Saturday, August 31, 2013

Here are the new Digs

This is her room. More pictures after the other girls arrive.   

Friday, August 30, 2013

Okay GOD and UNIVERSE

You are on Notice.   I'm leaving you in charge of Mary-Elizabeth.  She is in your care.  Don't fail me again!!!

Sitting on the Porch drinking Coffee

So Meb is sleeping. She is almost settled into her apartment.  We saw the accommodation people.  They were a bit scared of me for no good reason.   Then we met with the head of the health center.  No doctor will ever send her away telling her to go sleep.  We have hit every retail facility in the Spokane Valley and have another full day ahead of us.    

Sort of calm. A few rip tides. Some sneaker waves but all-in-all it is good.  

Tuesday, August 27, 2013

It was not my Fault

Okay, so I don't really love her as much as I could.
I have told on her several times.
I do play with her on occasion and I am truly upset when she touches MY toys.
I am very protective of her. 
If another dog sniffs her butt, I intervene. 
I try very hard to keep other dogs from playing too hard and rough with her. 
So when the housekeepers left the food waste in a place that Lily could get into it, I told on her.  I kept trying to get Mary-Elizabeth to pay attention.

I have been told I need to be more like Lassie.  I don't know Lassie and I certainly am not a Collie.  

I tried to tell Mom Lily was fine. I even jumped on the box where Lily was sleeping.  I was the one that barked at the box and made Mom open it.  I am often scolded and Bad Dogged when I bark so I kept it low key. 

Lily was fine. I am fine.

I am sad and upset right now because I can tell my true love Mary-Elizabeth is leaving.  She has the big suitcases out.  She keeps telling me it is okay but I have seen this before.  It is a bad sign.  I am doing everything I can to keep her in the house but she is quick.  She can escape me because I am only a 25lb dog.  I have been extra barky and I hope people understand.  It is a hard time. 

As always I will survive.  I have been told I have to wait to something called Thanksgiving.  I can wait.!!!

Sunday, August 25, 2013

People are just Stupid....

Yes, people are not very bright. 

I watched yesterday when the people all were running around.  From what I understand, they were confused about what time a wedding was supposed to start. 

Sally was sure it was 7:00.  She was having a great afternoon with her friend Anne getting ready.  All of a sudden Margaret came rushing in and announced the start time was 5:30.....  Crap......  words came rushing out of Sally's mouth in unusual rapidity.

They left the back door open.  I like when they do that.  I can leave and life is good.  I have lots to guard in the back yard and the front.  Despite my best efforts, things come into the yard.  The squirrels, the birds, the cats.  The front is worse,  dogs drag their people across the front of the house all the time.  They even have been known to pee on occasion.   The horror....  Okay. Back to yesterday.

Well Tucker and I hung out.  No food. No dinner, no supervision.  It was apparent we had been abandoned.  Maybe forever. Maybe we would never have our humans back again.  They were going to wedding and heaven only knows what that might be.  Maybe it was the last time they were going to be seen.

Tucker and I did the best we could.  We barked, we protected, we were on guard.  We slept.  We do a lot of that.  My favorite place to sleep is on Mommy's bed.  It has down pillows and comforters.  Prime sleeping place.  Tucker has to sleep in the living room because he is the oldest and I need my beauty sleep.

I headed into the bedroom and jumped up on the stool.  Only this time, it had the lid up.  I went in and the lid slammed shut.  

This was new in some ways, but not that new.  Since I was a puppy, people have put me in small confined spaces.  Sort of like an enclosed sleep cave.  Dark, cozy, a bit uncomfortable.  I went to sleep.


Heck I was doing just fine when people came home. They called me.  There was a fair amount of noise that went on for a couple of hours.  It has been my experience they find me eventually.  They asked Tucker where I was and then went to bed after driving around, listing me as missing and something about Craigslist.   Perhaps I should have said something, barked, whined but I was fine.

I settled in for the night.  But about 6:00 I wanted a drink and to go outside.  It had been about 8+ hours.  Tucker knew where I was and tried to wake up Sally.  She was having none of it.  Finally about 6:30 Sally figured it out.  I made some rustling noise, hate to bark too early she can be a bit of a grump.

She opened the box and squealed in joy. You would have thought I was lost or something!!!.

All I wanted was to go out and drink some water.  I also wanted to remind everyone I had not been fed last night!!!
 
 
 

Saturday, August 24, 2013

We are all waiting....

For something. 

It is results, the next scan, the next blood draw, the next e-mail, text, season to start, school to start, phone to ring.  It is always something. 

Some are better at waiting than others.  Some hit the wheel of the car at the intersection.  Some are snarcky with their mother because they are waiting to return to school. Some are waiting for friends to come visit or leave. 

I have found lots of life is lots of wasted time if you don't multi-task during waiting. I have spent much of my waiting time to work on needlepoints, a 1001 cranes, lots of letters.  Lots of seasons of the Big Bang.

Sometimes it is good to just sit with the waiting and make friends with her.  Just be mindful of how you are feeling.  Just sit and be with Waiting. Be ready for nothing, something or often times, mixed results.  It is often not enough to wait.  It is often not enough to pray or to ponder and try and figure out how to fix things.  Some things are just out of your hands.

My daughter often says I am not patient. She is a keen observer.  I am not patient.  I am very good at looking a situation over, evaluating it and getting ready to move on.  I am most often pushing and pulling rather then waiting. 

I work every day on just being mindful of what needs to happen, knowing stuff does not happen and just being here and now. 

I will try again today.
 

One Hip giving out and a fall can be overcome

Big rehearsal for tonight's wedding. 
Big fall on the cobble stones.
Gauze, triple antibiotic cream applied,
Dinner served
Life righted itself.
Child to the Four Seasons to spend the night with the bride,
2:48a.m. text asking that I start Grampa John's sour dough.
Hours counting down to the wedding.
 

Life is good.

Friday, August 23, 2013

Oh Dear...

Cancer World is full of sick children and adults.  It is a place of good things and many bad things.  It is most of all a place of Sadness for many.  Those who have cancer and those that know those with cancer.  Some win a reprieve only to be battered later.  People really really only want to hear the happy stuff. 

Today is not about us directly.  It is about someone we love.  

Alistaire had AML  she relapsed and then had a bone marrow transplant.  They just found .06 % of bad cells in her bone marrow.  It is exhausting to know what this family has gone through.  It is so hard to know this is back.   Recently Alistaire asked her mom when she was going to be a big girl. 

I have know words but Jai seems to have words left to let us look at Cancer World in a deeply meaningful way. 

http://conglomerationofjoy.com/2013/08/22/pummel/

Thursday, August 22, 2013

I declare we are unstoppable but a bit more humble.

We go like gangbusters.  ( I have to look up the entomology of that word.) We are unstoppable.   Give us a challenge and we shall overcome it.

I think about what has happened and what is ahead and It makes me have a headache.  I never get headaches but I do today.  I don't know if I have the energy to finish the first leg of what is turning into a Super Tri-Atholon.  Who thought running 345 miles, swimming the Atlantic Ocean in one day and biking from the North Pole to the South Pole was a good idea? 

My mom said I have to keep it together but sometimes the universe should be better a cooperating with me.  I found a really great cheap cruise from Vancouver to San Diego. I could get a train ticket, and have an airline ticket I did not use this summer because of Mom's surgery.  It was going to a great little get-a-way for less than $500.00.

It was sold out before I had my ducks in a row.  Another lesson in the need to jump when the opportunity arises.  So much has been going on for so long.  I thought a few days on the water would be good for my soul. 

I have gone before on these little cruises.  I spend most of my time out on the deck with a book and my thoughts.  It is so wonderful.  I can be with other people but the book and blanket is a great people barrier.  No one needs anything or wants anything or has a crisis or a problem or an appointment scheduled.   It is just time, I am a water person.  Water is what re-invigorates me. That is what I draw strength from when I am low on energy.  In the old days I could get on a ferry and just ride back and forth until my batteries were charged.  Now they make you get off, sort of breaks the mood. 

Looking at water is not enough.  I have to be on it, touch it, be close enough to smell it and feel it.  I have to hear it and be overwhelmed by it. 

My need for big water is much more pronounced now.  Maybe it was the way this hair thing happened.  It was very difficult to enter, for even a moment, the world of treatment failure.  Our skin that protects us and helps us move through the morass that is cancer world, is so so thin.  It is easily burned and bumped and scrapped and is not doing much of a job to keep us safe.

We will patch our weak barrier.  We will find the strength to keep on keeping on and then we will make it.  Just a lull, our blood sugar is low, we are dehydrated and the second leg of our run is ahead of us. 

Off to find some ice cream, almost as good as Water.


  

Wednesday, August 21, 2013

You Just Never Fracking Know..

Plan:

Go see Jerry and get hairs cut.
See Linsey to take care of the other unwanted hair. 
Jane to have hair cut.
Mary-Elizabeth to have a real hair cut.  Last couple have been just trims.


Seemed like such a simple pleasant outing.  Ha.... Got you. 
Jerry found a spot on the back of her head the size of a large apricot with no hair.  Round, bald.  I found it and almost threw up.

Now I know it is just hair.  It is just hair.  It is just hair.  My child is going to live. She is not facing another transplant or another relapse.  she is getting better every day. She is doing normal things she is great.  BUT

Her hair is a sign to her she is getting better. It is a lovely color and a wonderful texture and it growing like crazy and she feels normal in it.

She has to live with her chipmunk cheeks, endless huge stretch marks on her skin, deterioration of her large joints, a dead bone, problems with kidney and liver function.  Shall I go ON....


 I look at it and it almost makes me throw up.  What a shock. How did that happen!!! Must be my fault like most of the world's problems. Call Clinic, get appointment for next day.  Hate when it is next day, in the morning and not a week away.  I don't care how much they love us, this is never good.

Someone looks at it and announces Radiation SPot.  The lovely permanent scar left somewhere on your head where they zapped the hell out of you with radiation.  (Now remember, the effects of radiation don't all show themselves for 3 to 5 years post radiation. So we all know "stuff" can happen and often does.) 

I thought about that and didn't buy it.  It was a new event. Something had happened that was new or different.  So what was new?  What has changed?  PREDNISON taper.  The drug addicted Girls were being sneaky about asking for more.  They were not working on the stomach or the skin or the liver, no, they are going for something different and are being sneaky about it.   Hate sneaky... Just come out and say it or do it.  Don't secretly make a bunch of hair fall out!!!!!!!!!!!!!!!!!!!!

So we go. We see Dr. Jess Pollard.  She looks and she says, "it's not fungal and it is not radiation spot.  It is GVHD.  I am calling Dr. Carpenter."  I suggested she remind him that if I fail to receive the answers I want, I will be taking back Jam.  

She catches up with us and pronounces:  End of taper until Mary-E sees Dr. Carpenter at the end of September.   My poor beleaguered child just cries.  She just cries. She is at the end of it all.  Why can't she get a break.  She has done nothing to the universe but roll with the punches and do what they ask and take her meds and keep track of every bit of food and drink and everything on her skin and the list goes on. 

She is packed, she is geared up, she is ready she is sitting on the launching pad and wants to go.  The count down has begun. 

My reaction..... I'm just angry.  I am so fed up with all of it.  I am busy planning my re-entry to work.  Meetings scheduled, people to call listed, contacts to pursue, lunches to schedule, I am ready to return to work.  This just draws me up short.  It is the universe not wanting to let go of us.  I think we should be done we have paid our dues.

I start to rehearse how I explain I am not going to be a reliable person.  How I am going to need some flexibility, and be able to work remotely.  How I am experienced at having to drop everything and switch rolls a dozen times... It just makes me so mad. 

Deep deep breaths.... I need to take deep deep breaths.  

Dr. Carpenter did decide to continue the taper.... He has bonded with Last of the Berry Jam.  He knows how bad it is it be Jamless....

So end of the long and complicated story.  The taper continues, a new hair goo has to be put on and sit for 4 hours every three days. We have to see if SS (shiny spot) grows. 

We both can live with that and it is expected we will go on our merry way happily rejoicing I the fact she has not relapsed again, or her leg has fallen off or her third eye has not emerged.  No for awhile we will be angry and disappointed and frustrated and scared, mostly scared.  Did I mention scared. 

Hey I finally was given Chickens!!!!
 



Sunday, August 18, 2013

I am from Idaho.... and it is burning up

again!!!!

It is so weird to see nature re-shape places you know and love.  When I hear of fires in these oddly beautiful places it have a physical reaction. 

 I was born in Idaho, was raised all over the country and then returned as an adult to teach and then learn to be a lawyer.  I am "from" Idaho in many ways but mostly in my love for its beauty. 

It took me lots of year to fall in love with the high desert.  To look out over the dry sagebrush covered hills and wonder at the majesty of the antelope or coyote or the jack rabbits or the burrowing owls.  It took me a long time to bond with it. 

It is breaking my heart to watch it burn. Lots are worried about the houses.  I worry about them but also the rest of what makes it a place to put the houses.  The gently sculpted hills covered with the remains of the volcanic explosions sage brush, dozens and dozens of different kinds of sage brush. 

It is now burning the childhood hills of my mom.  She roamed the hills hunting for rattle snakes and other such treasures.  Grampa hunted for gold and deer and elk and fish and time with his family.  

While I look on and wonder and ask why, I know fire is part of what makes it re-grow and regenerate.  It is sort of like loping off parts of a tree.  It will come back with great vigor. 

Here is to the sage covered hills of Idaho.



Working on Normal... But failing in weird ways.

Universe is all out of whack.  We keep putting on step in front of the other but still it is all weird.  It seems the same, we are doing the same sort of things, we are making the efforts but still..... off.

Mary-E is getting ready for school.  This is more like the first time she went.  We are old hat at this now but still it is different.  Sort of Alternate Universe type off.  She has packed the "stuff" the Kitchen Stuff, the bathroom stuff, the bedroom stuff and then there is the "Stuff". 

The special "stuff".  The creams, the meds, the small set of drawers to keep it all organized.  Granted she is down to only one page of meds but they are powerful and magical and major potions.  They come with pages of instructions and lots and lots of concerns.  It takes a team of specialists to handle them.  When she had a cough and we had only "citrus" flavored cough drops, it took three pharmacists to determine if she could take them because she can't have any Grapefruit. 

When we get to Spokane we have bunch of appointments.  Dream, Doctors, and so forth and so on.... 

I am so reminded of the Ray Bradbury short story.  The man goes back in time to hunt a dinosaur.  He steps off the path and accidentally kills a butterfly.  He returns and the world is slightly off. 

We are slightly off.  Best Example.  My car is parked in a clean garage.....  

Saturday, August 17, 2013

And we think we have problems.

http://www.inciweb.org/state/13/

If you click on this link you can explore the new and improved fires in Idaho. 

We need to pray to the rain gods and soon.

Friday, August 16, 2013

Sometimes you do have to just let the Universe Play with you for awhile.

It is good that sometimes the pencil pushers don't win.  That is what happened with Mary-E.

For several months we had worked on making sure Judy Flumenhiger (not her name but it is such a fun one that I will be using variations on a theme for the next year.) took over her care during her Spokane time.  Dr. Judy was the one that helped us during the relapse discover and getting her back to Seattle in the nice plane.  She was the obvious choice in Spokane. 

We would have found a "regular" doctor  for her if she was not on 16 complicated medications, still tapering and not "there yet".  I was surprised to hear they wanted her to move all her doctors and change medical systems three weeks before she returned to college.   She does not need a doctor she needs and educated team.

They include:
1. Endocrinologist
2. Hematologist
3. Orthopedic back guy
4. Oncologist
5. Gastroenterologist
6. Ophthalmologist

and several other "gists"

Nightmare, Nightmare, Nightmare.

But.... sometimes if you wait and let the system work and spread enough jam around a phone call comes:

This is Dr. Hadelin( Doctor Tacrolomis). We think it is a very bad idea for you to get voted off the Island right now. We were able to get you approved for another year at Children's.  We will spend this next year making sure you find the right doctors and educate them.

Note to Self:

Prayers answered.
Breathing helps.
There is a God and I might take him out of the dog house soon.



Thursday, August 15, 2013

General Doctor Confusion.

So Children's wants to kick Mary-Elizabeth to the adult world.  Seems like a huge and awful scary step.  More for me than for her.  I love the way Children's coordinates everything and adult world is a crazy awful mess.  They don't sedate for bone marrows or IT's they don't even give adults Ports  and Hickmans.  I think it is because adult cancer is often caused by adult choices and the insurance companies want to make adults suffer.  "You smoked, you don't get to have an easy time with cancer. It is your fault you lived so long.  Die or suffer it is your choice." 

To complicate matters she is returning to college.  Certain types of doctors are not in Spokane or of the same caliber as the Seattle bunch.  But until  you have tried to see an endocrinologist or schedule an appointment for an adult hematologist you don't understand the problems.  As I said, Adult medicine is a drag.  To make it worse, the new doctors have no idea what has happened to her or understand what is involved.  Nightmare....

Okay Sally Breath.... just breath. Lots of people have to return to their communities and educate the general medical population.  Someone is Spokane will be able to figure it out.  Someone will write the prescriptions and some pharmacy will not screw up the names.  Evidently one normal pharmacy dispensed Tacrolimus instead of Sirolimus because they sounded the same.


Breath....

Wednesday, August 14, 2013

10th Year begins.

10th year begins.  10 years ago today I received a call at about this time from my friend Judy.

"Sally Children's Hospital is trying to get ahold of you." What I did not realize then, that I do now, is that not only did were they trying to get ahold of me.  They were never ever letting go.

We had entered Cancer World.  9 full years of being here and no one has shown me any of the escape routes.  We just wait and wait and watch and ask and beg and wonder.  We are finally just resigned to this place in our life. 

We are not dwelling on it, we are not focused on it. We are just moving through another part of the maze that is our world.  Mary-E continues to pack and prepare for her return to Campus.  She continues to worry and fret and wonder how it will go. She imagines horrible things and fun things and normal things. 

I wonder how it will go.  It is weird to be sending her back to school and out of my life on to the road of independence.  While most my peers are settled into daughterless lives and the new relationship, my child was well on her way to an adult life and then was rocketed back to dependence and childhood.

When your child is in treatment, they revert.  There are days they are 2 years old.  Cancer strips away the years of personal growth and maturity.  It takes your child back to the beginning and you begin again.  A bone marrow transplant is a new life that must grow and develop and it is a new beginning. 

So ten years in we do it again.  We start again. I let go, she fights to go but wants to stay. I push and then I grab.  It is a very interesting dance.  We have done it before, we will do it again.


Tuesday, August 06, 2013

Tunnel Sighted

WE are almost there.  It helps when a load goes to the dump, several to Good Will.  Stuff keeps falling out of the cupboards and at the back of drawers.  Decisions still have to be made but it is getting there. 

Two young guys with strong backs can make a difference in a hurry. Two good painters can clean up a 7 rooms in a flash.  Three lawn guys can make the back yard look wonderful in a flurry.

All good.  Now if I could just find a Fitbit charger life would be good.  It seems to be hiding. 

I am heading to Mom's for another look.

Sunday, August 04, 2013

Thing I should have known

1.  Every Family Fights:
There is always something.  Some issues people need to work through.  Often the real issue is with a parent and the parent is gone. So the issues rear their ugly heads and the anger and disappointment and frustration are focused in another direction.  IE Sally is a bad person and awful Sister episodes in this process.  

2.  Be careful you can say things to each other that will forever damage your relationships.  Especially if one party has bottled up all the frustrations and anger for years and even decades.  

3.  There is always more stuff hiding in the corners but the 9 gold coins and the 1 carat ring are not anywhere to be found.

4.  Be prepared to find your dad's shoes. And to cry just a little bit.  

5.  Be very clear about what you want.  If you ask for the Walnut Table that holds the Peacock lamp.  Make sure you use the words " and the Lamp".  Then if you see someone packing it and taking it it is always best to say something and not just take the Finial.  Finials are easily replaced.  Relationships are harder.  

6.  It is okay to snarl at the guy at the yard sale when he offers 25 cents for a 25.00 item.   Just as it is okay to sell the WWI lead solders to a small boy for a 1.00.  
7.  Be prepared to feel odd about leaving your mom at a new home. Be pleasantly surprised she quickly finds new friends and has no time for you.  
8. Be prepared to look down the empty hallway at the former family home and realize it is now just a house. Enough of your life stuff is gone and all of a sudden it is not a home but a place with walls that need paint.  
9.  Home is more than walls and books and a favorite coffee cup but I am not sure what it is exactly
10. Take a few minutes to stop and read your Great Grandmother's letters,  she has wisdom to part.