Wishing Rock Dreams....

We had another meeting last night.  Out on the patio, warm, Ice Tea.  Good ideas, good conversation.  No cookies. 

Shannon Huber came.  Jaxon was her special little guy.  He has been gone for a year.  

He was a special little guy.  

After everyone left, she and I had time to talk.  We both agree this Wishing Rock thing is a way to stay connected in a meaningful way with those that have followed us at Seattle Children's.  There is such a need to reach out and touch those that are starting this process.  We are hoping to do a small thing. A meaningful thing.  

We all want our time in Cancer World to have a good purpose.  We need light, not dark.  We need to make sure the hours we all wait, the millions of dollars expended, the long suffering of our children have purpose. I think this project was born from a desire and acknowledgment that  as humans we need connection.  It is important to reach out touch and do a kind act.  More important, the connection needs to be made. 

So, we are off and running.  Things are falling into place. We are going to make this a great thing. 

Hope

Down a deep narrow dark alley a fern reaches for a bit of life giving sunlight.  We all need to reach out a bit 

Slight Variations and the Twilight Zone

We grew up on the Twilight Zone.  I remember an episode where a women's house was invaded and she was trying to get rid of the tiny invaders.  They had little laser type things. They pestered her and it was sort of scary.  As she pounded at them and smashed them with a broom the camera scanned down and there, on their tiny little space ship was an American flag...

One of my first lesson's in perception..

We have been in the Twilight Zone for a long time.  Sometimes it seems normal and might look normal but that little pesky laser thing keeps hanging around.  You know it is there but just not sure where.

I am looking out my window and am looking at my amazing two trees.  Each is a Katsura, a Japanese tree, round leaves, early leaves on, early leave off.  Each fall the trees turn and are a little bit different.  One if more orange and red, the other is more yellow.  One is taller and more narrow.  Their bark is a bit different  They are not identical upon some serious examinations.   

As a species, we look for differences. We spend a whole bunch of energy trying to be "like" everyone, yet somehow different.  We want the similarities to be positive unless there is a problem, real or perceived, and then we want to differentiate.

  It sort of goes like this:

My child has the good kind of ALL (like there could ever be any good kind of Childhood Cancer.) 

They found three 10/10 bone marrow matches.   The cells are coming from Australia.

There are no cells we are going to have to use cord blood. 

We are in a trial. 

There isn't a trial but we are trying to get on one.

We have never had to miss a day of chemo because the counts are good.

We have missed whole doses of chemo because the counts were so good.

This is a relapse post Lymphoma Treatment.

This is a relapse three months off treatment. Six months, two years, 57 months...

This is a new secondary cancer.

All are variations on a theme but they are still the same terrible childhood cancer.  It just sucks.  No other way to put it.  It just is a bad bad thing.  

The good part is that we come together, we recognize the pain, we gather our resources, we help each other, we learn about how wonderful and generous the world can be. We find the strength and help of God, in all his/her iterations is ever present. 

I guess I choose to make my Twilight Zone look a bit less dreary....

Cancer Mom: Humor a Must

Keeping a sense of humor is required.  It is necessary to not go into the deep dark place of reality.  It is important to deflect the constant barrage that is being a Cancer Mom.  If we don't laugh, we will cry, fall apart, kill the barrister, bomb a bank and then go back to the hospital to face the next thing.

Today I was on the phone with someone from our team from Cancer Part 1. They were commenting on how beautiful Mary-Elizabeth's skin had always been.  I pointed out the freckles came from radiation and during the difficult acne years she was on so much chemo she had no white blood cells to make a pimple. 

As a Cancer Mom we have to dig and find the funny moment or  thing about the situation or we will die.  Humor is a must.  We don't have a choice.  We are here. We are here to stay. We have no practice, no idea what we are doing but we have to be ready to laugh about it.  Granted, sometimes it can be "too soon" but at some point the laughter comes. 

Example:  ME as in the hospital for an overnight dose of something so nasty the nurses double gowned and masked when they were administrating the chemo.  It was the night of Bush v. Kerry election.  Things were going okay as we drifted off to sleep. When she finally woke up and we had the final news Kerry would really really lose, she started to be nauseated.  It went on for hours and hours.  It took an act of God to get us home. 

One of the young interns came in and asked what the problem seemed to be.  He knew she did not have her nausea under control.  I told him it was her body's reaction to 4 more years of Bush.   He just looked at me,turned around an left the room.  I thought it was funny and partially true.  But then I was sleep deprived, had a child with a life threatening disease and nothing was really funny. In fact it is a way to keep grief, disappointment, frustration and anger at bay.  It holds it in the underground tanks until they begin to leak.

As a group, we are mostly able to see some sun in the dark clouds.  If we don't, we get dragged down to places of horrible despair and we do not have the chance to be there too long. We plow through for the most part.

At some point it has to ooze out and be exposed to the sun and healing has to begin.  I am attaching a link to a great bit of writing from a mom who finally met her anger and has decided to let it be acknowledged.

http://mindithemagnificent.com/2014/04/23/an-unexpected-guest/

It is worth a read. 

Just know eventually most everything can be turned around and show its fun side.  We keep the brave out so everyone does not know how scared we really are.  

Eagle Sighting

WE are bird watchers.  Binoculars, feeding, listing making, discussions,  Come Look.... It is the story of my life.  We are observers. We were trained to see things other people don't. 

In fact after I took the MMPI (some sort of test established to figure out if you are sane) during law school, I was called in and asked about some of my answers.  I had answered yes to the question:  Do you see things other people don't?  I answered yes.  I do see things other people don't.  I am more observant and aware.    A gift and a curse.  

I see pain and suffering in odd places.  It does not leave me. I read between the lines, I observe the silence and lack of communication as a sort of communication. I don't see dead people but I see very sad and hurting people.  It was the best and the worst of my lawyer time.  I wanted to help. I want to make it better. Many things can't ever be made better. 

MEB is doing great. But she is deeply deeply scarred and will carry those within her being forever.  Many are not visible. They are there.  Sometimes they rear their ugly head in odd ways. Panic over bad grades, worry about when a check will clear, avoiding new things.  Now lots of these are very normal stuff.  Hers has a bit of unusual intensity. It makes me worry but then I don't think there will ever be an end to the worry.  

We went to a special birthday party yesterday and went for a walk looking for a beach path.  She would not enter the wooded area even though it was raining and dry under the branches.  She fears the woods because of the fungus, the mold the stuff in those areas.  No amount of coaxing would work.  Instead, I left the dry and we walked up a pretty impressive hill.  5 flights on the Fitbit. 

 During the walk we were looking up and down and out on the water. Then it was spotted, the large mass of dense sticks tucked in the top third of a Douglas fir.  We had seen a couple of mature Bald Eagles flying around and now we knew why.  A moment of quiet observation of a good thing.  The sort of observation makes you think about things grander and more mysterious. A special moment of wonder.

Then there is the really frustrating bit of observation. A new bird, a flash of yellow, serious concentration on the small black and yellow being searching for food.  But sometimes even with the most astute observation can be thwarted.  Somethings are so very difficult.  One of these visited. I will never probably know which one it was.  It just was one of them.

One thing I have learned is that a flash of observation sometimes has to be enough.  We seldom really ever know the answer.  

Piles of Pennys

So how long will the penny be around?  Canada has stopped using them. We have them but they feel weird. I have a big jar of them because we started saving change a couple of years ago. Or to be more precise, I started to save change.


Some are shiny. Some are old and tarnished. Some are really made with copper. I even have a couple made of aluminum from WWII times. We are attached to our pennies. 


 A penny for your thoughts.
A penny saved is a penny earned.
Penny wise but pound foolish.


No one really pays attention to them but I bet if we just stopped using them on a certain day, there would be screams.

I think like many things the penny will fade from our memory.  It will be something we think about when we run across those spare ones fallen in the corner of a drawer.  Insignificant. Minor. Minuscule, not worth the bother.

It makes me wonder what else we have let fall in the drawer.  An unfinished letter, an old stamp, a memory card, a cord from a long gone electronic devise, a half-used up pen, a key, a broken chain. Things that seem to have slipped away from our lives. 

Because I know things can slip away, I try really hard to keep in touch with the important ones.  I am working on people right now.  I figure what is the worst that people can do be ignore me.  (Not that I am easy to ignore.) I want to make sure I contact and connect with people in a real way.  A call, a note, a real cup of coffee. An invitation.  It is not necessary for the house to be perfect or even acceptable.  No one notices I have a pile of piles that needs to be filed or bits and bits of projects on my table in progress.  A book or 10 on the coffee table might lead to a good conversation and some exchanges of ideas.

I guess as my soul energy returns I can reach out more.  I have been in a quiet place for a long time.  A place of self reflection, a bit of self pity, a place of worry and deep concern.  A bunch of pennies have piled up and it is time to use them.   

I am the Mother of a Bonifide 17 year old as of April 12, 2014

Yes her age in the US is 21.  If she was in Korea it would 22 and if she were in Saudi, who knows (they have a truly complicated calendar.)


We all know she is an old soul.  She never was a child. I remember a time when she was about 9 months old and lying on the bed, looking at me and talking. She was just jabbering in completely sensible statements with lots of meaning and inflection.  I was not able to understand but it was at that moment I realized she was never ever going to "not talk".  She is an old old wise soul.  She carries cancer around with great grace.  She doesn't flaunt it, she doesn't explain it, she uses it to her greatest advantage.  Not in a bad way. She is able to take the lessons learned and apply them to her life.  She is very serious about school and picking her friends.  She knows she has to say no to lots and lots of things.  She has watched death swirling around her and knows lose as no one should at that age. 




She has lost 4 full years of her life.  Two years during Cancer Part I and then two during Cancer Part II.  She did not have the energy to keep growing emotionally.  She had to keep focused on getting well.


Driving was a big example.  


She took Driver's Ed at 16, pretty normal.  I could never get her to drive after that.  She just would not venture out.  I remember taking off the moment I was able to drive and never stopped.   I even bought her a car in anticipation of her driving.  Okay it was a tank but it would protect her when she ran into those things that jump out all over the place when kids learn to drive.  


Well she just didn't do it.  No driving. No real movement.  My mom finally told me to "leave her alone!!!"  She told me ME would drive when she was ready.  She always had her own schedule and was going to stick with it.  Mom was correct in that regard.


ME decided it was time. With the help of John Carden and several hours of driving and cones for parking practice.  I guess she does great without her mom in the car.   It is all good. 


She scheduled the written test and passed. She scheduled the driving test and passed. She went to the licensing bureau and they took a wonderful picture.


One more step in the road to normal. Hopefully the transplant will give her the years to catch up. Boys are next.  Her dad can worry about that!....

Windchimes.....

WE have lots of them.  Lots and lots.  My ear only likes certain types.  They need to be tuned.  Not just clanky.  They need to happy sounds.  They clear the air and the surrounding area of bad vibes.  They must be willing to become tired and faded over time.  A bit of rust seems to be all right.  It is a good thing.  clear crisp sounds. 


I recorded some of the night sounds.  It starts with slow movements of the trees, there is a rustle in the magical Douglas fir in the neighbor's yard.  It gains some power as it flows through the rest of the grove.  Then they start.  The first clang of the rough, single temple bell, the various chimes join in, followed by the gong. The garden gong.  A virtual cacophony ensues.   As quickly as it starts the silence returns.  


On a good night they will bang and clang with great enthusiasm.  Great fervent evil spirit banishing sounds ring out.  Mostly we have to be happy with a bit of some tinkling. Gentle reminder of the presence of good spirits.


I found a new set the other day at Good Will.  Brand new, Woodstock Chimes.  Olympic... power of the ancient gods.  I know why they had been donated, they are deep and resounding as they sway with the trees.  They have a whole area of their own.  One set it all that is needed outside of Mary-Elizabeth's room to keep away lots of goblins.  Lots and lots.  


I need them.  A small barrier against the never known predators stalking us.  I am not sure how to keep the demons away.  Sort of like garlic against vampires.  Not sure if it works but know it is something I can do.  It is one small thing. I guess it is why the tiny chimes are in the Wishing Rock bags.


Every day I read about someone just beginning the Cancer World journey or the Bone Marrow Process.  I take a moment, feel the panic, take a deep breath, say a bit of prayer and answer with a comment.  It is not a usual comment.  Even today I don't really understand how horrible the process has been.  Day after day, week after week.  While I was responding to a mom, I came up with the name of my book.   "It Certainly Isn't Like it is on TV!!!!!" 


Please come visit on a windy day.  Enter through the secret barrier of the chimes.  Know they are there for everyone.  Each a message to those we have lost, those who we will lose, all who are fighting, all that hope to never have to fight again.  

Marys and Sallys and SallyAnn

I had an interesting conversation with Esther Smith last night.  It was midnight her time, in New York City.  (She and I have a weird connection about Address Books and a bunch of other stuff.  She teaches at Cooper-Union and her husband runs a Printing Press company Purgatory Pie Press.  Worth checking it all out.)


So last night she posted a question about the following sentence: Mary's going to the store to pick up some coffee for Mary's brunch tomorrow.  


So the question revolved around the issue of Mary's as a possessive or Mary's as a contraction for Mary is.   I love questions like this because if you made the statement with the spoken words others would understand you.  We say it all the time and don't think twice about it.   Mary's = Mary is if the context makes sense.  But when it is written, it is clearly incorrect.


Sally's writing a blog post this morning.
Sally's blog was about Sally's blog.


Perceptions, expectations, reality, it is all such a slippery slope of words and other such nonsense.  I have such a different reaction to everything I read and hear than you do. We each have every thing filtered through our own life experience.  It depends on so many things.  Something as simple as how tired we happen to be or what has gone on that morning.  How frustrated, how emotionally spent we happen to be.




Because of my lawyer training, I don't quite hear things the same way as you do.  I usually ask the question more than one time because I want to make sure I understand.  It is just something I do because there are so many ways to say so many things.  We all live with assumptions and make them at the most inopportune time. 


It made me think about Marys and Sallys and all the rest.  I have found I definitely carry two Sallys with me most of the time.  One is Lawyer Sally.  Outside Sally, Hard to get along with sometimes Sally.  She sort of heads out into the world read for battle.  SallyAnn is not like that at all.  She is about 10 or 12 years old.  She sort of was stuck when her brother Eddie was taken to Napa State Hospital.  It did not make sense to her why he had to go.  So she is not quite grown up yet.  She still likes to watch old movies from the 50's and loves Cream of Mushroom Soup on everything. 


The Sallys knows lots of Marys.  Her Mom, her Mother-in-law, her daughter, Mother Mary, several cousin Marys and Aunt Marys.  Lots and lots of them.  She feels a certain comfort in all the Marys in her house and her life.   Marys keep her centered and her feet on the ground.  She seeks them out when she is upset and is a bit confused and worried and panicked and generally out of sorts.  The Marys give the Sally and SallyAnn a place to rest and they catch her all the time when she is floundering.  


Sally's blog is a lot about one Mary or another.  SallyAnn knows that no matter what has happened to Mary-Elizabeth, Mother Mary also had it bad.  Her child suffered and died in away she never imagined.  


So Mary's keeping me sane during this time of growth and transition. Now who knows which Mary's providing the solace and balance but since I have lots in my life, we can rest assured it is one of them. 


(Some have commented on how my writing in this blog should be more polished.  I don't think Lawyer Sally writes here.  There is a smaller more confused scared SallyAnn that is the main writer. She writes when she is scared and hurt and overwhelmed.  That is her best stuff.  She pours her heart onto the "web" and in a sense lets it go.  Sometimes, like today she is just babbling but feels a need to express some babbling. Rest assured, some day grown up Sally's going to do some editing. )               

Thoughts on Change

"Everything in the universe is constantly change and nothing stays the same and we must understand how quickly time flows by if was to wake up and truly live our live"

Jiko, from A Tale for the Time Being.

But how do we know if we are awake?  I guess that is only one of the questions.   Do our dreams prod us? Do our fears let us know we are slacking or we are awake?  I wish I knew the answer to all of that but I suspect the definition is different for everyone. 

I know we all expect to live each day to the fullest if we are that sort of person.  I think some are more bold than others.  Some are risk takers, some are risk avoiders.  I know for sure my daughter is a watcher and thinker and she does not make a move without much cogitation.  The whole menu is read before a decision is made.  I am more of an impulsive person.   Both methods are good things.

I suffer from a fair amount of PTSD from the whole cancer twice in a decade thing.  It changes you but I think it does so for the better in lots of ways.  It certainly opens you eyes to another realm.  I am entering the alumni role now.  We have graduated, so to speak.  It gives me time to reach back and try to help those in the midst of the process. 

I remember when MEB was first diagnosed and St. Joseph came to the rescue.  The school, the church, the families.  The first on our door step was Rick Boyle.  He has been at our side during all of it, the first diagnosis, the relapse everything. It was an amazing gift and will never be forgotten.  Not to say everyone did not do something of great value at the time.  He was part of my new tribe.  He knew in that way only one in the same situation can know. 

After induction to the tribe a creation of new part of your being happens.  Sort of like a growth.  Maybe it would be better to think of it as some sort multiple new neurons in your brain.  It can't be removed and it sort of becomes your friend.  That bit of growth gives you more compassion, more insight, more creative powers, the ability to help those in your tribe survive.  It makes you know things no one wants to know.

So our time in Cancer World keeps changing who we are and what we see and do.   I am trying to make it less of who I am.  I don't know if I will ever be free of the worry and anxiety it produces.  I find that if I can help someone else and focus on their journey, it helps. A lot.

Change is always changing.  Time is always moving forward. I have no control over much.  Mostly I think I have control but then I am very very wrong.   Everyday I try to do positive things for others.  Good things for myself and keep moving through life   Awake.