like labor pains - contractions that ripped across my abdomen every few minutes.  It makes sense, I guess, because to insert the tube, they have to cut through stomach muscles and into your actual abdomen, then stitch in three "tacks" that hold the tube in place for a couple of weeks until scar tissue forms and the tacks can be removed.  I'll spare you the pictures, but the pain was much worse than anything I was emotionally prepared for.

As Steve left to go home that night, I thought about the next day with some trepidation. We didn't expect this surgery to be that big of a deal, so nobody was scheduled to come see me until my brother was going to pick me up after radiation treatment later that afternoon.  In the morning we thought there would be people training me on the use of the feeding tube, but this turned out not to be the case - the training would happen when a Visiting Nurse came to see me at home that night.

All that would happen during the day was that nurses would periodically check my vitals and the "button" site.  They wouldn't even tell me when I was scheduled to be released, but assured me it would not be until much later that afternoon or early evening.

By 10am yesterday morning, I was a wreck.  I hadn't slept much at all the night before, and my mind was racing with all sorts of awfulizing thoughts.  The combination of lonely, scared and in pain had reduced me to silent tears that I would sneakily wipe away whenever the nurses came in to check vitals or something.

So there I was, sniffling away, feeling sorry for myself, wishing I could call someone and chat, but my cell phone battery was lower-than-low and I needed to save the juice, when "BINK" - my cell phone chirped at me that it had a text.

It was from Heather.  "Check your email," it said, simply.

Thankfully, I had brought my Kindle Fire with me, so I clicked on her email, opened the attachment, and found this:

Operation Spiritual Airlift from Heather King on Vimeo.

Even though we are separated by many miles - from coast to the coast - my amazing friends got together and showed me that I'm never truly alone.  Suddenly, I wasn't scared anymore. They reached through the pixelated miles and gave me a virtual hug that made my spirit soar.

Thank you, Heather (click on the link to her blog to read about what gave her the idea to do the video, which involves a little connection I have with her daughter Elsie Jane), Lisa (from Smacksy), Maggie (from Maggie, Dammit), Eileen (from Calandro Clan), Becky (from The Tales of Married Mikkimoto), Ann (from Ann's Rants), Jessica Bern (from Bern This), and Lee (from so many things I linked to her Twitter account).  And, as I understand it, Lee's fabulous husband for his editing talents.

Consider Operation Spiritual Airlift to be a roaring success - just when my spirit was about as low as it has been through this whole journey, there you guys were.  JUST EXACTLY when I needed you.

Words fall so short for how much you all mean to me, but I did manage to take this pic from the hospital yesterday -- that smile on my face?  You put it there:

Wednesday, January 25, 2012

Love, Fear, Courage and Faith - What Cancer Does to a Family

I never intended this to become a cancer blog, any more than I intended it to become a recovery blog when I first started it to be a jewelry blog four years ago.

It won't always be a cancer blog, but cancer - like active alcoholism - is a totally absorbing, all consuming thing.  Everything in my world - literally everything - revolves around having cancer.  The kids' schedules, my husband's schedule, my schedule - nothing can be set in stone until my treatment logistics are pinned down.

And that's just the practical part of having cancer.

The emotional part is the real all consuming thing - for all of us.  The kids having to make adjustments to my weakened state, learning to be more self-sufficient, being brave about new sitters and going on play dates at school friends' houses they have never been to before.  Getting rides from Mommy friends of mine that they know, but haven't driven with before.  Any one of these things would have been a big deal Before Cancer.   After Cancer they are learning to adjust on the fly, because they don't really have a choice.  I am so proud of both of them, bravely extending their horizons, stepping almost daily outside of their comfort zones, managing their fear of my illness along with all these new things.

My husband is working so hard - both at his job and here at home - he is parenting the kids most of the time, and being a care-taker for me, all while managing the regular day-to-day business of full time job.   He amazes me every day at the patience he shows the kids, even when I know he is stretched to his limits.  He asks me over and over, what do you need?  What can I get you?   He is a strong shoulder for me to cry on when I need to, even as he tucks his own worries away he strokes my back and tells me everything will be okay. He looks out for ways to make my life easier - a laptop table next to my bed, cleaning out cabinets to make things more accessible, finding just the right thing to cheer me up.

Cancer impacts the whole family, on every level.

I struggle to come up with things to write about that aren't cancer related -- but those thing don't exist in my world at the moment.  My thoughts are consumed with managing symptoms, pain, sleep, medications and trying to keep fear at a healthy arms' length away.

I have been stripped down, emotionally, to an almost child-like state.

I think back to where I was a year ago - preparing to fly to the Blissdom Conference in Nashville, meet up with friends, speak on a panel, network and try to spread the word about Crying Out Now.  I had recently met my weight loss goal of 65 lbs, and was generally feeling on top of the world.

These days there is no room for dreams, for ego, for thinking about building my business or networking.  Those days will come again, I believe, but at the moment they feel long gone.

These days it is all about "what did you eat today, hon? Anything?"  "How is the pain?" "When did you last take such-and-such medicine?"

And then my least favorite: "Have you, you know, gone today yet?" (like with children, bowel movements, or lack thereof, are a hot topic.  Sorry if that is over sharing, but the doctors are concerned and I'm concerned, so the whole family is involved in finding foods that will help Momma GO.)

So maybe I'm more like a potty-training toddler.

My thoughts are so centered around me, not in an egotistical way at all, it's just there isn't room for anything else.  I go into the kids' bedrooms at night to kiss their foreheads while they sleep and my heart aches; there is so much I don't know about their day-to-day life right now.  Their worlds are held safely in the hands of my Mom, my friends, and sitters.

I'm still grappling with fear, too, although it is so much better than it was.  Stripping my life down to its barest essentials meant that a lot of my former day-to-day fears were stripped away, too. They almost make me laugh, the things that I worried about Before Cancer. Things like not measuring up, trying to fit in, neuroses about why so-and-so seems upset with me, or so-and-so hasn't called in while.  Those petty concerns about keeping up with the other Moms, being successful in business and raising kids - doing it all, and doing it all well - they seem very, very far away.

These days I live in a nearly constant state of deprivation.

I can't eat, I can't drive anymore, I can't talk easily on the phone (or at all, because of the pain), I don't have the energy to do much of anything.  Deprivation does funny things to your mind. First it drove me nearly insane, as I struggled against it. I fantasized about my old life: about exercising, about biting into a cheeseburger, about going to the grocery store and piling food into my cart, about meeting up with friends for breakfast, or a night out.

Slowly, slowly, I am adjusting to my new normal, and now I don't think much about those things anymore. There isn't any point; it only brings misery.  I have tucked myself into my little nest of a world, and I'm waiting it out.  I know there are things - important life lessons - I will learn through this experience, especially coming on the heels of another tough life change: losing my Dad so suddenly in June.  I had barely begun to process his death when the cancer came along.  I've decided to put all the Major Life Lessons on a shelf, though, for a while. I don't have to figure this all out now. I just have to put one foot in front of the other, keep my heart and mind as open as I can, and get from one end of the day to the other.

And then I have to get up and do it again the next day.  But I'll think about that tomorrow.

And, of course, my "what if I get cancer someday" obsession -- a fear I carried with me my whole life like a nasty, heavy piece of baggage -- now that it's part of my daily world, it isn't nearly as scary as I imagined as I cultivated my fear-fueled obsession with disease.  Because we adapt, we do, in astonishing ways.

There is an issue with the lump on my neck; the one that holds the tumor inside. Last week it got bigger, and then a LOT bigger, and the doctors and nurses tried to downplay it, but I speak fluent non-verbal communication among doctors and nurses now and I knew they were concerned.  There was talk of doing a CT Scan to see what is up, but that wouldn't change the treatment protocol at all, so it was decided to stay the course.  And the lump is getting smaller again, slowly.  Hopefully it will continue in this direction.  The doctor yesterday basically (again, in doctor-speak) prepared me for the idea that I will very likely need surgery to remove the lump after chemo and radiation are done.

"And if we find there are active cancer cells in the lump after we remove it?" I asked.  I am not afraid of answers anymore. I do not stick my head in the sand.  I want to know. Sometimes I don't even recognize myself when I hear myself speak to doctors

"Well, then we celebrate that we took it out and didn't wait to see if it would shrink," was his guarded reply.

I decided not to press it, because I know he doesn't have a crystal ball, he doesn't know why tumors behave the way they do.   He did tell me he had one other case like this, where the tumor just wouldn't shrink, but when they removed it after treatment was done it was just "rubble" - no cancer.

Steve heard "rubble"; I heard "only one other case."   So the fear thing is a work in progress, but I've come a long way.

Tomorrow (thankfully) the feeding tube goes in - I don't know if it will be overnight procedure or not, but they will have to put me under general anesthesia to place it in.  My throat is too far gone for me to be awake, even under conscious sedation.

I am hoping the feeding tube helps me get some strength back - I'm lucky if I get 800 calories (all liquids like Ensure or Carnation Instant Breakfast) into me during the day.  I should be having, in my compromised state, closer to 1800 calories.  So I hope the tube helps with the healing and the energy.

The kids are calling it my "belly button straw", which makes me laugh even as I dread having one at all.

This print can be found in the Etsy shop RococcoLA
I wasn't paid or compensated in any way to promote it. I just love it.
Thank you for being here, reading.  Your comments and support help me SO MUCH.  Being able to write through this has been healing for me.  As hard as they are, I want to remember these cancer days, too, because there are so many moments of breathless beauty and bravery, and I want to capture those, along with the pain and the fear.

It's bringing my family closer, even as I feel like I'm drifting away. Writing helps me not lose sight of how my kids, my husband, my Mom, and my friends - OH my friends - are carrying me when I don't always feel like carrying myself.

So thank you.  Thank you so very much.

Friday, January 20, 2012

Halfway There

I am halfway through.

While I am grateful for this milestone, the halfway mark appears to have brought with it the kind of pain that the doctors and my fellow tonsil cancer survivors have been talking about.

It didn't build gradually, getting a little worse each day. Somehow, the pain slammed in the back door yesterday afternoon, after my radiation treatment, put its feet up and has made itself at home.

It settles over all my emotions, thoughts and words.  It cloaks everything in a kind of prickly haze. It makes me squint my eyes, like I'm looking into the bright sun.  The kids' images and voices come to me through the pain, as if from afar.  I nod and try to smile; I don't want them to know how much I hurt.

Talking is impossible today.  Some days are worse than others, and I'm hoping today is just a bad day and that I will have a good day, soon.

The medication helps some, but there is only so much it can do on days like today.

My world is becoming so small, like a pinprick.  I don't go anywhere anymore; I'm not driving.  I can't speak on the phone comfortably.   My universe revolves around getting to treatment and back.  I walk wide-eyed through the halls of the hospital, marveling at the pace of everything, mutely taking it all in.

I don't feel well enough to read, even.   I think the only reason I can write is that it soothes me, like a balm on a fiery burn.  Writing about the pain makes me feel at arm's length from its bite, at least for a while.

Cancer treatment is such a bizarre thing.  I read a quote that said something like:  "treating cancer is like trying to rid a dog of  fleas by beating it with a stick".    Every day cancer patients willingly, even eagerly, submit to more pain and discomfort, because we know the pain is chasing away the disease.

But on days like today I wonder how on earth I'm going to get radiated 16 more times.

The other odd thing about the pain is that tomorrow I could wake up and it will be lighter, like a fog dissipating in the bright sun.  There doesn't seem to be any rhyme or reason to it.  It comes and goes as it pleases.

I just realized this is my third post in a row about pain.  Clearly, it dominates my little world at the moment, but it isn't the only thing.

There are moments of such tenderness, too.  Yesterday, I was lying on my side on the couch, spent and exhausted, trying to summon enough energy to go upstairs.  Finn walked up to me and started rubbing my back, ever so gently, and asked, "Does this help, Momma?  Does this make you feel bettah?"  When I told him it did, the smile that burst forth on his face was priceless.

It's hard for the kids to see me sick, but it is bringing out the caregivers in them, teaching them that they can make a difference - a big one - to someone who is suffering.

And after one of the longer, harder afternoons I've had so far, last night there was another message from Greta waiting for me in my Prayer Box:

Wednesday, January 18, 2012

The Proverbial Goalpost - Pain Medication, Recovery and Cancer

Do you remember an old episode of "Desperate Housewives" where one of the housewives (I haven't watched the show in ages, so I don't remember which one - or her character's name) gets into her son's Ritalin and goes on a speed bender?  She gets all productive, can't sleep but is accomplishing so much she doesn't care or notice.

The scene I remember in particular is one where the other housewives find her at dawn on a foggy morning, clutching the goal post at her son's soccer field, rocking like a baby and muttering to herself because she finally crashed.

I keep thinking of this episode, because the steroids they give me when I receive chemo every Tuesday (to prevent an allergic reaction to one of the chemicals) have this effect on me.   I come home from chemo all charged up, feeling awake and alert and ready to be productive.  I can't usually sleep on Tuesday nights because of it, but I give in to it and use the time to do quiet (but productive) activities like making jewelry or responding to emails (last night found me up at 2am, wrapped in a blanket and sipping tea and working my way through my Inbox).

After about five hours of sleep, I popped out of bed this morning at 7am like a whirling dervish (I felt like that Kelly Ripa commercial where she whips clothes out of the dryer and they fall effortlessly onto her kids).  After the kids got on the bus I made overdue phone calls, vacuumed the first floor, folded laundry and picked up most of the rooms in the house.  All before 10am.   My husband joked that we don't need a cleaning service - we just need to feed me a couple of steroids every other Tuesday and set me loose.

The crash comes, though, by tonight, and I'm back to the bone-tired weariness and lots of sleeping.

All of this is a steroid-induced preamble to my point, which is that I've received lots of emails from people in recovery asking how I'm handling pain medication during the course of my treatment.

The answer is simple: carefully, and with respect.  I respect that the pain is real, that I need to take medication for it, and that I need to follow the doctor's advice.  I'm very vocal with all the doctors and nurses about my history of alcoholism (and I clarify that even though my history doesn't involve drug addiction that doesn't mean I don't need to be as careful with drugs as any addict would be).   I don't necessarily take a first recommendation at face value; I always ask about other options, addictive qualities of medications and whether natural options are available that would work just as well as what the doctors are suggesting (this was true in the earlier part of my treatment - Melatonin for sleep is an example).

I examined all my pain medication options, and chose the one that seemed the best for me, that had the least likelihood of becoming habit forming for me over the course of my treatment.  In my case, at this point, it's a patch that I wear that dispenses medication slowly and is replaced every three days.  I like that it doesn't involve my discretion on when to take it, or how much to take, and so far it isn't producing unpleasant side effects or cravings.

I may need to take more, heavier dosage pain medication as my treatment progresses, and at every step I will be careful and respectful. I am talking to people in recovery about it, too, getting advice from all sides.

Some people in recovery feel strongly about the topic of pain medication (mainly that it should be avoided if at all possible, and some even consider it a relapse), and I listen to what they have to say, but I will choose the course that is right for me, my treatment and my pain.  I've been around the recovery world long enough to know that if you ask 100 people the same question, you will get 100 different answers, and some of them will be very opinionated.   The trick is to listen with an open mind and heart, but to always balance advice with what is right for me, and then to run what I think is right for me past my inner circle of recovery- my most trusted friends - who will tell me if I'm lying to myself.

The Desperate Housewives image - as funny as it is - is also a reminder to be careful.

As a woman in recovery I don't like feeling out of it anymore. I don't like the feeling that I'm looking at the world through a fog.  Thankfully, so far that isn't happening, and with the exception of the steroids I haven't noticed any appreciable side effects from any of the medication I'm taking.

As difficult as this is - this whole journey through cancer - I want to be present for it, feel the emotions, work through the tough stuff.  When I come out on the other side I want to have grown.

If I were still drinking, there would be no growth.  If I were drinking, cancer would be a Grade A, World Class excuse to drink, no matter how bad it would be for my body and my treatment.

There are moments when I want to escape - to pull some secret trapdoor and just drop out of my life for a while.  When I get like this, I start talking, because I know it's the first step towards wanting to be out of it altogether.

For now, though, I will enjoy my bursts of productivity, while keeping a wary eye out for the proverbial goalpost.

Sunday, January 15, 2012

Spiritual Airlifts

I feel like I'm surfacing from the bottom of a shallow pool - not from the bottom of a deep lake or pond or something, because I've been right there beneath the surface of the water, able to see and hear all that is going on around me, but unable to be part of much of anything.

I can see you out there, shimmering away in your busy, busy world, running from one thing to the next, chatting on phones, tapping away on your devices.  I don't feel part of that world anymore, but it's okay.  Just the thought of rushing anywhere makes me too tired

There is a freedom in this kind of tired.

When I was kind-of-sort-of-tired-but-not-totally-tired I was way more frustrated; I had that nose-pressed-against-the-glass feeling, like I should be out there participating but just can't.   Now that I'm full-on-bone-weary-tired I'm happy to let go, to lie down and rest.  I don't have the energy for anything else, anyway.

I'm about halfway (well, almost halfway) through treatment, and the honeymoon phase of this is over.  The reality of what I'm up against plunked into my lap last week, wiggled around, and made itself comfortable.

I am no longer driving myself to treatment, because it's too tiring to sit up that long.  My appetite has all but disappeared, and I can't taste anything anymore.  Except for COFFEE.  I can still taste coffee - thank God for small miracles.  I'm down about 16 lbs in two weeks.   The ulcers/sores in my mouth make it impossible to eat anything solid (although in a fit of desperation and determination last night I sent Steve out for a cheeseburger from McDonald's and damned if I didn't nibble that thing half to death) so I'm on a liquid diet.

The feeding tube will go in this week, and now I'm actually looking forward to it.  My body craves nutrition.

I spend most of my time sleeping, or reading.   I don't get on the computer much these days, and I'm way behind in responding to emails.  If you sent me an email in the past week and haven't heard back - I'm sorry. I'm here, shimmering beneath my pool of water - and I'll slowly work my way through them.

I didn't set out to give a laundry list of all my symptoms and struggles, though.  Although it does feel good to get them off my chest.  And maybe it will make what I really wanted to talk about more powerful, because what I wanted to talk about was how overwhelmed and amazed I am at the generosity that surrounds our family.  It is hard to admit that you need help - at least it is for me - and I balked at the idea of needing people for the first couple of weeks.   I'm over that, now.  We need you, and we are so very grateful for all your help.

To all of you who bring meals to our front door step - THANK YOU.  I'm usually coming home from radiation around 6pm, dog tired and weary, and to walk in and see my family sitting around the table eating a nutritious meal means so much to me.  The mommy-guilt part of being sick is tough  - all the things I can no longer do -and your delicious meals do more than feed my family - they feed my spirit.

Thank you for all the cards, notes and emails.  I read them all, sometimes again and again.  I can't respond to every one of them, but they matter to me.  They matter a lot.

Thank you for the Amazon gift card - so many of you contributed to keep me up to my ears in books (and apps!) for my Kindle.  Thank you for the Grocery Delivery gift card - we used some of it this week and it was a life-saver during a particularly difficult time.

Thank you to my incredible Mom, who is steadfastly by my side during treatment, keeping me company, coming to my house to watch the kids so Steve and I can sneak off to a movie.  The other night she came armed with her favorite recipes and putting them in my blender.  She knew it was difficult for me to to smell the delicious meals coming into my house and not be able to taste/eat them - so she blended them, one by one, into delicious soups.  They are so good; even the kids like to eat them.

All of your generosity keeps my little family trucking along, keeps their lives as normal as possible during this less-than-normal time.

My friend Sean, and his lovely wife, Sue, came by a few weeks ago with a Prayer/Hope Box.  I have known Sean for over fifteen years now - we worked together back in the 90s and have remained friends ever since.  Sean and Sue have been through their share of health struggles, and their unwavering faith has always been inspirational to me.

It's a pretty bejeweled cigar box, and inside they filled it with inspirational Scripture and Psalms. I take them out and read them when I need a boost, when I'm feeling at the end of my rope and my own faith is wearing thin.  This morning, I pulled this from the box:

Be strong and courageous;
do not be frightened or dismayed, 
for the Lord your God is with you
wherever you go
 Joshua 1:9   

Sean encouraged Steve and the kids to put messages/pictures in the box, too.  When his wife was ill, he would put tickets to things they would do together when she felt better, along with messages of how much he loved her.  

The box sat on my bedside table, forgotten by everyone but me, I thought.  

The other night I had a bad reaction to some medication and was throwing up for most of an evening.  The kids were still up, and Steve got them into bed as I was retching in the bathroom.

When I finally stopped dry heaving and made my way - slowly - into my bedroom, I saw the Prayer Box sitting on my pillow. 

With tears in my eyes, I opened the lid, and saw this: 

A note from Greta that says: "Cancer has the word 'can' in it."

She knew I was having a rough night, and she remembered the Prayer Box and added this note all on her own.  She was still awake, so I tiptoed into her room and gave her a big hug.  

"Thank you," I said. "Your note was just what I needed.  I feel so much better."

She beamed.  "I'm sorry you're sick, Momma," she said. "But I know you can do it."

And I can; with all of you to help me along - all your prayers, generosity, words of support, encouragement and advice.

I can.   

Wednesday, January 11, 2012

People-Pleaser In Pain

I have two weekly consultations with the oncology and radiation team.  They always start by asking me about pain.  How much I'm in, how often, etc.

I don't know how to answer this question.  And it brings out all my people pleasing tendencies.

"Well, how much pain should I be in?" I'll ask.

The nurse just raises her eyebrows at me, as if to say "are we really going to go through this charade again?"

I mean, something I consider major pain may be no great shakes to someone else. I don't want to come across like a wimp, for crying out loud.  But I don't want to answer too high, because I did that once and everyone started running around aflutter and calling in more specialists to stare down my throat.  I didn't like that, so I want to answer in such a way that lets them know I am in pain, but I just don't know how much without knowing how other people at this stage in treatment answer the question.

That's the way us people-pleasers roll.

So they bring out the chart.  You know - this one, with the faces:

I don't know what that bottom row is all about.  Maybe people with oval shaped faces experience pain differently than us round-faced folks.

I stare and stare at the chart, wanting so badly to pick the right answer.

But seriously?  I can experience all those emotions in like five minutes when I'm PMSing.   And that fourth round face from the left?  That's how I look when I lose my car keys (which is an experience that can be quite painful, when you think about it).   Number three round face from the left is how I look when I'm day dreaming about Spencer from iCarly.  Or chocolate.

Number eight of the oval faces is how I look when I stub my toe.  And Number Ten Oval-Face is how I look when my kid asks me his one-millionth question in five minutes.

The chart is no help to me, so I give comparatives, which frustrates the nurses to no end.

"Well, today it hurts less than slamming my finger in the car door, but more than a swift kick to the shins.  Can you write that down?"

She sighs, and writes something down, but I think it has more to do with my mental health than any pain scale.

Someday I'd really like to get a peek at the notes in those charts.

"So," she sighs, "is it accurate to say you are in some pain, that it is increasing week to week, but that it's manageable right now?"

"Ummmm.  Sure."  I answer, noncommittally.

"How about this," she says.  "When the pain starts keeping you up at night, or is preventing you from eating food, will you let us know?"

"Oh, I haven't been able to eat food without pain for a while now, " I say.  "And sometimes I am up at night from pain, now that you mention it."

She rolls her eyes again, sighs, and leaves to get the doctor.

"But really - it's not that bad!" I shout after her, wanting her to be proud of me, or like me, or something.

Sunday, January 8, 2012

The View From Here

 I love our master bedroom.

One whole wall is floor-to-ceiling windows, with a pretty french door that leads to a second level deck. The arc of the sun at this time of year makes it the brightest room in the house.

The walls are the palest blue, and the trim is bright white.  It has a Caribbean bungalow feeling, and it has always been a space that brings me peace.

This sanctuary will be where I fight this cancer fight.  The physical symptoms of radiation and chemotherapy are kicking in, bringing with them the mental part of this battle.

Up until mid-week last week, I felt pretty good. My throat was getting more sore - both from the radiation and from an outbreak of thrush brought on by the steroids - but my energy was good, I was sleeping better, and able to eat most soft foods.

This has changed, and quickly.  The thrush has gotten worse, making any type of solid food nearly impossible.  Even liquid shakes burn on the way down.  I have been given a numbing solution - something I can drink before I try to eat that numbs my palate and throat - and I have to sip this continuously to get any food down at all.

The radiation causes chronic dry mouth, which means I wake up frequently during the night totally parched and needing to sip water.

And I'm tired.  Yesterday Steve and I went to an afternoon movie as a date, and it totally wiped me out.  It's a bone-tired weariness, like I have the flu.  Except it's cancer. And I'm not even a third of the way through.  It's only going to get tougher.

I spend most of my time in my Caribbean sanctuary, sleeping, reading and playing hours of Mah Jong on my Kindle Fire.   Except for when I have to get to the city for treatment every afternoon, I am mostly resting.

There are bright moments, for sure.  This morning the kids piled into bed with me, bubbling with stories and questions and snuggles.   We lolled around in bed, a tangle of limbs, for over an hour.

Finn gave me a squeeze, told me he loved me and that he's glad that I have "the lucky cancer" and that I will be okay.

Tears sprung to my eyes as I gave him a bear hug and told him I'm glad I have the lucky cancer, too.

I have come to terms with the fact that the feeding tube needs to go in this week.  I am hungry all the time, but because I can't eat much the weight is coming off fast.

It's like a triathlon - each leg of the race brings new challenges.  And to train for my race I have to keep surrendering, keep letting go.  Instead of running harder, my training regimen is to flop back and lie still. Staying in bed most of the day is harder for me than running a half-marathon would be.

So I sit in my sun splashed room - me and my lucky cancer - and I breathe through the tough moments.  I try not to think about bacon double-cheeseburgers while I sip my protein shake.  I try not to cry as Steve and the kids head out for a nature walk on a beautiful January morning and I settle in for a nap.

I try not to feel sorry for myself.  But sometimes I do.

And sometimes I feel like the luckiest cancer patient in the world.  Especially at the infusion center, where I receive chemotherapy treatments once a week, and I see what unlucky cancer looks like.

I don't like writing about the tougher bits; it feels like complaining, or like I'm begging for sympathy.

It's neither.

It is simply my truth of the moment from my Caribbean sanctuary on a sunny Sunday afternoon.

Friday, January 6, 2012

A Warrior's Sense of Peace

"Things are always in transition, if we could only realize it. Nothing ever sums itself up in the way we like to dream about.  The off-center, in-between state is an ideal situation, a situation in which we don't get caught and we can open our hearts and minds beyond limit. It's a very tender, non aggressive, open-ended state of affairs."
                 ~Pema Chodron, When Things Fall Apart: Heart Advice for Difficult Times

One of the reasons I adore Pema Chodron's teachings/writings, is that she shines such an honest, gentle, light on the darker shadows of the mind.

I have been feeling disjointed - disassembled - as though the old me (or my perception of the old me, at least) was being deconstructed one bit at a time, just as my tumor is destroyed, little by little, piece by piece.

My external and internal worlds are getting smaller, simpler. And Pema Chodron is right - this off-center place is where I can open my heart and mind beyond their usual, well trodden paths.  There is a tenderness to it, too, because my horizon has suddenly been pulled right up close, like a sheet tucked under my chin.

Until I got sick, I don't think I fully understood my Ego's desire to fly from the mundane.

I don't get up in the morning with a head full of ideas anymore - for writing, or jewelry or adventure. My mind was often like a house-afire .. always groping and searching for the Next Big Thing. Anything to save me from Tuesday, from the dull, repetitive thump of my days.

I wanted to feel something extraordinary, or do something extraordinary, every single day.  Maybe it was to write that piece that would finally set the internet on fire, or have a creative idea that would launch my business into the stratosphere, or find more ways to spread the word about women and addiction - bigger platforms, louder megaphones, more ears listening.

Next, Bigger, More - those concepts drove me much more than I realized.  I hardly ever just woke up, stretched, and said, "why, hello, Tuesday".

These days my thoughts revolve around medication schedules, traffic patterns to get to radiation on time, side effect management, what I will (or won't) be able to swallow today.  I experiment with soft foods - banana yogurt is a hit!, chocolate pudding is not! - and gently move myself from one end of the day to the other.

I spend a lot of time waiting.  In my car in traffic, in waiting rooms, in exam rooms.  I've gotten really good at it.  I sit in the Radiation waiting room and study the increasingly familiar faces there. Sometimes we exchange a smile or a nod, as we sit in our polka-dotted johnnies and socks.  We keep a respectful silence; this is not a place to exchange symptoms, side effects or diagnoses.  It is a place to simply be.

Simple tasks like folding laundry bring me pleasure.  The fresh, clean scents, the making of a messy pile into something orderly - I am noticing the simple pleasure in these things, and they are a balm to my darker thoughts.

I am finding the extraordinary in the small places - brushing my daughter's hair in the morning, helping Finn sound out a word, teaching them a card game.  I know they were here all along, these moments, and sometimes I would see them, if I stopped long enough on my mad rush to the Next Big Thing.

But now they feel like little gifts, these moments, not something to get over with quickly.

And when the darker thoughts come - and they do come - I am learning to open my arms and embrace them, because I can never, ever outrun them. It's futile to try.
"To stay with that shakiness - to stay with a broken heart, with a rumbling stomach, with the feeling of hopelessness and wanting to get revenge - that is the path of true awakening.  Sticking with that uncertainty, getting the knack of relaxing in the midst of chaos, learning not to panic - this is the spiritual path."
                 ~Pema Chodron, When Things Fall Apart: Heart Advice for Difficult Times

Although nothing about my life feels familiar at the moment, being ill is bringing me closer to my center.  It is forcing me to walk through boundaries, through walls that I thought protected me from fear and vulnerability, but really only separated me from true peace of mind.

As I slash and whack my way towards truth, shed light on dark corners of my mind that I never thought I'd have to visit (hello, Cancer Patient; hello, Pride; hello, Avoidance; hello, Fear) I am getting closer to a true sense of self, a warrior's sense of peace.

Tuesday, January 3, 2012

No Hopeful Flourish In This Post. Otherwise Known As Progress.

The steroids they give me to prevent an adverse reaction to one of my chemo cocktails gives me so much energy that I finally know what it feels like to be Type A+++.  I don't know if I should be jealous or offer condolences.

It's 11:30pm and I'm nowhere near sleep.

I lie in bed and stare at the ceiling, listening to the petulant little five year old who stomps up and down the hallways of my brain braying thoughts like a deranged donkey.  She won't leave me alone. Writing sometimes quiets her, so I'm giving it a try.

Today was a double-whammy day; both chemo and radiation treatments mean a full day at the hospital.   I had blood work, a consult with the chemo nurse, radiation treatment, then back up to the oncology department for the chemo administration, which takes about three to three and a half hours.

Long days like this mean that our fabulous new sitter, I'll call her Laura, will be stepping in to be me for the day.   She will meet Finn off the bus, be there when Greta gets home from a play date, help with homework, take Finn  to karate, feed snacks and start dinner.  She is a true God-send, more than capable, and the kids (and Steve and I) adore her.  It will be a dark day in this household when she goes back to college later this month.

As I'm snapped into the immobilization mask, preparing for my 7th radiation treatment, I glance at the clock, and realize they are probably getting Finn into his karate uniform and getting ready to head off to class.  I lie there, pinned to the table like a science experiment, and let little sad waves flow over me.

Treatment is forcing me to let go in so many ways.  Sometimes I go gracefully.  Other times, not so much.

Did Greta have fun at her play date today? Did she start her homework?  How was the first day back from vacation?   My minds spins as the radiation beams hum and hiss in my ear. I treasure the first moments home; that's when I get most of my tidbits of information.  By the time I drag myself in the door at close to 8pm I barely have time for a hello before it's their bedtime.

They are totally okay; Laura is cool and fun, but firmly in charge. I can tell they get a rush being with her. I'm  happy for them - for us -  but my heart still breaks a little.

Damn cancer.

Bedtime arrives, at least on paper - I'm not tired at all - but I dutifully climb into bed and wait for sleep.  My legs feel jangly, odd.  My thoughts refuse to stay in the moment, pinging far ahead into scary, unchartered waters. Then the pendulum swings back to the weekend.  I fought and railed against my dual diseases- alcoholism and cancer - for most of this past weekend.  I was ungainly, volatile, jealous, resentful, victimized.  I was angry.  You'd never know it to look at me in public, but behind closed doors I was not a pretty sight.

I'm terrible at falling apart, because I let it go too long before I realize I'm over the edge.  Then it's all snotty-cries and bubbling resentment and self-pity.

Eventually, I beat myself up enough and ask for help. But not before paying a price with my sanity, with the balance in my family, with a little piece of my soul.  I'm like an ogre, and I know it, and I can't get out of my own way.

I finally, stubbornly, reluctantly and with more than a little shame, reached out and got the help I needed.  I went to a meeting, and spent a lot of time on my knees in my room surrendering over and over and over.

Today, the clouds parted a bit.  Today I feel emotionally shaky, but in touch with what's really going on inside me.  Today the gratitude is back, weakly waving her hand and whispering, "remember me?"

I have to remember, though, this is just today. Twenty-four hours.  Tomorrow I have to get up and do it again - surrender, ask for help, touch the truth, give the ogre - I dunno - a hug?  A primal scream?  I don't think she's going away anywhere soon, and I have a lot of work to do.

It's hard for me to write here about the ugliness. Not because I want to appear perfect - not even close. It's because the ugliness scares me so much I don't really even have access to it.  I prefer to live in gratitude, serenity and peace. It's so much nicer there.  But the ugliness is there, simmering beneath the surface, and if I don't respect it, talk about it - even acknowledge it - it corrodes my spirit, my sanity and my sobriety.

The ugliness makes me feel very, very vulnerable. And vulnerable is hard.