Showing posts with label Leukemia. Show all posts
Showing posts with label Leukemia. Show all posts

Wednesday, July 2, 2014

25 Ways


July 1st, 1989, John and I got married.
It was a sunny day filled with family, friends and a lot of good music.

We knew nothing...
we were babies.

And now, flash, ka-bam, whoosh...25 years have gone by.

25 years.
Silver.

I read somewhere that Anne Lamott (whom I adore and admire) thinks that there are only three important prayers:

Although I love the simplicity, I'm not too sure about that...seems like God might be able to handle a little more depth there.

But in a marriage...that's where those three prayers just might be miraculous.

HELP!

So many ways, so many days, you have helped...
with the midnight barfing,
the conundrum of children's sports/activities and conflicting schedules,
the indoor/outdoor messes that just never end,
the endless garbage taking-out chore
(traded, in a moment of sheer brilliance on my part, for the endless bed-making chore)
with the big questions of life...

which leads me to THANK YOU!
For never missing a single chemo treatment for Patrick's 3+ year leukemia journey...
that alone makes you a complete bad ass.
For always having a smile or a joke or at the very least an inappropriate remark at 
the exact right moment.
For being able to see the bright side, even in the middle of darkness.
For being the ultimate DJ, always having a playlist and a song that IS the moment.
For being one hell of a dad, daddy or dobby depending on the day --
trust me, that devotion and irrational love is crazy sexy.
For taping your eye shut when my eye needed to be taped shut...full solidarity...in a terrible time...
that act of love is my inspiration to this day...
I want to love like you.

which morphs into WOW!
4 kids? 
really?
never would have believed it and yet, here they are...
what crazy, amazing gifts -- our very best dreams come true -- together.  
Out of the everywhere into the here.

Wow!

One dog, one rat, two bunnies, five cars, three different addresses, 
countless hours of late-night Christmas Eve put-togethers,
hundreds of barbecues,
silent nights,
loud, obnoxious mornings, 
25 years of
silly
scary,
sublime
slivers of time.

No one I'd rather spend it with...
my love.

Thank you for being my help, my thank you and my wow!
Thank you for 25 years...
how can that be?

Sunset selfie...June 2014.

Thursday, January 2, 2014

Salt Water



"The cure for anything is salt water: sweat, tears or the sea."
--Isak Dinesen

For the last few days, this has been my view.  That isn't enhanced.  It isn't altered in anyway.  It was taken with an Iphone and the glory was captured in miniature...but the beauty is so stunning, it comes shining through without effort.

I'm at the beach.

I was born in Pensacola, Florida.  
As far as I can tell, I spent only a couple of years there and then moved around to various locales in Iowa, Illinois and finally California with my family growing up.  I attended college in California's central valley and have lived pretty much right around there my entire adult life...but I've always had a tug, a strong one thats just keeps getting stronger, pulling me like a magnet, to the ocean.

I've always loved the ocean -- enjoyed our honeymoon in Bermuda -- but never could explain its magic.

It was calming, soothing, refreshing, invigorating, beautiful but most especially healing.

When Patrick was sick with leukemia, he had 60+ days of no detectable white blood cells.
He was not hospitalized but he was house bound.
He could be around no one.
He was isolated and by association so was I.

At first it was no big deal...I wandered around with Patrick in my car and would find empty parks.  Zip him out of his car seat, let him swing and play by himself, and hop back in.  Usually that effort would wear him out and he would nap, I'd listen to music and I would muse on the starvation of the soul without connection to others.

I became acutely aware of the poison of solitary confinement.

I related to castaways alone on an island.

I felt imprisoned when truly the only prison was in my mind.

And then I stumbled on an idea...I could take Patrick to the beach.
While the other two were in school, I would pack a picnic, drive an hour and a half and head to a lonely strip of sand with Patrick.
The sea gulls would be our welcoming committee.
The waves our hometown band.
The sand and shell collecting and castles and other creations would be our distraction from white blood cell counts and the language of leukemia.

It worked.

Like some sort of alternate universe, at the beach, we were healing and whole.
We were refreshed and vitalized.
Baptized in a way.
Over and over again.

Slowly, those 60 days chipped away...Patrick's counts got better and he could be with humanity again.
Most especially, preschool!

We've visited the beach in good health and in celebration many times since.

But, when my mom got diagnosed with lymphoma and didn't want to deal with the horrible news...I headed to the beach.  I put on my same T-shirt, made my same picnic lunch but this time I had a little companion named Caroline and she made the joy of the beach all her own.

I can't explain it's majesty.

I try to think of people who are land bound and have never seen the surf:  
never felt the waves tickle your toes, bury them and reveal them all in one fluid motion.  
I try to imagine never knowing this healing balm but I can't.

I like to think that my beach connection was created at birth, on that panhandle long ago.

All I know is that when I am here...like a marriage, in good times or in bad, in sickness or in health, for richer or poorer, the beach is my steady companion, constant and unyielding, always comforting.

Its rhythm, its cleansing presence, its energy is now a part of me.

I'm getting closer and closer to finding a way...demanding a way... to stay here for bigger and bigger chunks of time.

It will take sweat and tears, I am sure...other gifts of salt water...but I am willing.

My new year's resolution: find new beaches.

I can only smile at the opportunity of 2014 and share my grateful heart.
Life is rich with ordinary magic.
Find yours.



Friday, December 13, 2013

The Map

"There is something beautiful about all scars of whatever nature.  
A scar means the hurt is over, the wound is closed and healed -- done with."  
-- Harry Crews

I don't often see Patrick without his shirt on.  He's 14 years old and into privacy.  He takes his own shower, figures out his own clothes, always remembers his deodorant and out of my three children that can maneuver through this process on their own, he is the only one who routinely hangs his towel up.

So, it was with some surprise that I walked in on him looking at himself in the mirror, touching a rough spot on his chest, analyzing it and thinking about it.  At 14, like almost all the others, he cares about what he looks like.  He wants his hair to be cool.  
He loves to dress up with a tie and jacket.  
This stuff matters.

I could see him feeling his skin like a blind person reading Braille.  He wanted to know the story behind the scar.  
He didn't remember receiving it. But, I did.
The scar looks like a hashtag that might appear on Instagram.  It's faded but rough to the touch.
I touched it too...and like some sort of portal, I traveled back in time.

There on the center of his chest, right next to his breastbone was the entrance to what once held a Broviac. A Broviac (for the lucky people who have never needed to know that word) is a way of giving chemo directly into your body.  It also happens to be a way to take out blood as well.  Pediatric oncologists often suggest it as the best option for young children with cancer because of that blood-taking option -- fewer sticks with a needle then.  
But from my viewpoint, I'd tell anyone to go for option two...the port-a-cath.

John and I affectionately called the Broviac, the "X-files thingy" -- truly a scientific medical term if there ever was one.  The Broviac was a tube that hung out of your chest.  It required a tape over it and a netting to be worn like a vest over the entire chest so that it would not get pulled out.  It was next to impossible to bathe in.  It was hell to clean, not to mention life-threatening if we didn't clean it right.  At the end of each week, we needed to push Heparin into the Broviac and clean the area around it.  
There Patrick would sit, the most stoic three year old on the planet, letting us clean raw skin and push medicine.

All that is left of that awful, horrible time is the hashtag scar.

Tonight, I told him the story of his bravery and his poise.  I admitted that while I was afraid of it, he was not. 
He looked at me in a shy, proud way...

and he asked about the next scar.

This one was a three inch horizontal line about three inches down from his left hand collarbone.
That was where the Port-a-cath was placed.
After the x-files thingy came out...which was a Defcon 10 on my fear list, they casually replaced it with this.  This beautiful invention goes under the skin.  It's about the size of a fifty cent piece, circular, and attaches to a vein.  It has a sponge-y center where the medicine goes in.  You numb the area and then push the meds/chemo when needed.  But since it is under the skin and nothing needs cleaning, once the meds are done, you're done.  Free to go and live your life.  Go swimming -- no problem.  Take a bath -- a breeze.  Play in a water slide -- fine by me!  It was a miraculous transformation.  Patrick was four when he got the port-a-cath placed and we were a new family.
They "accessed the port" (don't we sound like we're in Star Wars?) whenever he had a chemo treatment, which was about once a month.  
Patrick was so zen and unafraid about the accessing that other children who were fearful would watch Patrick and see how easy it could be. 

He was fearless at four.
Pretty stunning way to live.
That scar tells that story and Patrick heard it tonight.

He asked if he had any other scars and I pointed out the tiny one on his neck.  It was part of the Broviac nightmare and truly I blocked it out.  I just embellished the other Broviac story and told him he was ready for his shower now...

except then I had to take my index finger and smooth his open heart surgery scar that runs right down the middle of his chest a good eight inches long and thick.  Like I had a bubble of glue under a paper craft, I smoothed that skin, petted that scar and reminded him of that amazing badge of courage.

That scar is hard to miss.  He knows that story so I mostly skimmed over it, like a favorite fairy tale.  
I could give the Cliff Note version.

He asked to see my scars.
I have only two.
One from a hernia operation when I was two -- a whisker thin three inch scar way down low on my tummy -- and one on my finger -- a Girl Scout camping accident with a sharp tin can.  
My stories show no bravery.  No zen-like calm.  No resilience.  No grace.

Like ports of call on a map, Patrick heard his story.  
The hero stood down a foe.  He maintained his cool.  
He bounced back from mortal adversaries and held his own.  
Mostly, he did it with effortless grace, good humor and kindness, fearlessly.

What's a little hashtag scar or two when you've done all that?

You're made of powerful stuff my boy.
I'm glad you finally heard it all out loud.

After all that horror, fear and dizzying sadness all that's left are the scars...and the stories.
They're both pretty beautiful now.

Monday, May 6, 2013

My Ugly Shoes

I have a friend named Beth who has a daughter that has been battling childhood cancer since last August.  She is finished with treatment but still fragile.  Any illness is a worry.  Any weird symptom takes her to that dark place.  Anything but her daughter being her bouncy, joyous self brings the shadows, the worry and the heartache.

I know it well.

May 16th, 2002, Patrick was diagnosed with Acute Lymphoblastic Leukemia.
August 2nd, 2005, he finished all treatment.
He is considered cured.

Yep. Miracles happen.
Smart people, devoted researchers, tender nurses, vigilant doctors change lives and create some sort of critical mass.  A deadly diagnosis just a few decades ago is now curable.
It's a hellish process but you get there.

Here he is:
Celebrating St. Patrick's Day 2013 at a pub with his dad and big brother.

He gets to live his life. Try new things.  Contemplate girls and dances and traveling and what high school will be like.  

He has a future...because somebody lost theirs.

I can't help but hold close all of the children who came before Patrick.  Those that tried new treatments, new tests, new therapies and got to the point that they'd try anything.
Those that knew they wouldn't make it and still they tried.

Not long ago, childhood leukemia was a death sentence.
For some types, it still is.
But the people at St. Jude's kept at it. 
They wouldn't give up.

St. Jude, the patron saint of lost causes, let them keep trying.
St. Jude's Hospital in Memphis, Tennessee, still takes the lost causes of children's illness.
They still work tirelessly on the most devastating diseases.
They work miracles everyday.

St. Jude's is special, very special.
I like to tell this story so that people can stop feeling just good about St. Jude's and can start to feel in awe.

There was an incredible research scientist that was from Australia.
There was no hospital in Australia that was like St. Jude's.  Nothing even close.
He decided to take all of his training and his passion and move back to Canberra to replicate St. Jude's over there.  
He got big donors.
He got amazing researchers together.
He built a state of the art research center for Australia.
For six years, he gave it a go.
It failed.

This doctor who gave all of himself over to this mission had this to say about it:
"There is no place like St. Jude for a scientist.  There is a terrific atmosphere in the highly interactive clinical and basic science programs, and the tremendous levels of funding make it all possible for me to do my research without interruption." 
--Dr. Peter Doherty, Nobel Laureate in Medicine, St. Jude Children's Research Hospital.

Dr. Doherty doesn't say it out loud but I will.  Something very holy and sacred is happening at St. Jude's.  Something that is intangible.  Something that can't be researched or itemized but something that everyone who has been there knows...a greater power is part of the solution there.

Patrick's amazing doctor, Dr. Jolly, did a three year fellowship at St. Jude's.  He knows.
We know.
Patrick benefited directly from that research and that sacred work.
He has his life today because someone dared to fight against the lost cause of leukemia.

Today my friend, Beth, posted this poem:

SHOES
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I don’t think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they’re glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I’m not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
-Author Unknown

I know those shoes well.  They've been at the back of my closet for awhile, but I still know them.
I wish I didn't.
However, I'm grateful today for all of the others who have worn those same shoes before me.
Those that took a chance and searched for the impossible.
I'm grateful to the mothers and fathers who had nowhere else to turn and were welcomed into St. Jude's.
I'm grateful to Danny Thomas for creating a powerful place of hope and care for the worst cases and the most desperately ill children in our country.
I'm grateful for miracles, most especially the one who shares my world. 

**If you want to say thanks, send a donation to St. Jude's.  Trust me, they will use your money well.**

Thursday, August 4, 2011

The Milestone...6 Years Later


Six years ago, a miracle occurred in the Foraker household: Patrick ended all treatment for Acute Lymphoblastic Leukemia on August 2, 2005.  That date was chosen by a computer.  Yes, our fate was sealed by a number crunching machine that decided that after three plus years of chemo, Patrick's body was ready to be done.  That would be the end mark to all chemo coursing through his body, all spinal taps to put chemo in his spinal fluid to attack the blood/brain barrier that so often carries a stealth cancer cell or two and creates brain cancer, all monthly doctor appointments and monthly (or weekly) blood draws.  It was the date for freedom and boy, did we wish for it, hope for it, pray for it.  It was the end of 1,172 days of treatment and anguish and fear.

Looking forward to that day, Jack and Mary Kate and of course John and I wanted to celebrate in a big way but we didn't know how.  We wanted to throw a gigantic party but got scared that we might be tempting fate and decided not to.  We wanted to sing and dance and live loud that day and we created all sorts of must-include songs on our imagined playlist.  The first: "Celebrate!" by Kool and the Gang.  If you don't know that song...here it is in all it's celebratory glory.  Enjoy!


But again, we got fearful thinking it might be too good to be true.  At the time,  Jack and Mary Kate loved to draw with chalk and so we created a fundraiser/celebration called "Chillin' with Chalk".  We held it in our town's Central Park.  We had buckets of chalk, invited our friends and asked for donations for anyone at the Farmer's Market who would like to have some chalk and decorate the park too.  We ended up raising about $500 and gave that entirely to Patrick's health team and told them to host a Victory Dinner for everyone involved in Patrick's care on our dime.  We gave them explicit instructions to go to their favorite restaurant and live it up.  And, we also gave each one of them a Life is Good T-shirt, our required uniform for anyone participating in Chillin' with Chalk.  Life is Good  

Auntie Claire created a beautiful chalk drawing of Patrick, Jack and Mary Kate.  Erin drew a sunshine.  Grandma and Papa drew a life-sized purple Barney.  Friends and family came a great distance to get their hands messy and write their messages from their hearts on a cement path in a park.  Those who were far away drew in chalk at their homes and posted their pictures to us on the computer.  I remember coming home dirty and tired, opening my email and seeing picture after picture of celebration from long distance. It was a day full of love and hope and yes, joyful tears.

We celebrated but in a careful way.  We wanted to be mindful that at any time things can change and the winds of our good fortune might blow the other way.  We were tentative to believe that this whole thing could have a happy ending.  

Guess what?  Here we are SIX years later!!! I actually didn't wake up on August 2, 2011 and think first of the date and its meaning.  I listened to Patrick and Caroline playing.  I put my daily to-do list in order in my mind.  I lived my regular old boring life and boy was it wonderful.  

I can never thank enough the doctors and nurses who played such a huge role in our lives for three years.    I can never thank enough the fundraisers who year after year work tirelessly to battle this ferocious foe.
I can never thank enough the tenacious cancer researchers who believe the impossible is possible and prove it over and over again.

If you want to find grace, it's in your ordinary day.  The gift of a regular old, nothing special, kind of boring day.  I had 1,172 days that weren't very typical...I'll take boring any day of the week.

Celebrate Life this Saturday at  the Davis Relay4Life for the American Cancer Society -- we will be there...walking, remembering, and celebrating the gift of ordinary days.