Waking with More Questions Than Answers

I am a person of endless questions.  I want to know about stuff.  It is a driving passion. Why is the dirt red here?
What is our elevation?
When did they plant those trees?
Why didn't they ever plant trees?
What are those trees?
What is Devil's Slide?

How did they find the passes through the mountains? 
Why did Lewis and Clark use the Missouri and not the Mississippi?

Endless, all the time.  Discussion, and contemplation and Google searches.

So yesterday as I was driving into the valley, I was thinking about the last time I did this drive.
I was 22 years old.  The age of Mary-Elizabeth.  I was going to my first job as a Teacher in Dietrich Idaho.  I was to teach English 7-12, Reading and be the Librarian.  Salary of $8,800.00.   1977.  

I don't know the answers to so many things.  Where did I stay until my little trailer was ready? What did I bring with me?  Did I have my sheets and blankets?  How did I furnish the place? Was there furniture here?  
How in the hell did I do the job? I do remember a call to Dad and some tears.  I was worried and afraid and felt so alone. The call was from a pay phone in Shoshone. 

I am going to have to ask Amy.  She came to visit me.  

I do know the answers to some of the questions.  I learned to love it here.  To this day, I love the high desert with the vast horizons, the burrowing owls, the antelope, the storms, the sunsets.  I remember growing to love my fellow teachers.  James, John, Judy, Anne, Janet.  Each added something to my life in a different way.  Things I have carried with me all these years.  

Oh, dear, time is running out for this mornings musings.  I am meeting James and John for breakfast in Twin Falls before we make the final push to Seattle.  To our current home.  

I am so glad to have been on the road to Twin Falls more than one time in my life. 

Unpublished thoughts from the Beginning of Trip, thought appropriate as we are almost done with the journeyu

We woke to Sunshine this morning.  Billings. We have traveled less than a 1000 miles but then that is okay. We are on a road trip. A Sally and Mary-Elizabeth Road Trip.  So we don't get very far very fast sometimes.  Sometimes it is necessary to leave the room in Drummond Montana at 11:45 am. 

We then need to abandon the plan and head off to places unknown.  Only rule.  Must be headed South or East.  No back tracking.

How can you not go to Highway 1 and stop at Hall and Philipsberg and see the worlds best stocked candy store.  Cool, cool old town.  I want to move there.  Of course every town we go to “I want to move here” comes out of my mouth. Small is better.  While not practical it feels,  better.  It is so much better. 

Back on the road but not until we have taken a couple of good pictures and stopped at the Sapphire gallery.  Who knew they grew in Montana.  Then a moment on the really high scary pass with the cool canyons and cool rocks and then a drive through Anaconda…

Then time for some serious driving.  No She wouldn't let me stop at the Ghost Town or the head waters of the Missouri River.  No we could not visit Three Forks State park or go find out why they named Greycliffs , Grey Cliffs.  No we could not go ask to drive through the private property on Crazy Mountain and see how close we could come to the base. (Crazy Mountains, just sitting there on the plain.  Looks like they were plucked up from the Sawtooth range and plopped down.

We drove, we saw the runners for the Special Olympics,  (Event starting in Billings next week-end.)  We were almost smashed by very big, did I mention big pick-up trucks… Frozen lakes, hail, visible snowing in not so high mountains.  Hugh valley vistas, lots of bovines and sheeps…  lots of critters.  There is a great lack of Mooses… I want to see some Mooses.  Not lots of birds, deer crossing and one sheep warning signs.   No sign for the Clinton Montana Testicle Festival. 

Lots of really big trains going and coming and going.  Rail crossings are to be respected.  No messing with them.  There are trains here that could crush your car like an aluminum can.  

So today, we are headed to real sights.  A search for answers.  We will peer into the past and wonder.  Why did Clark carve his name?  Big Horn. Why was Custer so arrogant?  Why do the Praire dogs looks cute and can we have one?  Where did that hunk of rock come from (Devils Tower) and of course it is sacred! 

Odd and only funny at 1:30 am.

            Perkins, that is the Dennys for here.

            Oh, I think that is a USO.

            Clarkfork river…. We have crossed it only 16 times.

            How do those black bovines birth those white babies.

?

Speeding back

Go West Young Man

We are following that tenant

Ohio

Indiana

Illioniois

Missouri

Kansas

Every state is so different

In Missouri we were reminded

"Planting Season Watch for Farm Vehicles" we saw one tiny blue tractor.  We think this is equivilant to Watch for Falling Rock or a snipe hunt

We continue West. Kansas

Colorado and on to Wyomming.  

Dark Side of the Moon..

Sun again. A bit of sun.  We are finally at the end of Eastern Journey.  We swing around the back side of the falls and head back West.

Frankly I was a  bit disappointed at the falls last night.  We of Western blood are not used to seeing falls quite like this.  From here we are on the top looking down.  I was raised with  Bridle falls, Yellowstone falls,

Snoqualmie falls.  They come to us from mountains high above.   This is something where the water just falls, over a cliff and we are level with them .  the mist was also in the way and the huge Midwest thunderstorm.

The sun woke me about 6 am and I was pleased to see that the mist settled down, and I began to watch the water, the never ending water fall, plunge, leap, did I mention fall, down the horse shoe cliff.  The river is Mississippi wide and smooth and the rapids are short and tentative.  I can imagine it must have been a surprise to see it from river level the first time.  As I look at the people walking by this morning, the size is confirmed.  I will be wearing my new Cowboy rain coat.  I will be seeing it up close.  I will be a grand adventure to our trip.  Our swing around will be eventful as we head back to our home, crossing the country licity split.

This time it is about seeing people we love and care about.  Part of our people that have been with us for so long. Deeply held and valued friends.

Wind Is Blowing us East.

serious serious wind...
Whistles through the trees, what few there are and pushes us East.

We did a good amount of driving yesterday.  We are having to change one of our stops which will change  some others but then we are good at dealing with side affects.  

So we head for our first unplanned but must do Spam Museum.  I have not seen a single sign heading us to this discover.  We are good explorers and we will find, devour and shop in the gift store.  

Then off the Niagara.  No Racine.  They just opened the Johnson and Johnson headquarters building to tours and they are all full into fall.  I am not the only one that wants to see it.  Oh well.  Who knew?  I guess lots of Frank freaks.  So we will re-route and see were we go.  I think we will be heading down from here and over.  We will have to push it to be there tonight but then we will see. 

Still driving 80, on red roads... flatish land.  We are going through lots of reservations of the Plains Indians.  Same observation, bad houses, piles of cars, Great Horses..... As we go and see this place, it makes you ponder what the Indians must have thought. I understand why they fought for their land. The most puzzling for them would have been why we wanted the land. 

How hard would it be to loose this great vast space, life giving land full of buffalo and fish and fowl and we wanted to dig holes and find gold.  Something they did not value and from the looks of their places their values are still different.  They have lost so so much of their culture but the horse is still cared for in a special way... 

Makes you think.  Makes me sad. Makes me wonder.  It is nice to be on this trip and see so much of the country still thriving and growing and not totally destroyed and polluted...

Mother's Day in Wyoming and South Dakota

Highly recommended.

Starts with a visit to ShopKo... A favorite of the Lanham Girls. This is a Eugene, Coeur d'Alene, Newcastle SD sort to place.  It contains Payless and some frozen flowers out side in a nice covered garden spot.  (34 degrees and snow when we left Newcastle.)

Head up some crazy construction filled road to the Jewel Cave.  They think it is 5000 miles of cave but only have explored 169 miles.  They find 5 or so miles of cave a year.  We opted for the one hour 30 minute version. 765 stair steps, up, down, up up, down up ....

MEB was so happy to be in the deep dark place.  We always to a cave on our trips.  Shoshone Ice Cave was the first.  This cave was amazing.  Lots of Calcite Crystal covered walls, slimy rocks and lots of dripping.  Really was an experience. 

Headed to Crazy Horse.  Meb was not too disappointed when it was covered in a blizzard. We had had a great meal of Buffalo and donuts.  Yes donuts.  They are very popular.  Wall Drug  a donut and cup of coffee 5 cents. 

We went to Mt Rushmore.  It remains an amazing place.  I woke up to them one morning while eating my cereal in a little box.  The sun was just hitting their faces.  I was 5 and they were huge.  I visited again in the late 80's and they had shrunk in size.  This time they had grown.  My camping place is gone and a huge parking complex has been built but they remain amazing in so many ways. 

Wall became our destination for the night.  A road trip with less than 200 miles but then we had been deep in the earth, saw wild turkeys, dear and buffalo and a spare antelope. 

It seemed no fun to return to the freeway.  Highway 14, 44, 74, 385 and all the other little roads.  Mostly paved, always a driving challenge and so interesting are behind us. We continue to marvel at what is the vastness of this country.  To have left St. Louis and traveled to the West Coast with no map and no clue what lay ahead was a feat of amazing courage.  To walk across with a wagon train and a cow, some chickens and pregnant makes you think about what courage it takes to make big changes in your life. 

Meb is amazed every day.  She is filled with wonder and questions and insight.  More times than I can count, she has gazed in wonder at a pile of rock and said "Mom I am so glad we did this."

We are making another layer of calcite crystals over what has been barren rock that has been the last 2.5 years of our live.  These new shiny Crystals are our new reality, This is the present, finally covered in shiny new future. 

Short Update

Spokane
Liberty Lake
Top of 4th of July Pass
Missoula

Clinton
Drummond
Philipsburg
Anaconda
Butte
Crazy Mountains
Bozman
Billings
Pompey's Pillar
Little Big Horn Battle Field
Broadus (Powder River Tavern, Cassino, Bowling Alley and Arcade)
Devils Tower
Newcastle

What can I say as we wander

our way around the West.  Long roads, no cars, blue sky, cows, deer, antelope ranging, elk, prairie dogs, horses. (Crows and Cheyenne have better horses)

This is a trip of amazing vistas, mind expanding experiences and wonderful time with each other.  We are great road trippers. We laugh, we talk, we say "oh look" all the time.  Nothing boring, nothing simple, nothing complex, just exploring.   

I do love driving 80 miles an hour.... 
On to the Jewel Cave.

Certain Days there is Space for me to do Certain things.

For the first time since transplant, I am leaving our house for what seems like long time.  I am truly going to be away.  We were in Eugene a whole lot of last summer but it was different because if need be, I could be home in 5 hours. The dogs were with me.   

Nothing huge.  This time time I am leaving the dogs, the house and someone is taking up residence for the entire time we are gone. I have taken this time as a time to clean out a few things.  One of them is my voice mail.  

As everyone knows, I am terrible about listening to messages.  I just look and call back.  Seems like we can cut to the chase.  Seems like a good thing.  So I took some time and cleared some messages. They are stingy about how many you can have at one time.   I listened to the first few messages on the rest.  I have three or so very very old messages of Mary-E as a child and one or two from Mom.  I have a few from my sibs but the most difficult are the ones from our Dad..... That voice, that bit of humor and whimsy, that call made to point fun at some sort of item in the news, a serious point to be discussed about a legal issue or just to say hello.  I could not bring myself to listen.  Just hearing the voice, for a few minutes was enough.  For now.

There has been lots of discussion about the new Cancer Kid movie coming out this summer. It seems to pop up everywhere.  I made the compromise and watched 50/50. Someone needs to tell the peeps in Hollywood that when the hair goes, it also means the eyebrows and the lashes....  I would give it a 4 out of 10.  Love the people. Story written by someone with a book and no real cancer world experience.

So I The Fault is in the Stars appears again.  Yes again today.  I protest. I look at another web page.  There is a secret Facebook page for moms and caregivers only. Have to be added, have to be approved. Have to know the secret handshake and have the correct browser.  They have teamed up with another organization that listed some of there projects... 

I hit a link and found this...
www.youtube.com/watch?v=5iTImZGOtc4

This is real. This does have the real ending. Hollywood should make this into a movie.  

Now we are off for a bit of an adventure....  

Seattle to?????

Two Worlds

So there is a big movie coming out this summer. "The Fault is in Our Stars".  Young adults, cancer, love, death. 

Cancer just keeps popping up and I feel like I am playing gofer game.  We see it all around us.

You can't ever win. They are everywhere and there are more and more of them coming.  I am sure the Hem/Onc docs and researchers feel the same. Just as they solve one problem, another pops up.  No matter how prepared you are, they keep coming back.  Never ending. 

As many many know a number of us are working on founding a Non-Profit named the Wishing Rock Project.  It is mixed group.  Friends, relatives, neighbors, Cancer Moms.  All working to make a connection to the new families.  I was meeting with one of the moms tomorrow.  I received a message from her apologizing she could not meet.  Scans were done last week and they found cancer again.  Again. Again. Oh Crap.... Again. 

It took my breath away.  A moment of terror.  Then I realized I need to send one of the Wishing Rock Bags to her.  Sometimes it is all you can do.  Reach out, let them know you are listening and try to give them a place to leave a bit of the pain and fear and endless anxiety. 

Here is a family trying to regain traction in the "real world".  Moving forward, working on catching up and trying not to look back too much.  Starting to think it was over.  And then....  It has been my experience that no matter how much time has passed and no matter how good things appear a bit of you remains in Cancer World.  Just a tiny finger or a wrinkle or a bit of gray hair.  It remains.  It is stretchy and can seem to be a very very very long tether but a tether it is. No matter what, it is there. It may be invisible to the "real world" eye but it is there.  

Given this is our dual reality, we are going to pull at the tether a bit.  I am amazed that ME is willing to go the distance.  She was not even willing to go to Eugene until Dr. Belle promised to be there, just in case.  Some how she is at a place she is willing to test the tether.  We are headed to places with no doctors, no internet and no good coffee.  It will be a challenge. We are taking a book to read on the road.  I hope to be able to needlepoint for a few days. 

We both understand this is only a temporary escape but we are going to find a bit of respite. A bit of joy, a bit of adventure and a bit of fun.  We expect to find these guys. 

Promise, I am leaving the mallet home. 

I Can't seem to walk into the fire anymore....

I just don't have it in me anymore.  I don't have the strength or the will to really be of help to people in legal battles.  I thought I might be able to do a little.  I was wrong.  I was so so wrong.  

Making a phone call on behalf of someone is hard.  I don't think I can handle the disappointment. The expectations that things should be fair. I have lost my touch.  

I always was a tenuous lawyer at best.  I never was a Lawyer.  You know one of those people that always wears a tie and suit and never leave the office.  They are there because they are Lawyers.   I think it is sort of like the military.  They want you young.  Mold-able. Some insecure in their selves so they cloak their insecurity with Lawyer Ness....  

Now maybe it is not fair. I do pull out the lawyer sometimes.  It is always a judgement call. Always a wonder if it is a good idea.  We lawyers don't have the best reputation and we know how to make people miserable.  Maybe that is what is missing from me.  I just don't have it in me any more. 

My entire being has changed. I move in a different reality.  You see me, you talk to me, you do things with me but I am really not attached to the world in the same way. 

I spent the morning with a Mom in the Chicago area with a child headed to transplant.  They might be denied because of a myriad of reasons.  Oops, no life saving procedure for you.  Go back start again.  Sorry. 

I so dreaded transplant.  I have seen Elise R. go through it and knew of its horrors.  It was so bad.  I never saw anyone have a "easy" time. I was horrified when they told us she was headed to transplant. I tried to talk them out of it.  I didn't want the double lumen. I didn't want to have to find a donor. I didn't want.... and then.

I couldn't wait.  Once I knew it was coming, I was ready. Let's do this. Lets get going. What do you mean it takes months? What is the hold up?  What do you mean she might not be in remission? .007 looks pretty good to me. Why do we have to do all those tests AGAIN  We just did them!  Oh, you mean if things aren't perfect we might not go to transplant?  Oh, I want my transplant and I want it now....

The old, wanting what you can't have.

Would I have let her sign the papers if I had known what I know now?  I would because she has finally turned the corner.  If she was one of the many that have died?  I don't know.  I really don't know.  

We all make the best decisions we can at the moment it has to be made. Then we have to walk the path chosen.  

Conversation goes this way:

I don't know how to best make a decision?

But it has to be made.

What ever decision is made, is the right one. 

Sunning Turtles

Reminded me it was important to take a few moments, when the sun arrives.  

I am sure 93% of Seattle is out soaking up some much needed vitamin D.  I let myself spend a bit of time in the sun. 

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.