Monday, December 29, 2014

Transformations and Launchings

Our cells last at most seven years.  The earth is never still. Change is what life is about. If you are "I am against" change, your life is pretty difficult.  If you love to have "new" in your life, than change is a great thing.  

Most change is a slow process. We are don't really even notice it.  An extra pound, a perennial sending out a few shoots, hair going grey, a bit of light creeping back into the day. These are do-able changes.  It is the sudden that makes us all uncomfortable.  The death of a loved one, a building being removed, sudden break of a bone.  

What we don't often realize is that while the event was sudden, there were warning signs.  A known underlying weakness. A slow emptying of a long occupied building, deep circles under the eyes, an extra cookie. We are sometimes too busy to put the clues together. It is only after the event that we have great insight into the event.  While we are often shocked by the end-event, we knew at some level it was coming.  We see the trees and fail to see the forest.  

Meb took off several days with our car and drove to see Grandma Mary.  22 and her first road trip, solo.  

So this might not be a huge event for most but it has been so long in coming that as she drove away, I had to smile.  
16 Drivers-ED
17 Expiration of permit
18 Renew Permit
19 Expiration of Permit
20 Renew Permit.
21 Drivers License
21 Road Trip to Niagara Falls

5200 miles later.... 

Long process.  Slow Process. 
Satisfying Process. 

Not all turn out this way. Sometimes the end result is less pleasant.  Dad's death 4 years ago. Some weird bruises on the top of your child's feet. A pair of pants that don't fit anymore.  But change is happening all the time and we cannot stop it.  No matter what we do. No amount of white plastic boxes or labels or time on our smart phones will keep the world from its constant forward motion.  We have to sit back and enjoy the ride.  

2015 is here.  It came without our efforts.  Time to make the most of it. Because it is all we can do.

Thursday, December 25, 2014

Bits of Sparkle and Small Christmas Trees

A life rule is that everything is better with glitter.  Just a bit of glitter. It does not take much. It is one of those things that spreads everywhere.  No matter how careful you are it might end up in the butter.  

The best part about glitter..... no one can get mad about it.  How can anyone be mad to find a bit sprinkled here and there and there and oh yes, over there.  It is like a child's smile and grin.  No matter where it happens it is acceptable and joyous and something that spreads joy. 

In these dark days of winter, or childhood cancer and other dark things, a bit of joy is what we need.  Sparkles and candles and endless outdoor Christmas lights.  

I don't need burning bushing or walking on water to believe in God.  I see evidence of it everywhere and almost every day.  Glitter was a gift from God to remind us of how tiny light can be and yet powerful.  It spreads, it makes us smile and it shows up in the weirdest and most opportune places.  How can Glitter not make you happy. 

So here us your job this Christmas is to spread glitter everywhere. Far and Wide because it is a great gift from God. 

Tuesday, December 09, 2014

Words are inadequate

I have had company.  Old old friends from Dietrich Teaching days.  Or as I am now fond of saying.... "latter days of the last century."  Paul was complaining that he forgets some words, they are stuck in the recesses of his mind and won't present themselves when commanded.  I can completely relate. The words dribble out and slowly make themselves known. Words often fail us.  

I have had a rash of word failure/ inadequacy recently. I will read somethings, hear something, ask something and be told something and then be unable to find the words.

After several decades, I have come to realize our language does not have adequate words to comfort those in sorrow, grief, despair.  The time we need words the most.  We are like desert dwellers at the North Pole.  We don't have the vocabulary for snow.  

tlapa           powder snow
tlacringit      snow that is crusted on the surface 
kayi            drifting snow
tlapat          still snow
klin            remembered snow
naklin          forgotten snow
tlamo           snow that falls in large wet flakes 
tlatim          snow that falls in small flakes 
tlaslo          snow that falls slowly
tlapinti        snow that falls quickly
kripya          snow that has melted and refrozen
tliyel          snow that has been marked by wolves 
tliyelin        snow that has been marked by Eskimos 
blotla          blowing snow
pactla          snow that has been packed down 
hiryla          snow in beards
wa-ter          melted snow
tlayinq         snow mixed with mud
quinaya         snow mixed with Husky shit
quinyaya        snow mixed with the shit of a lead dog
slimtla         snow that is crusted on top but soft underneath
kriplyana       snow that looks blue in the early morning 
puntla          a mouthful of snow because you fibbed
allatla         baked snow
fritla          fried snow
gristla         deep fried snow
MacTla          snow burgers

So.... when a child is sick or dies or is dying or is suffering what do we say...
"You are in our prayers"
"We know how your feel"
"Everything happens for a reason"
"We are holding you in our thoughts"
"How can we help?"
"What do you need?"

Grief is such a basic part of life. How can we
 not have more words?  
I want something more. I want to have a 
lexicon of words as descriptive as "hamburger snow".  I want sounds that can come forth 
from my being with language of words that 
can explain the sinking empty feeling a mom has when she realizes she will never ever hug her child again.  That her child will never be 
to dance at a recital or sit on Santa's lap or 
step into warm ocean water again.  A child will never go on a date or a ride a bike.  

What words do we use for a parent that
knows the end is short.  The words they are
 "End of life care", "Hospice".  

It has been a couple of weeks where I need a dictionary the size of the Oxford English 
Dictionary full of words of comfort. I am very 
frustrated, and just plain sad that I don't have the words or acts or deed. 

 I have also come to realize that if there were words or deeds I would have figured them 
out. I don't think there is a secret society that works on this. I don't believe there is a special pass word or some clandestine group
meeting and taking away the words.  We are
so limited in our acknowledgement of the
 need for a detailed list or words and phrases that they don't exist.  

Instead of 101 Uses For A Dead Cat  I want 
101 Practical and comforting thing to do for
 someone in need. 

Hummmm who knows how to self publish on Amazon. 

Friday, December 05, 2014

Everything old is new again.

Christmas 1923
Living in a small town
Christmas is coming
Shopping must be done
Sears and Roebuck Catologue provided the best way to order. 

Now we go to Amazon and buy this sort of clock, or in my case 10 lbs of Bird Seed. 

Or to E bay to find what we have not been able to find anywhere else. 

Makes you ponder.  

Looking forward to Old Friends coming to visit and making new memories.  Judy and I taught together in Dietrich Idaho. (James and John, I will be cooking this week-end.)  Last Century..... Like this old clock.  

Sunday, November 30, 2014

Thanksgiving and ThanksTaking

It is always a bit of both.  Give a little, take a little.  Leave a little. 

So we cooked.  People came. People ate. Food mounded on the table.  Our tiny turkey of only 21 pounds went on to feed the world. It took three days to do the dishes but what the heck.  Better to spend time together with Friends and Family then to have a clean house.   

For some reason I find I am doing lots of breath holding. But tests are coming and I am always afraid of what they will find.  I just keep waiting for the other shoe to drop. The one that will stick to the floor and not return. I know it is nuts to trust the Universe and also Nuts to not trust the Universe. Childhood Cancer is such a monster. A hideous multi-headed Medusa. Enough. So many kids did not make it to this Thanksgiving and more will be missing next year.  Losses just make it more important to keep going and gathering those we love close and closer. 

 Looking forward and not backward. Pretending there is a long future but know it is not the case for everyone.  So as the knives slip into their designated places, I plan for Christmas Eve.  Crab Bisque, Beecher Cheese and Tomato Soup.  Come one, Come all. Come for the adoration of the Soup Tureen. (We even found the soup bowls)  

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.

Sunday, October 19, 2014

Practical Suggestions for Cancer World Families

So we all know that this blog has been about Surviving Childhood Cancer.  I have belly ached and whined and cried and cheered when appropriate.  

I am a member of a group called Momcology and there the Cancer Mom's of the world kibitz and the smiles are less prominent because we don't have to make everyone okay with the fact our children are so so sick and often die.  The group grows every day and every day there is a bit of hope, a lot of despair and hopelessness. It is a real representation of Childhood Cancer.    Moms that are just starting, Mom's ending, Mom's with kids that have relapsed and died.  It is not a happy happy place but It made me wonder why ti seems such a good place to hang out. 

Many supportive friends have helped us all through this difficult process. We have been the beneficiaries of much giving, both time and money and practical actions. Much prayer, encouragement and cheerful wishes.

 I was reading something about a woman in an emergency room and another patient looked at her and said:  "Everything happens for a reason."  The writer wanted to yank the woman's hair out.  I am a bit more forgiving. As Cancer Mom's we don't even know how to respond to the words that swirl around us.  Things like Chemo Therapy, Radiation, 40% chance of survival are common words in our vocabulary.  We no longer live in mainstream universe. We are off somewhere in a place that looks like our world but with a heavy dose of Twilight Zone set dressing.  

So here are some ideas the next time someone posts their kid is having a rough time or you hear about a family that is going to be dealing with long term health issues, don't just respond with "I am praying for you."  While that is nice an all, send them a gift card, no amount is too small.  Go the the blood bank and donate blood.  If you live in the same town, go and promise to take out their garbage every week. Rake their leaves. Organize a meal train for the family not in the hospital. Make the child or parent a really soft pillow case from all that fabric you have in the basement.  Connect.  The kids love I-Tunes, Target, Victoria Secret gift cards. Cash in your miles so a family member can travel. 

Trust me it does not take much. As the blogger pointed out today:

  if you want to help someone in distress, buy her a cup of coffee or a cocktail. Tell her you have experience something similar and you feel much better now. Tell her you understand how she feels, how unfair her circumstance is and how much it can hurt when fortune frowns on you. Smile. Tell her you are sorry she had some bad luck.