Driving in the dark.

Our last night in Twin Falls, I had a dream we should stop in Yakima and see Amber and gang.  It all played out in the dream.  Goats, Allie, Sam and his crazy idea that pizza should not have pine nuts and goat cheese on it.  But then I knew we had smelled the barn and wanted to be home.  We were ready. 

I knew staying in Twin Falls would make the day longer.  A couple of hours longer.  I did not know how long or how far. 

I must say I was pretty impressed that we had driven all but 110 of that distance since leaving at 10:00 am.

Granted we did not leave Twin until about 11:30. 

Car needed to be washed, we needed gas, MEB needed boots. Cowboy boots and we knew we were headed back to the City.

  I need to see the Niagara of the West.  

 What more can I say.  We were avoiding the inevitable.  

I don't think I can express in words how fabtabulous the journey was. It was important to disconnect and really hit re-set for us.  It was necessary to reshape our relationship, our reality and to do so in the vastness of this country. We were rushed, but not really.  Whenever we stopped at a planned or unplanned destination, we were not rushed.  We did not leave before it was time. We stayed focused on the event.  We waited for things, we observed, we soaked it all in and only then moved on to the next thing.  

Cancer has given us the ability to focus on the NOW.  Not next week or the upcoming anything.  We are just able to be here, now. 

Time is a gift. A gift we often squander. A gift we waste with alacrity.  We are a fast, rushing people. We are too busy doing too many things at a time. We have lost our ability to just "be" with each other and connect.

While we didn't want to leave Twin Falls we knew what was waiting for us at home.  Dogs, people, gardens, job applications, on-line college courses, but more importantly our friends and family. 

We drove in the dark, we slept in our own beds. 

We are glad to be back and have created enough memories to push  Cancer Part Two... to a more manageable place in the memory banks.

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...

A certain Kind of maddness Creeps in after a few Days at the Hospital

Being inpatient at the hospital when your kid is being treated for cancer is so difficult. It is impossible to maintain your sanity and sense of humor for more than 6 days.  Max.

First you have the worry of being there if it is not a regularly scheduled admission.  You are there because you child has some unusual unknown bug.  While you might be there for a fever, in Cancer World they are dedicated to finding out exactly what it is.  They draw blood cultures and bunches of Petri dishes full of lemon jello sit around and stew until something grows. 

Lots of times nothing grows and you are still stuck.  If the fever is high enough they put the kids on a broad spectrum antibiotic, sort of like a Z-Pack.  The shot gun approach.  These kids are then stuck until they finish 14 days of the stuff because usually it is IV.  You are already going to be there 8 days beyond sanity and it is just a bone they throw you and they don't mean to ever let you out. 

Then a few days in (3ish) they figure out what you really have and a new type of antibiotic is chosen from the shelf.  It has been pre-tested to see what works the best.  Then you wait again, sometimes the days start over.  

At that point you know for sure that you are there at least two weeks.  But.... it might be longer depending on how low the ANC is at the time.  If the counts are lower then 200 your are stuck like a bug on a windshield waiting some more. 

So you wait.  You wait for every blood draw. You wait for every temperature reading.  You wait to see what comes from the kitchen. You wait to see if she chooses "the dress".  You wait for rounds before a shower because they might have some news. you wait for the platlett YOu  wait for the other closet of shoes to drop. YoU wait for the next does of meds.  You wait for a pint of blood because the bone marrow is not working. You watch more  Dark Shadows and fold more crane. 

During the waiting you worry.  Why is the bone marrow not working? What do we have to do to get out? What did we do wrong? How could this happen to our child?  Did we make the wrong/right decision? Or my favorite:  Remember that day you helped someone put Round-up on their yard and two weeks later you found out you were pregnant and now your child has leukemia?  

When you know how long the admission is going to be 80 days for transplant or 4 for chemo, it is very doable.  You go in, you know the drill, you know the goal.  Because you are headed into a certain specific direction it is survivable   This is what we have to do to go home. 

It is when you have no idea, no control, no sense of when it is going to end.  If there is a bug then you have to be in isolation   (Not even able to use the on-floor bathrooms. I decided not to say "pee on the floor") Everything anyone brings you has to stay in the room.  Everyone has to gown up. Your secret supply of real food has to be heated by a nurse.  You cannot even go to the family room and fill your water pitcher.  It is a fresh kind of hell.  250 square feet with a bed, a chair beeping things and lots of other crazy stuff. 

The minute you hit the room after an eternity in the filthy and more then disgusting ER, you are fighting to get out.  

The other part of this whole thing is they keep talking to us about Shangri La, Or the New hospital wing.  Even though the Cancer kids raise millions in funding and their care pretty much carries the hospital budget, they are in horrible outdated rooms.  They are awful. I don't think they have touched them since the 80's  Mauve has gone there to die.

 The bathrooms are closets, the fixtures are falling apart. Because they get to move into the new part of the hospital, they quit fixing things on the floor about a year ago.  There is a room where 4 people stay that has not had hot water for more then a year.  "too  much to fix it" I was told by the plumber to just use Purell.  Hello!!! anyone read all the information about how HAND WASHING is the only really way to go?

Oh, dear, see I still suffer from Long Stay in the Hospital PTSD.  When I read about someone being there and slowly  unraveling as they wait and pace and try to maintain their sanity, I start to go to that dark place. 

Okay, enough.  Just know until you have done one of those hard long stays, you will never ever understand.  But thanks for trying...... 

Sweeping

We are not a sweeping culture.  It is a relative simple thing to do but we are a vacuum, leaf blowing, Shark, Swiffer, steamer kind of people now. 

We have forgotten how to sweep.  I have these very clear and distinct memories of Lupe, Mary-Elizabeth's Mexican  Grandmother sweeping.  She would start in one room and move to the next.  Or she would go in front and sweep.  Every day, without fail.

I have been sweeping a bit.  It has a calming affect on the mind.   A purpose, a good result.  It allows the mind to wander to places unknown.  To disengage from the real world and to let it go where it wants to go.  Sort of like dreaming while awake.

I need to do it more.  Time to get back into the garden and prepare for winter, as much as we can prepare for anything.  Transitioning from one set of rules to another even if it is a bit rough.  There is always a "side affect".

Sweeping = sneezing;

Sweeping = calm thought and contemplation;

Sweeping = clean back patio.

Sort of like chemotherapy.  The bad is outweighed by the good.