Wednesday, November 26, 2014

Life Changing Moments

I spent some time in the Central Valley.  A place we all know of, but few visit.  It is where our food comes from. Lots of our food.  Every square inch of the valley is producing lots and lots of food.  Who knew grapes were left on the vine to dry and become raisins?  They cut the canes and let them sit for a while and shrivel.  Love seeing "3 avocados for $1.25".  Oranges on the trees, yards with fruit trees, all orange and yummy this time of year.  Need some lemons, walk around the block and help a tree be unburdened a bit.

The Valley is flat and stretches for miles.  It is dusty and windy but a bit of rain fell.  When the wind shifts there is the odor of cows being raised too close together.  It is a lot like much of rural/agricultural America.  Lots of little towns, some, like Visalia have a real down town.  Walmart is there but kept on the edges.  It is California in some ways: In-n-Out Burger, Orange Trees, crazy drivers.  It is also sort of Southern Idaho: Big Pick-ups, large fields needing to be harvested, great Mexican Restaurants, the babble of Spanish.  

Look west and the Coastal Range is in view. Then, 50 miles East, the beginning of the Sierra Mountains.  They spring up from the Valley floor.  A bit of foothill action but when you start to climb, you climb fast.  Up, Up, 1000 feet, 2000, 3000, 5ooo.....Weird trees cover the sides of  the mountains. Some deciduous trees, mostly big pines and scrub of some sort. 

 Then there are the rocks, big rocks.  The kind that could down a Seattle ferry if it dropped on it.  Big.  Did I mention big.  Huge, massive

 rocks..... get my drift.  So You climb, you drive along and then you enter the valley through a very long, dug by hand tunnel.  This is what you see
It is simply magical. I don't know what to even say.  I have seen the pictures.  I simply was not prepared.  I got out of the car and I just sat there with a dropped jaw.  I was sort of like the first time I saw the Grand Canyon, the Leaning Tower, Devil's Tower, the Pacific Ocean, a whale, a hummingbird in the snow.  

We all talk about God and Creation and the Big Bang and the Universe. We are amazed how fast an e-mail can travel or simply the wonder of electricity.  But this. This place is a reminder that good and beautiful things take a long time.  They can not be rushed or pushed or even nudged along. 
This special place was made with the gift of time. First the mountains pushed way way up, the water brought them down and a valley was born.  The world turned cold, the glaciers filled the valley and then moved the rocks with them.  Left them as the glacier moved and worked and pushed into the central valley.    
I have no words, just a reminder that important things take time. A lesson I need to learn as we approach year three of the transplant. 

Tuesday, November 18, 2014

Digging Deep and Moving On

Trying to move on is sometimes problematic.  Something we learn very early on that no matter what, the world does not stop.  It keeps moving forward and we keep spinning. It is hard sometimes to step back onto the fast track if you have been hanging out in another dimension.  You know when you are part of the world but not really.  A bit out of step.  A time of exploration and eventual re-entry.  I am working hard on the re-entry part right now. 

No matter what, there is to be daily activity moving life forward. Another class, a long walk, a trip to the grocery store, a book to read, a bit of laundry. Job Applications,  The usual.  

All of Seattle has been in a deep freeze.  I am not sure how cold, I can only observe what the hummingbirds signal.  Each night the feeder freezes.  Each morning I put the warm feeder out at a bout 7 a.m.  I am greeted with a bitty bitty bird scolding me for not waking up earlier.  I try to explain to him that I am shocked he is already up.  I know when he tucks himself into a snuggly part of the pine tree, he goes into a kind of hibernation.  I suggested to him this morning, he might wait a few more minutes.  I have found that earlier delivery of the feeder causes freezing in the bitter cold. 

I guess he and I have a lot in common.  We don't like to wait.

Oh well.  Waiting is highly over-rated.  My daughter complains all the time that I should be patient.  I don't see why that is a virtue.  Okay, maybe it is but there is a huge difference between waiting and being passive.  I am just a little more Pro-active in my dotage. 

I will keep moving forward.  Trusting in the motion and the actions of what needs to be done.  I submit to the demands of those that hound me for sustenance
 and rejoice in the fact I can actually deliver a bit each day. 

Wednesday, November 12, 2014

So.... Now What?

I have never worked at being Debbie Downer.  I strive to make bad things good, find some sort of lining, even if it is not silver.  I take each moment and forward endless good energy into the universe.  I really try.  

But there are times and days it is so so hard.  Childhood Cancer death just seeps through the cracks.  Like the nano size dust during the Dust Bowl Days. 

No matter what we do, it is coming and there is often no stopping it. That is how cancer feels to families.  It just keeps coming.  Between deaths of children, young, and in their teens. Relapses and complications and fevers and endless endless diagnosis, it sometimes feels so frustrating.  

The Santa's are out for photo opportunities.  Families are planning Thanksgiving and Christmas events and New Year get aways.  In the shadows are those that are mourning the loss of it all.  Many for their child. Many for the loss of wonder and simple joy of childhood.  I know kids that have been sick as long as they remember.  It is all they remember.  It just makes me so so upset.

  I am tempted sometimes to just slam that door and try and forget that even though we are in a good spot for now.  We have no long term warranty.  Not that anyone does, we are just so much more aware of the lack of safety net.  

So tonight I go to the home of a great friend and we work out a way to make the Wishing Rock Project a real viable thing.  We keep delivering small bags of necessary items to those devastated by childhood cancer.  It think it comes under "it's the thought".  So many things impossible to solve. Sometimes it is enough to try and take care of just a tiny bit at a time. 

Below is a link to Jai Anderson's blog.  They are in the fight of their child's life.  ALL is awful.  AML is the worst.  

Saturday, November 08, 2014

Leaf Shuffling

I can't help but shuffle through the leaves when they are on the ground in the fall.  I have watched certifiable grown-ups deliberately take their feet and move them on the ground.... shshhhh, shshhhush the sound flies
 into the air.  A simple sound. A sound of fall. A sound that requires only a bit of extra energy and a few leaves.  Not much. 

Ballard, our neighborhood is not very shuffler friendly.  Trees with leaves are not usually welcome.  I have been told by many a person that if you have trees, the leaves fall. They must be raked, they must composted, they must be contained. 

But there is something about those moments when containment seems wrong.  I saw a mom show her toddler how to shuffle.  They went back and forth and back and forth.  I am not good at containing my leaves in a timely fashion.  Sometimes it is just a good thing to let them sit there, dry a bit, become crisp and noisy.  

Something about shuffling leaves and raking leaves and, in my day, burning leave... something organic and invigorating. Taking something simple, something to be discarded and making it a good thing.  

The leaves come, the leaves drop, the leaves are ferreted away.  What is reassuring is the tree, the searching roots, the reaching branches and the promise there will be new leaves in the spring. 

Right now things are going quiet.  We are going to head into real cold and darkness.  It is a time to recharge. To use the quiet to reflect on what has happened and to be introspective.  Quiet moments, quiet times.  

It is important to trust this time as a good time.  I am working on doing just that.... 

Sunday, November 02, 2014

Wishing Rock Project

So, How do I explain Wishing Rock to the group at Gonzaga that is going to put together a fabulous web site for us?

This project was born out of knowledge and experiences from ten years in what I call Cancer World.   I was not the primary ticket holder but the companion fare.  My daughter was diagnosed twice with Leukemia before her 20th birthday. As the Mom, I scrambled to manage all the the cancer stuff and regular life.  Sometimes it was easier than other times.

Because it is all about survival and we are survivors at heart and pretty good campers, we figured out some pretty important things.  Some from the first stint and lots from the second trip down the rabbit hole.  One thing we always had was our "hospital bags".  They contained our survival kits.  Certain cloths, a bag of toothpaste, good hair stuff, the usual.  But we also soon had a special small part of the bag devoted to Magic and Prayers. Sort of a charm pouch.

Special pictures, a bendy skeleton from a special roommate, a hospital approved candle, a Zuni fetish. A magic blanket, the right pillow.  Things to focus good energy.  I of course had a very good china cup that traveled with me.  I could not drink endless morning coffee in paper.  It was something we perfected over the many many moons of treatment and hospitalizations.  So we survived and we escaped but one if never truly free of Cancer World.  It live around the edges of our lives. 

So about a year ago I heard about three families with new diagnosis on Christmas Eve.  Hello, Merry Christmas, Your life is now changed forever.....  

It pulled at my heart in a way I had never experienced. I was compelled to do something for the families.  So I put together a bag.  

It has changed over the year but it has some things that are helpful and some that are "just because".  So the bags contain the following

A bag... a nice bag for hauling stuff, laundry, food, stuff.  Reusable.
A china mug for good coffee drinking
A Starbucks card because they have one at the hospital
A couple of tea bags because the nurses have instant hot water.
A magazine because no one can read anything more comprehensive
A small wind chimes.  We found they make the multiple pumps that beep all the time, much happier.
A nice bead from the Mom's.  There is a Beads of Courage program for the kids but the moms often need them too.
A Wishing Rock. (Wishing rocks represent a sudden and complete interruption in a life  But show that after the interruption, life can continue.  A blip of sorts. 
Mint gum.
Thank-you notes with stamps.
Some Mint Water if we can find it.

A little bag of magic.

I also include a letter with some practical advice like, Get someone to take out your garbage, do your laundry. Sweep up your front stoop.... I put the list in because people in crisis don't know what they need and at the beginning of the process everyone wants to help.  I have found that giving people meaningful jobs helps keep them around.   People want to help. They don't want to intrude but they have open giving hearts and need some positive direction. Someone who has had a child in Cancer World really understands.  It also has to be okay for people to ask for help.  That is so so hard.  We are generally good at giving but not very good at accepting or asking.  

so... We have a Facebook Page.  Wishing Rock Project.  We have some great initial contributors.  We have figured out the "how to get the stuff to the right people"  problem solved. 

Hey Gonzaga Class, thanks for helping us set up a web site.  I have the domain name in the bag.  We are a legitimate Washington State Non-Profit Corporation.  We have not yet filed for the Feds yet.  They want 400 dollars and a year or two of time to see if we are real. At some point we will make that leap.  Right now we are just chugging along. One bag of magic at a time. 

 Clearly it is needed. 

Friday, October 31, 2014

Fear and Loathing of Relapse

I have mentioned in the past the "R" words that live with those of us in Cancer World.  Remission.... our favorite.
Relapse or Re-Occurrence....... ones we fear and loathe. 

What we know is that sometimes remission does not happen.  In ALL ( Acute Lymphoblastic  Leukemia) world the kids are supposed to achieve remission after 7 days of treatment. Meb's was a bit more stubborn and but she was in remission by September 13, 2004.  A full course of treatment (high risk because of her age, her presentation and her failure to achieve remission in 7 days).  Life seemed to great.  Of course 7 years and two weeks after remission her cancer came back. Big time. 


Bam.... No real warning. No inkling that something was wrong. Nothing.  Kid looks great. She is in school, she is thriving,  she has this thing beat.  She is headed out into a new a wonderful universe.  Nothing will stop her.  

Wrong.  Oh we  were so wrong.  We had to do another circle of the moon and hope that by firing our reserve rockets we could make it back home.  We did. 

But the spaceship is pretty damaged. The occupants are weary and sometimes it is hard to face the world.  We know there is no guarantee things will stay in the correct trajectory. No way to know what tomorrow will bring. I'm not too sure when we will ever trust that there will many tomorrows.  

We do know that when it comes back, in any form, it does with the fury of the exploding sun.  We are reminded of this often. 

It is back for our dear little friend Allistiare. She had AML when Meb relapsed in 2011 and then she relapsed and then she did so again and then she had a very risky Bone Marrow transplant and now... Now something is back. Something is starting and they know how it will manifest itself. Just having it back, even in little bits they know it is bad.   They don't know if there are many options or where they are headed to figure this all out. 

I love these people, they are family in a special way.  Jai and I had many a cup of coffee during the long transplant months. Sten is great and stoic and a wonderful father.  He always smiles and stays in the moment with a calm I don't know how to master.

It has taken me almost a week to write about this most awful of relapses.  I thought if I didn't say something it would go away.  It would be a bad X-ray tech in Bozemen. It was just a mistake.  It can't happen to such a sweet child. 

As I have wrestled with all of this, cancer and cancer families and families being told to go home to hospice and children dying and this heavy cloud that closes in on me, I have come to a realization.   If there was a good thing to do to make it all better I would have figured it out.  If there was a bit of magic or some secret or special charm, in 10 years, I would have figured it out.  

There are no right words. No right actions. No right answers.  (Now granted there are lots of wrong ones but that is for another day.)  So the only thing I can do is listen. Ponder. Respond. React in a thoughtful way. Have lots of chocolate and Starbucks on hand.  

I can do that. 

Jai, Allistiare's mom is an amazing writer.  Here is the link to her blog.  I would suggest a glass of wine in-hand before you start.