Points in Time.

1966:  Clock arrives

My dad was a GP in the small glen of Spirit Lake, Idaho.  He had patients that paid him in raw milk, fresh vegetables and wild meat. 

He made house calls. In one house he admired a very stately grandfather's clock.  The clock was German but had been transported from Australia by the couples Merchant Marine son.  Within the year, a clock arrived at your house.  It cost 300.00 and was made in 1883ish.

We moved from Spirit Lake to Dalton Gardens and then to a house on Prairie Avenue.  Each time we moved the clock moved and it had to have a visit from Mr. Clark.  He was the owner so a Coeur'D Alene Jewelry story that is still there.

1974 Clock Moves to Michigan

Dad was fed up with how Malpractice insurance was handled and up and quit being a doctor.  He did some looking around and we ended up in Midland, Michigan.  The Clock moved there.  We joked about having Mr. Clark flown out to Midland but then found someone to set it up.  The clock was pretty happy but the case was not.  Michigan was not a place for wood.  Humidity was not kind to the case but it survived with a few cracks. 

1978, Clock moves to Walnut Creek California

The clock was happy in the California fresh air and heat.  Mom was always way more apt to turn on the air conditioner than the heat.  Life was good.

1981,Clock moves to Sarina Ontario Canada aye?

As I think about it, I don't remember where it sat.  He has to have an interior wall, a place out of the sun.  The next move was to Storage and not Switzerland.  Maybe there were Visa issues?

1986  Back to Michigan.

And to a new clock maker.  The folks had decided it was time to do some much needed work.  Re-gilding, re-stringing.  The clock lived with the guy for more than a year.... 

Clock guys are just weird.  They fall in love with the clocks almost like mistresses. 

1995 Back West, Eugene Oregon.

Dad retired. Mom found a house.  Mom did not measure the ceiling.  Upon arrival, unpacking and setting up, it was decided punching a hole in the ceiling was not a good thing. 

Guess who had the only ceiling that would accommodate the clock...... yeah.

October 2010

Mr. Clock was very unhappy.  He would stop, he would chime at the wrong time.  He would just have hissy fits.  So we called Roger.  Roger is another Mr. Clark. He took the clock. 

September 12, 2012

The clock returned.  It was a good time to return.  It seemed he needed to rejoin the family now.  Something to mark our new transitions.  Mary-E back to the books.  My return to a bit of school, both as a student and a substitute.  An empty space filled.  A bit of family returned. Hopefully to a normal house.

Someone else's new diagnosis, our version of 9-11

Yesterday someone shared a notice of a newly diagnosed family.  First grader, at Children's, Family well Supported. What to do....  Child had a long chronic cold, will be a Seattle Children's for a while. The family has a meal service set up, they are adjusting.....

Oh, my it brings it all back all so so fast. 

For a few moments the original diagnosis passes by. Confusion, upset, concern, panic, fear, despair, and then more confusion.  How did I handle it? What was I needing in those early months? How did we survive? What would have made it better? 

 I know it took me a long time to figure out how to receive from other's without guilt. It took a long time to put into words what I needed other's to do.  Everyone wants to  help. Everyone wants to something.  No one wants to do something wrong.  Do we call? Do we visit? If we visit do we stay an hour? Do we take food?  Should we send balloon, cookies, flowers, a new puppy?

The fact is they have just had some of the worst news of their life, are in total shock and are just trying to get from one set of rounds to another.  They are learning about counts, are ecstatic that their child is not throwing up and that the hair is still their.  They are grasping on to any little bit of hope available.  They are telling their friends "it is the good kind of childhood cancer". 

I can remember when we would go for a walk on the floor or go to clinic and Mary-Elizabeth would say, "They are new".  I would agree and we would continue.  We each would enter that corner of our  brains that those first memories reside.

9-11 is seared into the memory of many.  Some of us still remember when John Kennedy died.  Some when John Lennon was shot.  Some when they got a call from a friend staying at their house, asking that a call be returned to Children's. 

We all have these dates and times.  Some universal, some personal. 
Hoping for memories of good things.

 

 

Might be time to Trust in Health Again.

Cancer World Mom's are a suspicious group.  We are pretty hardened by the various things that have befallen us over the years.  The disappointment and sadness when our children are sad about not being able to swim or go to school or have ice cream because they have that disgusting water reservoir they use to hold the scoops.  Unexpected fevers, side affects caused by medicatoin given for a side affect, a child that gives herselve 7 shots a day, a ANC that is 195 and keeps you in the hospital. 

You are always on guard.  Never a moment of true restorative relaxation.

Do you wash your lettuce?
Do  you wash your hands after using the bathroom (at least one server at Portage Bay does not)?
How long has that roasted chicken been in the box?
Is that Feta? and has it been cooked to 160 degrees?
Are you feeling all right?
How is that ankle, finger, bump on your abdomen, weird tingling feeling over your left eye?

I expect that I should be able to just step back on to the fast track again. I want this to be something that is behind us. I don't want to be in this weird space.  What I am forgetting is that it took several years to begin to believe things were all right and we had a pass to rejoin our life. 
 
"Things are great"was taken away a  year ago.  A phone call, a few frantic calls to try and make the fear and doubt subside and then the  sick, horrible realization it was BACK.

Now I seem to be caught in the whirlpool of doubt and fear and anxiety.  Each time I have stepped out and tried to get back on track, something has happened.  Short trips have resulted in hospitalizations. Scheduled lunches, headaches came.  Planned adventures and a schedular calls to change the date or time or cancel or set a new appointment.     I have just now started to put somethings on the calendar.  Even when I do, I never ever trust I will be able to follow through.

As Mom's we believe that if we are not here and on top of every single moment, there will be a disaster.

I am very good at not being a dreaded helicopter mom.  Mary-Elizabeth spent months in Mexico with her Grandma starting when she was 3.  She flew home by herself when she was 5.  She took the bus from school to Downtown on the #10 when she was in 5th grade. She was not over mothered by any means. In fact many thought I was very careless in my care of her. 

So as she sits and works endlessly on her two classes, I have to let-go and learn to trust again.  I need to find a job.  I need to really start to pay attention to me. I need to trust I will have my daughter back, to stay. 

Maybe if I chant "she is going to be okay"  a thousand times a day, it will happen. 

Here is to learning to trust again that"she is going to be okay". 

"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"

More About Mario.

Several months ago Linda, Mario's mom thanked his community.  She was so hopeful.  Reading her letter made me realize how much these transplants are a necessary struggle.  The media loves the happy stories.  This is a real story.  One of his friend mentioned he was in a better place.  No one should have to go to that place before they have finished school, found a career, met their true love, had kids, fought over hair styles, learned to appreciate their parents, found a house, paid a mortgage, gone on a vacation, read a fabulous book, appreciate an endless number of sunsets.... 

Letters - Guzman thank you

April 19, 2012

Mario Guzman was 18 years old when we were told he had leukemia in the blood. It was August 2007, he was starting his senior year in high school. He had to relocate to Seattle for treatment. It was two and a half months at first, then we came home for two months, then it was back to Seattle for another two and a half months to continue treatment. He did go into remission after 13 days of treatment. During this time he had multiple surgeries, bouts of nausea, loss of hair, and lots of chemo along with medications. He came home in April 2008.
August 2009, we received a call from the doctor in Seattle, the cancer was back, this time it was in his spinal fluid. He had an ommaya reservoir placed just under his skin on his head. They would shoot chemo through there. At this time we had to relocate back to Seattle, this time it was for eight months straight. My husband and I took turns staying with him for four months each. Very thankful to our employers for making this possible. During this time he had lots of stays in the hospital for high fevers, infections, again lots of chemo, and medications. Again, he went into remission and came home in April of 2010.

In July of 2011, he had his last chemo treatment. We thought “This is it, he’s done, now we just have to get through the five-year mark” when we again received a call from the doctor, the cancer was back, again it was in the spinal fluid. So again my husband took time from his job to relocate to Seattle for treatment. I relieved my husband in January 2012. Mario had a double cord blood transplant on Jan. 23. Everything went well, after about a week and a half, he felt the effects of the transplant. All he wanted to do was sleep. They put him on hydration fluids, fats and lipids, because he got mouth sores. He retained lots of fluids. At one point he had 12 to 14 pounds of water weight. He developed GVHD, which is normal for transplants. It is where the body starts to reject the transplant. He is on five medications alone for the GVHD. At this time I have 16 medication bottles for him. On Feb. 13 he developed BK Virus, which is where he urinates blood and clots. On Feb. 14, they found he had Adeno Virus, which is in the sinuses, and put him in isolation. He couldn’t leave his hospital room. He was finally discharged after 81 days, of which 51 days were in isolation. He has doctor appointments two times a week, labs every day, and he’s been getting platelets daily, even while in the hospital. For some reason, his platelets will not stay in his body. So we’re at the hospital daily for at least five hours a day.
We strongly believe God has healed Mario. We have had a lot of support from family, friends, our church family and this great community. We have felt the generosity of the people from Quincy and surrounding areas. We are very grateful to everyone who has supported us through this time. It has been a lot easier to get through knowing we have people in our lives who care.
­— Linda Guzman (Mother of Mario Guzman)

Mario Guzman.......

What do I say? This is the message I received yesterday: Hi this is margarita, im jut calling to notifiy you that unfortuaelty mario passed today at 3am in the morning. (Margarita is the mother of Luis and her lack of English made it difficult for us to speak but she texts like crazy.)

Damn it, Damn it, Damn it.... Mario was one of Mary-E's transplant buddies.  He was a big guy, tall big, always a smile, talked with everyone, kidded with everyone.  He was a great guy.  Lived in Quincy. Has a great mom, Linda.  Margarita, Linda and I lived together for two and half months. We talked, compared notes, spent hours and hours not talking because we were with our kids. 

We learned a few weeks ago that Mario was in ICU bleeding from his lungs and on a respirator.  It has been a few weeks. Last we heard he was off the respirator but we knew he was still in ICU.  I never thought that "off the respirator"  was not a good thing.

This is Mary-Elizabeth doing Circuits and not knowing. She now knows. When I told her I was going to the funeral, she was very firm:  "I am not!!! This is why we don't talk with each other.  We know not to get attached."

They worry about each other from afar. They want to connect but know in Cancer World your friends don't just go away, they die. 

The moms are much more in touch with each other.  We all hate that the hospital won't give us information about other kids because we know the Moms don't have the energy or ability to do so.  We want to help each other and do something and we are often stymied.

We are always looking for information for lots of reasons. 
Did we do something wrong?
Should we be worried about something else? What is working for them?
What is he eating?
What is she drinking?
What is different about his identical double cord blood transplant? 
Is this our future? 
After all of this will we end up in ICU?
Did it matter that.......?

We are always comparing notes and hoping that if it is good, our child is doing better.  If it is bad, we try to figure out how are child is not in the same situation. We are like competitive moms on a play ground with our kids.

But in the end, we all fear this the most:  The death of our child.

Nothing prepares us. We just feel so helpless. We want the happy cancer story. The one the news always is so willing to tell.  We know the truth. 

We come into this knowing that only 40% of these children make it through.  Knowing and then realizing are two very different things.

Deep into the Corners

In Cancer World the docs are always on a hunt into the recesses of the body for lingering cells. 

They look in the bone marrow, the spinal fluid, the testicles (if applicable).  They are always looking.  They say that cells hang out there and must be tracked down. 

Now Leukemia is not like solid tumors, stray cells don't float around, attach and then find a new place to land and grow.  The cells they find are just evidence that somewhere in the bone marrow, a cell is being bad. 

In Mary-Elizabeth's case the sleeper cells did not show themselves for more than 7 years.  They were shot down and suppressed and waited.  Waited and Waited and then one day they came out to play. 

 I have theories.  Stress, potato chips, bad school food. Lack of diligence, too much diligence.  Cosmic rays, too much fresh air, not enough fresh air. Too many pesticides, not enough pesticides.  It is all a mystery. 

I guess cancer is sort of like a hornet's nest.  It secretly grows in the Rhododendrons in your back yard until one sunny day when you are sitting on the back porch of Carolynn Baker's house and a raccoon climbs up and decides hornet larva would be a great afternoon snack. 

Well I have not been very diligent at my house, especially in the kitchen.  Now that "school" has started, I feel the need to return to the kitchen and really cook.  When I turned around today this is what I found. 

Oopsss.....  Kitchen Faeries are on Restriction until we find the corner.

I do this weird thing in my head.

I do this weird thing in my head.  I have always done it.  I replay events and dates and times.  I can place myself back to the exact moment of an event.  I step out of my body and I see myself sitting in front of the television looking a the huge full moon at the exact moment Neil Armstrong is taking his first little bounce.

We are in the Relapse Month.  The time before the calls and panic and life flights and you know all the rest. 

Because of the new face book page, I have found a family that has just started their stay in Cancer World.  I started to read their blog and felt like I was visiting an old friend.  The stages are so predictable. The frustration the anger, the feeling of loss, the appreciation for all the help. The plea for blood donation.  The lovely 9 month old that has the puffy cheeks and already knows the difference between nasty medicine and oxycodone. 

I am going to quit worrying about this today and not do a replay.  I am going to figure out how to access the GET account to pay for $5000.00 in tuition.  Oops did not see the need to do the FASFA application before June 30th.  I also have to find the original of my teaching certificate.  Has anyone seen that file????

4 More Months..... and Then.

WE will look back in wonder and thankfulness.  We will thank our lucky stars and then Meb wants to travel.  She wants to do more than sneak off to Renton or Maltby or..... fill in the blank.

It should be a grand adventure of some sort.  I am hoping she can convince some of her peeps to do a weird road trip of some sort.  A tent, a map, some cash a car and some travel.  Maybe to see the world's largest ball of string and the Corn Palace and a tornado and the list goes on and on.

Hopefully I will be tied down and working at some great soul building job. 

Having a child with cancer for the second time makes one wish and hope for so so much yet sometimes just the little things.  She has taken over my desk as she settles down to study and take two classes from Gonzaga. 

I am going to settle down and take care of myself for a while.  It is time.

Our Circadian Rhythms are not in Sync with the Rest of theWorld.

September 2nd 2012.  How exactly did that happen?  It just happens.  We are a bit mixed up this year. 

The sunflowers have not bloomed.  Grampa's beans did not thrive, not really.  We did manage to have other things happen. A huge undefined squash just grew.  Some potatoes were recently dug from the garden. The Jays have been added to our bird list.  Lots of Jays. 

We are just a bit behind.  I don't mind behind most of the time but it is just not like me.  Maybe I am finally catching up on the important things.

I made it to the 40th Reunion of my high school class.  I have found, with the help of another cousin, some family in Tacoma. I am utilizing social media to help move the hospital forward on the food issues.  Do visit Better Food Please Seattle Children's Hospital on Facebook.

As things settle down, and worry steps out of the way, there is time to focus on other things. The sunflowers are about 6 feet tall.  Once they hit a certain height they are start to do more than grow, they start to follow the sun all day.  Somehow at night they know to move to the east.  This is something I have observed before but in the hassle and bustle of the last few months the little things slip by without notice.

So.... yesterday St. Anthony (saint that returns lost things) returned my favorite lawn sprinkler.  I went out to change the sprinkler and noticed the hummingbird flying threw the water spray.  She then landed on the small pine tree and began to let the spray give her even a better bath. 

The moment lasted only a few seconds but It was enough to remind me to watch, listen, observe and appreciate. 

Dreaming and Dreams and Reality

I have always been an avid dreamer.  I dream in color.  I have had way too many dreams come true.  I often wake and go back to sleep and continue my dreams.   Weird.

Last night I had "one of those dreams" .  I was talking with someone and they were telling me to stop worrying and to get back to work and I was over mothering my daughter.

From that deepest and most scary place I began to recite the odds to this person.  How many kids develop other cancers, how many kids have other health issues, how many of the Transplant kids don't live more than 5 years post transplant.  It went on and on.  I was screaming to the poor person that only only 40% make it. 

I woke up and was just in a panic.  It took a while to go back to sleep. I finally drifted back to sleep after I reasured myself how good she is doing.  Her numbers are good. She has more hair. Her skin is good. She is good. She is progressing. She is going to make it.  Really Make It.  There will be graduations and boy friends and new jobs and cars and apartments and heart breaks and sucesses and struggles and...... there will be a life. A real life, not a dream life.

Gonzaga has come up with another class for Mary-E.  She is frantically ordering her books.  She is making note books. She is reading for fun. She is looking for the correct desk that will make life perfect. Life is so so good. 

 We will return to this place and of course hair.

 

Dreams are only dreams.  They need to be there to only process our fears and help us remember we have them.  But we live in the real world.

The Jays.

 

 

We have more then one kind.

 

How exciting is this?  This is so cool. 

 

 So just we are all straight.  Steller Jays are named after a guy named Steller.  They have the top notches are really noisy and love to hide food.  They are very shy and only recently  have come to the feeder. 

 

Scrub Jays are a western, non-migrating bird and not a jay.  They are related to their darker and larger brother the Crow.  They are wicked smart and are able to remember where they put all their food.  They love the peanuts and chasing the lesser bird and much prettier cousin away, the Steller Jay.

 

I love my mornings at my computer when they come and squawk at me until I give them some breakfast.

 

Nice to have a few quiet mornings.  Only one appointment today and then lunch with some friends. 

 

How Normal is that?????

 

Loving Gonzaga today.

She is sort of going back to school. 

Because her immune system is so compromised  and she had no immunizations because she can't have them because she is taking something to keep her immune system compromised.....  see what I have to live with everyday.

She can't go to school in a classroom.   So everyone says, "Can't she take on-line classes?

Oh yes she can but college is not on-line classes. It is planning dinners for the neighbors, watching Big Bang and eating pizza with the boys.  It is late night study sessions that turn into tired hysterical laughing sessions.  It is trying to wake up your roommate for a class or going to a movie or bra shopping.  It is so much more than going on-line.

The biggest obstacle has been her course of study.  She is in the Engineering Management program.  Classes have to be taken in a certain order. 

Yesterday she heard from her advisor. They are working on developing a way for her to take her circuits classes on-line.  She was hesitant but was so happy once those fears were overtaken by excitement.  She also found one of her really good camp friends is going to be attending SPU and won't be "leaving" for college.  Anne has a car, loves Mary-E and there will be a chance for some of the very necessary social pieces of college.  Sort of.

At this point we love Sort of..... We totally love Gonzaga.

Antys, Anxious, Jittery, did I mention Antsy

It might be the Death Wish Coffee. Or it is just starting to get to me. 

We, why do I say we?  Let's just say, the days are running through my head.  The first call, the flight over, the night in Sacred Heart Hospital. The first admission.

I realize we are 7 months into the post transplant period.  Two hospitalizations, one blood clot and some GVH and here we sit.  Our 9-11 appointment with the GVH doctor was changed.  I am sure we are going to have to have another discussion on how to taper  prednisone/hydrocortosone since the taper anticipated the now canceled appointment. 

Oh, dear.  I am watching the affects of the drugs on her body and her spirit and it is making me crazy.  Her skin has huge stretch marks in places no one ever thought they could be.  Her body is being marked forever with scars.  I am afraid to even think about what this is doing to endocrine system, her bones, her spine, her.......

Okay.  I will stop this now.  I will clean off the dinning room table because it is time to start entertaining again.  Time to pull out the good dishes and using them.

Better Food Please

http://www.facebook.com/sally.a.lanham#!/BetterFoodPleaseAtSeattleChildrensHospital

I started a Facebook Page about the Hospital Food at Seattle Children's Hospital.  Spread the word....

The sun is up, I should walk the dogs.

The Plan:

Water the yard.
And feed the birds.
And floss my teeth.
And fill the yard waste bin with something I don't want.
And do some more desk clearing.
And do some laundry and hang the sheets out to dry.
And rake up the irritating pine cones on the side of the house.
And do some gardening on that side and maybe plant a tree or two. 
And decide what outing we can do today to get Mary-Elizabeth to do some more walking.
And call my mom and tell her about the newest news on Featherville Idaho.
And look on E-bay for Ice cream forks lest I ever return to the 1988's.
Contact my newly found Barnes Cousins and send them some pictures of the family and plan a mini-reunion.
Go on an archaeological dig and find more pictures in the basement and everywhere.
Talk to friends.
Figure out something for dinner.
Finish War and Peace
Finish the two quilt backs so I can start a new one. 


Reality:
Some watering,
Potatoes dug,
The yard waste filled a little bit,
The Russians are almost to Moscow
My cousin Jane came over.  She is moving to Seattle and lots to say.
Trip to Snohomish in search of a desk for Mary-E
A lovely lunch at a Thai Restaurant,
Lots of walking around a cute little town,
Child not exhausted and would like to go again.

Sometimes the things you end up doing are much better than the Plan.

 I think the Spaghetti Nebula just happened without a plan.

Faulkland Islands, Trinity Ridge Fire, Double Cord Blood Transplants.

What?  Are you crazy?
Do you have a screw loose?

Don't you remember January of 1982?  Some Argentinians landed on the Falkland Islands.  They were not welcome and the Brits sent a bunch of ship to "defend the empire".  We waited for  three weeks for the ships to get there. 

It was so so weird to sit around and listen to the news about how they were sailng and where they were going to engage the enemy. For those of you that forgot, the Brits won, lost a couple of ships.  200+ Brits dies and 650 or so Argentinians.

The Trinity Ridge Fire is taking forever to arrive at Featherville.  Yes, the fire people named two fires starting within a day or two of each other Trinity Bridge and Trinity Ridge.  It is not fault my spelling is off sometimes. 

More than a week-ago my Cousin Judd was told to go to his cabin and take all of his cherished possessions with him and get out.  The fire was coming.  The fire is still not there.  They are waiting.

Mary-E had a double cord blood transplant.  And we are waiting.

It is the not knowing when the waiting will be over. 

I know that during the Falklands, we were in law school and it was January and we were deep in our books.

I know those from Featherville have been trying to figure out what to do.

I know I have been trying to be busy and doing positive things with my time. 

Sometimes the waiting gets to me.  Today my friend Liz took me to the Pacific Northwest Alaska Quilt show in Tacoma.  Sometimes waiting is a good thing.

Sometimes things just GO

It's not right or wrong, it just is.  All day, we spent all day at the clinic.  No way around it, and someone asked if spent a lot of time waiting and we really did not.

In at 10:30:  Back into a room.
Heat the child
Look for vein that wants to cooperate
Look some more for a vein that wants to be invaded.
Look again.
Look yet again.
Find the vein, Mom looks away.

I want her to have a port put in because I cann't stand the pokes but then I don't think that is a reasonable request.

IVIG, 138 minutes plus a flush or two.

Then a doctor appointment.  Never were we bored or kept waiting, not really.  It just is how the day goes.

I am practicing the "nature, time and patience" chant a lot.

I spoke to Michael Reinfelt today.  His daughter had a transplant many moons ago.  He and Susan came to visit us during transplant.  He told me it took about 4 years before life really settled down. 

I guess we have a bit of a way to go.  I can do this.  She can do this.  Sometimes I just assume this is going to over and done.  We have had no big set backs, no big serious issues, no ICU, no drilling of bones to stimulate growth. 

WE can do this, we can do this, we can do this.  Said three times while twirling around.

Now if I could just figure out why I have the urge to buy wine and make Muffalletta sandwiches.

Fires are burning.

If you are from Idaho and have lived in Southern Idaho where fires grow to thousands of acres in a few hours, you appreciate the power of flames.  Feather ville front porch.


Lots of fires happen other places than Seattle.  I drove by Cle Elum an hour before they began understand and fear and flee fire.  

 I have a cousin that is waiting for his house to burn in Idaho.  His house is in Featherville.  It is such a feeling of dread, knowing it is coming, hoping the wind with shift, hoping it will be okay but resigned to the fact it might very well happen no matter how many fire trucks are sitting in the town ready to defend.

 Everyone is very aware of dread and fear.  What it is like to know something is going to happen and we can not stop it.  It creates that pit in the middle of the abdomen and waits and grows and nags.  It does not hurt but it makes you aware of something you are ignoring and can not fix.

Tomorrow is one of those days for Mary-E.  She has to have various blood draws and some IVIG (Immune Globulin).  She is dreading the insertion of the IV and then the infusion.  IVIG can cause some serious allergic side affects.  I hate each time she has to give blood and get poked.  It is ugly.  Her body is so so tired of all the assaults and shows it's anger by creating really really big bruises and lumps.  I am grinding my teeth just thinking about it. 

I called Cousin Judd and he was driving a load of something to Montana.  He had been to Featherville and had taken out a few items and said good bye to his house.  He was keeping himself busy until he heard the news.

I think I will find a project, or maybe make a list of projects.  Something to keep my mind off of tomorrow and of course all the other things I know could come or not.

Freezer needs to be defrosted
Cupboard needs to emptied, sorted and cleaned out.

Somethings even surprise me.

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Defining where you are and where you come from...

Facebook wants to know where my home town.  I don't have a good answer for that question. 

I have lived or my parents have resided in the following places since my birth 12 years ago. ( I adhere to a different calendar than the rest of you.)

In Chronological Order:

Born in Council Idaho
Riggins Idaho
New Meadows Idaho
San Antonio Texas
Parma Idaho
Moscow Idaho
Alexandria Virgina
Washington DC
Ogden Utah
Spirit Lake Idaho
Dalton Garden Idaho
Hayden Lake Idaho
Caldwell Idaho
Oxford England
Midland Michigan
Mt Pleasant Michigan
Dietrich Idaho
Walnut Creek California #
Moscow Idaho
Ontario Canada#
Zurich Switzerland#
Boise Idaho
Seattle Washington
Eugene Oregon#
Cancer World

# Only visited Mom and Dad.

Now how do I pick a town.  My favorite, length of stay, best memories. 

It is so hard to tell.  Each place made an impression. Each place was important in shaping the person I am today.  It is all such a jumble. 

I realized on these last few years that while I have lived in Seattle for almost half my life this is not my home town.  I claim it, I love it, I have been as happy as anyone could be but I don't think it is the last stop on my journey.  I am always looking for the next place.  Some think that is weird but then look at all the places I have missed in my life journey.

and we are here on this strange place called Cancer World.

Until we are off of Cancer World we will stay put.  I will water my trees and grow Grampa's beans.  I will re-purpose my life and will continue to think about what it next.  I guess this picture says it the best.

Construction

I recently sent an e-mail to my friend Beverly.  She works for the City of Seattle.  To her horror I reported how she might have brought up our plight of the bad food we were being served while in the hospital.  All while she was being served something wonderful from Specialties.  I am glad the Lisa Brandenburg learned my whining is unending.

Anyway, while we were in-patient Beverly sent me a notice from the city explaining the lengthy construction project to be done between February and late September.  The plan was to completely re-do 85th from 15th Avenue NW to the freeway.  Huge project, long project, difficult project.  85th has become a major transportation route over the past few years.  I am not the only person that moved to Ballard.

So we have been living with the project.  Big equipment, big things that go into the ground.  We pound and dig and saw and make all sorts of noise.  We lay cement, we lay pavement we paint and putter and do more stuff.  

We have lived here long enough to know how to avoid it.  Then something happened to me.  Maybe it was going to happen anyway, but it certainly happened sooner than I thought.   I became intensely curious about the project. 

 I started driving on 85th as much as possible.  I loved seeing the progress, the big holes that appeared and disappeared.  I love watching the skill with which the digging guys picked up large items and small and moved them.  It really has been and education in what happens and what is below a street.  Granted there are lots of places and times that guys just stand around, looking in the hole or
 at the curb and contemplate the cost of beer or the best place to find a hamburger.

I realized the other day they were on the last part of the project.  I will miss them when it is gone.  The street will be perfect, the curbs continuous and the pot holes gone.  No more daily surprises.  Just a road. 

Meb has been under re-construction.  I won't miss when the bulldozers and grinders and cement trucks leave the site.  I will always remember what went into making the path smooth.
I

Cancer World is hard to understand.

We are here.  We are still your friends. We don't call you back. We can't write a thank-you card.  We certainly can't schedule anything.  We are here.  We know you are there. You have helped us all so so much.  Calls notes, offers to stay with the child. Errands, money, coffee cards, groceries, meals, hugs, open ended offers of help.  Prayers, novenas, more prayers, chains of prayers, the list is endless.  We know you are there while we are in this box, in this tiny space with a very very small part of the population. 

We worry in ways you don't. We fuss about things that you have never heard about. 
We talk a different language.  We have different acronyms and lots of weird stuff in our car and in our purses and in our homes.  Some of us have more than one home and Ronald McDonald means a completely different thing to us than to you.

We are sad about different things.  We look at our children and your children.  They have all had there struggles and challenges.  Ours have a certain flavor. You never had to see our child pull out handfuls and brushfuls of hair.  You never had to tell you lovely daughter she could not go to her first dance with her best friend that came from Chicago to visit because her "counts" were too low.  You never watched your daughter secretly die in bits and pieces as her friends go back to college while she monitors her blood sugar and worries about every surface she touches.  You never had to try and explain to her why her friends don't want to visit or come by or take her somewhere "safe".  You understand how hard it is for them to have a friend that has had cancer not only once but twice.  She does not understand why they are afraid, reluctant.  

But, we are still here.  She is at home. She has only been back in the hospital twice.  She is not like Mario in ICU bleeding from her lungs  while having her life supported by a respirator.  She has never been in the ICU.  I can't imagine what Mario's parents are doing right now. 

Mario, Luis, and Mary-Elizabeth had double cord blood transplants with-in days of each other.  They are 18-20, they all had relapsed ALL, they are Hispanic. They have lovely parents and Luis's grandmother makes killer mole'. We have all spent time together, complaining, crying, laughing and learning how to live in Cancer World for the second time.  It is so worrisome when one of the kids is sick.

 I guess being in Cancer World means there are no boundaries between your personal pain and that of all the parents and kids. 

Can you tell that I spent too much time at the hospital today. I had to vent.  91degrees makes me grumpy. 

This was my fortune cookie yesterday.

The Dishwasher hates me or Returning home.

The dishwasher and I have been at odds for a very long time.  I think I should not take it personally but then maybe I should pay more attention.

We have been in this house for 18 years.  In that time there have been 4 dishwashers that have lived with us.  The first one had a beige outer skin.  It was functional. Push buttons, no real bells and whistles.  It was asked to leave by the first of three white dishwashers.  Let's face it, I am not a brown of any shade, kind of girl.

The first one had not been in the house more than a week and someone tipped over a chair and dented the front of the dishwasher.  It worked fine until 2004 after cancer came the first time.

I had no complaints but then it decided one day to catch on fire.  Not a big fire but a enough smoke that we called the fire department and some really cute guys came.  They looked at it and agreed there had been black and gray smoke coming out of the vent. I was told that no kind of smoke should ever come out of such a device.  It was their suggestion that the dishwasher be escorted out, sooner rather than later.

The second white dishwasher was "professionally installed."  That is where a guy comes and you pay them $150.00 because you are sure having your ex-huband install the last one might have been the problem.  The guy looks at the set up and ponders why it is "wired" the way it was wired.  He must then be told the story of the kitchen lights taped together with scotch tape.  He then understands.

Several years go by (5).  Meb is cured, college happens, Mom and I go to Spokane to pick up Mary-Elizabeth, the dishwasher dies.  Again, while I am gone.  It just gives up the ghost.  We have always said that Koo killed it but he denies all culpability.

Mom and I go to Sears to the outlet area.  Since my last dishwasher was installed, the world has become stainless steel.  No slightly dented, or slightly unloved dishwashers for us.  Upstairs to the real dishwashers.  Holy Cow, when did dishwashers become a million dollars.

Delivery arranged, 900 years from now.  Installation guys come with the item. 

They deliver on Sunday.  Who knew?  Guys come, take away the dead dishwasher to be recycled (for a fee).  Opps, it won't fit into the spot because the water dohicky in the back is not in the same place and it has to be moved by the plumber and then the electrician should be called to really wire it in and not just plug it in, and the cabinet guy should come to rework the cabinet so it will fit, since it is 1/8th too wide.

I convince the guy to hook it up, plug it in, put it back as far as it will go and then I just give up. Hey, I think I have a lot on my plate. 

Cancer comes back.  

 The house gets really really mad. No one is here, everyone is spending time with Mary-Elizabeth at some place called the hospital and like a spoiled brat, it has a tantrum.   It wants some attention so it gets a new bathroom and while the plumber is here more than one time somehow Heidi Behrens Benedict brings all the pieces together.

It works, it is finally  installed completly, the plumber even moves the cut off valvue so it is not BEHIND THE DISHWASHER.   Ya think? Life is good.

Sally goes away for the first time in many many moons.  She goes and sleeps and walks on the beach. She helps celebrate her mother's 80th birthday.  Then the call comes.

"Mom can I use dishes that are not run through the dishwasher?"

Call repair guy, have him fix it, have him order the weird partthat helps the upper rack stay up, it seems weird. 

Sally goes to her 40th class reunion.  DISH WASHER LITTLE DOOHICKY BREAKS SO ONLY ONE RACK CAN BE USED.  (Did I mention the fridge had to be replaced in May?)

Really, Really, Really. 

So everyone lets get things straight, perhaps I have not been clear.  I need some things to go right.  I need to have a break here.  No more trips to the hospital.  No more broken house stuff. No more root canals. No more. 

Just say NO.....

Okay.  I promise not to leave ever again, and if I do, I might not be coming home.

Returning to Our Roots

Boy it is amazing what a difference 40 years makes and how much it does not make.  40 years.  We are the group that never trusted anyone over 30.  News flash, we are almost twice the age.

I had never been to one of my high school class reunions.

10th year:  I had started law school the Monday before and I was totally freaked out about reading a million pages of cases.

20th year:  Mary-E would have been about a month old and I was not willing to take her across the state with questionable air condition.  Again, I was a bit overwhelmed with the new addition to may family.

30th year: I was not able to find a place to stay when I finally decided to come. 

4oth:  Nothing was going to stop me!  It took a lot of planning and there were some hiccups but I made it. 

I had to go.  I had to be there. I had to see everyone.  I had to drive by our old house and see how big the trees were.  I had to try and find Topper. I had to see the long gone Wilma.  I had to have Hudson burger, even though I only had one one time.

It was so odd at how strong the pull was this time. 

Essentially it was a group of strangers.  You could have gathered 140 strangers, put them in a room put a badge on them and we would have all mingled, asked the same questions revealed the same personal details. 

Over the days we reverted to that earlier time.  We reminisced, laughed about shared memories. We dug up old memories of events from long ago.  We connected.  We remembered, people we had not thought about for 40 years came back into the front of our memories. 

It is an interesting thing to do.  Is it necessary?  No.  Is it something that enriches our lives? Yes.  Am I glad I went? Absolutely.

What surprised me the most?  How much the time in Coeur d'Alene shaped us as a group.   We were on the edge of the hippies, not quite baby boomers, not really very radical.  But I think as a group we made an impression.  An impression on each other and those who knew us.  A kind note in a year book.  A time we said hello to someone that seemed left out.  An invitation to a party. An e-mail.  A promise to say an extra prayer.

As I drove back across the state and the mountains that separate me from CDA, I realized how much of a hold it still has on me. 

My family left North Idaho in about 1974 ish.  We have traveled from North Idaho to Michigan, California, Canada, Switzerland, Michigan.  I have lived in Dietrich Idaho, Moscow Idaho and most recently Seattle. 

When people ask me where I am from, I always say Coeur d'Alene.  It is the touchstone of my life. 

As I drove down the street I realized why I am so disappointed every year in my attempts to grow petunias.

All is Quiet on the Western Front

And I am hoping it will stay that way.

Mom arrives today, I leave this morning.

I am sure she will whip this place into shape.

August 4, 2012

Leaving is a good way for me to measure progress. 

August 9, 2012

Grampa's beans.