Saturday, November 30, 2013

Bookends are dropping off for those of us in the Middle.

The notices come from the edges of our lives.  Weird phone calls, notices on Facebook, the odd note from a friend. 

They talk about us being the Book-End Generation.  We have kids and parents needing our assistance.  When you think about it everyone spends some time in the middle and then we become the right end of the shelf.  We just happen to there now.

So this week-end has not been good for many of my friends.  Two dear friends have lost parents.  Lori Mann's dad died while she was desperate to get home to see him.  She was not in Tucson because she was going this upcoming week to surprise him for her birthday.  Instead she will be waiting with the family for a death certificate.  He died on Thanksgiving.   She and I decided he ruined Hanukkah.   

We both cried on the phone.  I assured her she soon would start to breath again.  I know it took a couple of weeks for that to happen.  The breathing thing is a challenge for a few days.  Dads leave such a huge chasm in our worlds when they depart.  Mine has been gone for almost three years and I still can't really look in the whole.  I can't listen to my saved messages because I don't want to hear his voice.

Bill Nary lost his mom.  She was a great spirit.  I don't think I met her more than once but know her children.  Both of them from different times in my life's journey.  Wonderful person.  She was upbeat and kind and generous.  Someone I was glad to know. She also gave me my first rice cooker before any of us stupid white people knew about them.  I don't know what it would be like to be motherless but I am in no hurry to find out.

The left end of my bookshelf returned to Gonzaga today.  It was a day early but the driver was wanting to get over the pass before the snow and ice arrived.  It was a good decision.  They were all ready to get back.  It is good to see Gonzaga becoming the alternate home.  As it should be. 


The right end of the bookshelf appears on Tuesday.  She has not been out of Eugene for more than a year.  She has lots new to do and see.  We are all looking forward to some time with her.  She has a list.  Two Big Blonds and Good Will are top of the list.


Remember to
Take care of your shelf.  All of it.  Even the middle.



Friday, November 29, 2013

The Huge Rubber Band that is our life.

It snaps us back on occasion.  To that place of quiet reflection and "nowness".  All we have for certain is the breath we have just exhaled.  It could all just come to a crashing end before the next one
.  We must look at just this instant.  Look at this small bird darting around or the bit of sunshine coming in the window.  We can't look beyond. 

Try it for just a moment.  Close your eyes.  Clear your mind... count to three.  Okay try again, Clear your  mind.... Okay, Okay, that means you have to not think about the dishes that need washing, dogs that need walking, bills that need paying.  Now try again.  Inhale....

See it is so hard to do.  Our minds are so busy. 

While in Cancer World we are reminded all the time.  Now, this moment, this breath.  Today was one of those days. 

Several years ago we ended up in the Hospital for several days during Thanksgiving.  No Turkey Sandwich came our way.  We make sure it does not happen to those at the hospital again.  We take sandwiches over and make sure every one's needs are met. 

Going this year resulted in seeing several folks that we know that haven't seen ME for more than a year.  The relief they feel when this see her up and walking and looking great is so much fun to see.  She has become one of their success stories.  We ran into Dr. Anderson.  Bob.  He has been doing transplants for a very long time.  He lacks many social skills but is meticulous and always in line for his coffee at Starbucks at 7:36 in the morning.  He doesn't remember my name or Mary-Elizabeth's but he remembers her numbers.  He is a funny guy and a good runner.  When she said she felt she was going to throw up, he ran so fast from the hospital.  During an entire month he was her attending, he only touched her once.  An awkward pat on the back:  "There There".  It was sweet.  Today I reintroduced us to him and before we left he gave us both a Hug.  A real hug. 

We had some time with Katie Elliot and her family.  Katie is in the hospital and stuck in Seattle for a couple more weeks.  They are very focused on quality of "life" with her.  What a snap back to reality. 

Good, bad, horrible, success, failure, transplant, no transplant, relapse, complications, side affects, new test drugs,  trials, surgeries, procedures, IV's, ports, hickmans, blood draws, it all keeps going on going on.  It really makes it hard to worry about whether or not the kitchen is clean or the laundry done. 

It needs to be about staying focused on each other. Our time together.  Not missing a chance to have some fun or have a picture taken or a movie seen. 

We are looking at today. Now. This moment.

Tuesday, November 26, 2013

Watching the Pain of Others...

I just hate it.  I see it all around me. I try to enfold it to myself and make it better but sometimes you can only be there to hold someone or give them a shiny object to put on a chain or buy them coffee or swear in tandem with them.  You can go to lunch or take them a turkey sandwich or do their laundry or do some shopping or give them a good book or a trashy novel or a magazine. 

There is nothing to do but be there. Be there.  Sit there. Try to be cherry but know all of the humor and the jokes and the swearing is only covering the deep deep loss and disappointment. 

Sometimes it is not the big things like no grandchildren, it is the missed play, or dance or trip to the mall or the movie opening or the real Christmas tree or the fear of new animals, plants, foods, people.  All of it is trying.

Some in surgery, some coming out of surgery, new diagnosis, new trials, new issues, new complications, new events faced without a dearly loved child or spouse. 

The world if full of craters and sink holes and land mines.  No getting way from it.  Only thing anyone can do is start to fill in the void, one spoonful of time. 

Off to visit someone recovering from the surgeons assault on their body and then to buy crushed pineapple. 

Saturday, November 23, 2013

So When Teenagers are Terminal...

They do things differently. 

The little ones, the babies don't really understand.  They sometimes talk about heaven and are just not aware as much about what is happening.  They know but in a very different way.  I am certain they absorb all the love and caring that surrounds them as they return to heaven.

Old people die in a very distinct way.  They slowly withdraw from the world and get to a point they don't want to be touched.  They know what is going on but they are trying to disconnect from this live so they can be fully present in the next. 

Teenagers, those self absorbed, narcissistic, things we try and keep in the house are different.  They focus on living.  Focus on doing all the things they know they are going to miss this time around. Sky diving, feeding tigers, running marathons, making memories.  Driving fast cars, they are trying so hard to pack it all in.  I am watching such a child right now.  She is trying to do it all.  She has a little time, but not a great amount.  She is moving full steam ahead and pulling her family behind her. 

Her family is mourning the loss of her future. Her loss of all the things we plan for our children.  College and love and children.  Cancer kids loose bits of that not matter how good the outcome.  There is loss in so many new and amazing places.   It is what it is.  It is hard and heart breaking and real. They are also by her side.

 I see endless pictures of Katie on her adventures.  Photos and videos, memories being made and lists being filled and things being accomplished.  She is done doing heroic medical things. There will be no cure.  There will be only the small actions to keep the status quo for as long as possible.   Nothing more, nothing less.


One thing I know  is that the teens are painfully aware of how their departure will create a Winslow Size Crater in the lives of their families.  They understand the pain of loss will never be healed.  They don't want to leave but know they don't have a choice.  They have to go and they know it.  They are deeply worried about their Mom and Dad.  In some way this worry bothers them the most.    I think it is the reason for lots of the bravery.  The frenetic activity to create endless good memories.  It isn't for them.  It is a gift they can give their family.  "Remember when we got to see Pink?" 

Katie and Darlis on the last big adventures.  My heart is breaking for all of them.  Cancer World simply sucks.  There is no other way to say it.  Sometimes we get together and just cry and swear and curse and then we cry some more.  

We talk about how brave our children are and how great they do.  I realized several years ago that the bravery comes from everyone.  They mirror back to us the strength we have given them.  Yes I am patting Cancer Moms on the back and we deserve the pats.  We need all the strength we have and can muster in dark times to pass it on when it is needed to hold up the next person, the last person, the again person entering Cancer World.  

Lets also be clear, I don't pretend to really understand what those I have loved and lost are going through.  My comments are from a place of observation.  We are all in the big soup pot of pain and worry and loss.  It is different for everyone.  Because as a Cancer parent I have to be ready to face the worst, I have asked, watched, listened and cried with the rest of them.  Not an expert, not from personal experience.  I just needed to say a few things. 

We all learn and teach each other.  I have watched Mom's grasping to each positive change like it is a sign from God.  I have watched the long group of people come and go from the room with the single nurse and the announcement asking we all stay in our rooms.  I have watched the person's name be moved from the regular room to ICU and then disappear.  I have held the hand of the mom that doesn't know what option to choose, another round, a study, an iffy transplant. 

We all need to pay more attention to the teenagers.  They are out there making the most of it, at least on the outside.  They are running as fast as they can for as long as they can.  Making each day a day of creation.   Its not fear or trepidation, it is living. 

Tuesday, November 19, 2013

Time Away trying to reconnect to the world.

It seemed the thing to do at the beginning of my 60th year.  Travel back into the past.  A place well documented and familiar. 

Threw a few things into the car and headed to
the Davenport in Spokane.  It has a couple of touch points for me.  Grandma Foster and I went there for a couple of nights and Thanksgiving Dinner one year.  I am sure I was in law school at the time.  Maybe teaching, I have to work on figuring it out.  We stayed in what I would call a very "period" room.  Not a good period but it reinforced the importance of the public areas.  In the old days it was enough to have a grand place to sit.  The room was secondary.   

I went to a conference in Spokane  pre-relapse and stayed at the Davenport.  It had been "re-done".  Goo had been removed from the wonderful Lobby beams.  Years of cigar and wood smoke revealed lovely gold and green and red.  It is truly a wonderful place to go and remember.  Even if your memories are not from there. It is a place to remember.  It has seen so much.  The impressions of presidents and real celebrities like Amelia Earhart and a women in white that haunts one of the ballrooms.  Yes, ball rooms, more than one.  

John is the door man and he has worked there for 59 years.  He is in his 80's.  He comes with black gloves and hat and red coat.   He has seen it all.  There are places in the marble floors worn with the years of standing bell man.  When you walk up to the concierge desk you step into a place also worn by millions of people that stopped and inquired about something.  All the requests vibrate up from the floor.  All the requests...


Sometimes visits to such places are required.  A place to sit, think and to know despite what whirls and swirls around you, life does go on.  It is sort of like the back drop.  It just sits there and supports you with some continuity.   When it feels like nothing but crazy and out of controlness is happening, there are places where things are the same and have been that way for decades. 

I am headed into a new decade.  It will full of change and challenge and struggles but then I know there are places I can go to find a bit of quiet. 


Monday, November 11, 2013

A 17 year old's bucket list....

Europe Australia, New Zealand Cedar Point in Sandusky, OH (She’s an adrenalin junkie that loves roller coasters!) Mexico (this one is taken care of already by dear friends. We go in December.) NHL game – Penguins or Blackhawks NFL game- Seahawks (bet you thought it was gonna be the Patriots. I did!) The Seahawks have stolen her heart. Phantom of the Opera on Broadway (it’s her favorite movie and someone told her the Broadway production made the movie look like it was done by kindergartners.) Snorkeling (this one might be accomplished in Mexico next month, but it all depends on how healed she is.) This is not her complete list, but it’s what she whipped off in five minutes one day at lunch so I figure these are her top wishes.

No seventeen year old should ever have such a list.  It should be a life list. It should not be needed right now. There should be endless time for seeing and doing and completing.  She should go Snorkeling.  With her buds on Spring Break. She should go see Phantom of the Opera with girlfriends while on a road trip across the county.  She should be backpacking through Europe for a summer.  Every kid should sleep on a train while doing a year abroad. 

Katie has a bucket list.  It is short in some respects, endless in others.  Her chances are not the best of completion.  A lobe of one lung was removed this week.  In January they go in and look at the other one and certainly part of it has to go. 

She is an Osteo Kid.  Her achy bones were not growing pains.  She has never really been finished with her treatment.  Chemo to reduce the tumor, surgery to remove the tumor. More chemo, more surgery, more scans, more surgery.  She and those that love her know that she must make a special effort to complete the Bucket List because the time is short.

Some ask how come I keep in touch with "those" people.  How do you leave people you know and not try and help someway?
If you are looking for away to help.  Darlis Elliot is the mom.  She is on Facebook. She can best direct your efforts.  Tell her I sent you.

Saturday, November 09, 2013

Hard is Hard

As people in crisis we are always trying to make sure our crisis is not as much of a concern as the next parent.  We all remember the kid competition that began before the children were born and continued after birth.  It is subtle but always there. 

My daughter walked at 8 months 13 days two hours.  My son can throw his toys 46 feet and does calculus.  The competition is there, all the time.  But then Mary-Elizabeth was born on her due date AND it was the 4th of July. 
See I am as guility of it as the next. 

It continues into Cancer World.   My daughter's blast count was 3487609765 when she was diagnosed.  My son has the rarest form of mkdlsdijfghng they have ever seen. Only .7 persons in the world have it.   Then there are the remission and vomit racers...  My child went into remission when they hooked up the IV.  Their Cancer was so scared it just ran.  My child has never thrown up.  He has never had to have a blood transfusion or a dose of Zofran. 

As a semi competent mom, I could match them story for story.  My daughter is having chemo for fun...

It always puzzeled me at first.  I then realized we have to deal any way we can. It is coping mechanism. A way to get people to talk, a chance to have someone say it is going to be okay.  It is a way to make sure we are not the worst.  It is a way to engage other parents who are so scared and worried and so very devastated and destroyed.  Searching for the reasons in a world that reason and cause are just not available.  We want to make sure we don't do it again, what ever it is that made this happen.  We will be more careful the next time. 

There is also competition between the types of childhood cancer.  Osteo vs leukemia vs neuroblastoma.... This is the worst. No this requires 989876309378 doses of chemo and radiation and three witch doctors and a toads spleen. 

The fact is it is hard.  All of it is hard.  It is not degrees of hard. It is just hard.  Granted it is hard in a world changing way but many of the things in our lives change the world.  We are all one phone call, one text, one _________ away from life changing.

This Ted talk really spells it out.  Hard is Hard. Worth the time, worth listening to and passing on. 

http://www.upworthy.com/a-4-year-old-girl-asked-a-lesbian-if-shes-a-boy-she-responded-the-awesomest-way-possible

Friday, November 08, 2013

Four Kinds of Cancer Moms in my life.

1st. There are the moms that are with their child 24 seven deep in the heat of battle.   They need coffee, a hungry listener and some someone to tell them it might be okay.   They need someone to nod at the right time and agree with them when they question their decisions.  They need to feel like there were decisions they had a hand in making.  Radiation, high dose Chemotherapy, surgery, another pint of red blood cells.  They have weird and often irrational outbursts.  I still feel bad about the guy just trying to take my order for a hamburger.  How could he know.  How could he know his little bit of push back was enough to make me a suicidal murder.  Again sorry about that. These moms cling to hope like it is oxygen. Often their child still has hair.

2nd:  They are me.   We have been in Cancer World so long we don't even know how not to be there.  Our DNA has been changed in such a way that we can walk through a crowd and find the other Cancer Moms.  Sort of like the Aliens finding each other in some horror movie.  We are a bit jaded.  We have hope. We live with hope. We know hope is not enough.  We have seen kids die, kids relapse, and suffer in so many ways we can often be numb. We have nightmares and little tolerance for lots of nonsense.  Really you are worried your child did not get into Harvard.  you have a child that is still fertile, did not loose 20 points of IQ because of Radiation and does not face guaranteed secondary cancer.  Quit being such self-centered whiners.   We too take off the heads of baristas on days it all comes crashing in on us.  We have some protective walls but they are thin.

3rd:  Mom's that loss their kids to this horrid disease.  The  rest of us are afraid of them because they have gone around a corner we don't think we can even imagine.  We know we don't understand their pain and their ultimate despair. We walked 24 miles of the ultra marathon but stopped before the climb into the Himalayas.  There is so much we don't understand about loosing a child but we often re-coil in horror from their pain.  We have to stay in touch, we have to listen, we have to respect the boundaries they set about conversation.  We have to keep trying to figure out a way to help.  It is not easy but their anger and sadness needs a home, a place to rest and be healed. 

4th:  Oh, these are the worst.  They are closer to the 3rd group with some 2nd thrown in the mix.  They have become the 1st group all over again because they are running out of options. Things are not going well, Cancer is winning but not clearly.  Maybe it will be okay, maybe they are going on alone up the mountain.  It is hard to say.  They face such horrid things.  Surgery, lungs being taken out, new transplants, unknown never used drugs on small bodies.  It is not a good place to be.

We are all just moms.  We do the best we can. We handle what comes our way. We look to each other for help and support and some understanding.  We suffer together, we find joy in things like bald heads. 

In no way does this club discount the help and support for those not in Cancer World.  None of us would escape with our lives without their support.

Just thinking about some of my favorite friends that in the midst of their struggles.  Will try and check in this week-end.  I am going to make some Pumpkin bread, because sometimes that is all you can do.   Especially since not everyone loves my brussel sprouts.

 

Thursday, November 07, 2013

So this is what I learned this week from Michelle. So this is the SAT in Korea. Very different than from here.

The annual college entrance exam was held on Thursday in education-obsessed South Korea, with the morning rush hour being rescheduled and early-morning planes being grounded.

All was to ensure that test-takers have the best possible chance to do well on the College Scholastic Ability Test (CSAT) given once a year.

This year, a total of 650,747 high school students and graduates headed to 1,257 test sites nationwide to take the exam believed to determine their course of life and future professions.

The score a student earns on the exam is a key decider of college entrance. In South Korean society, attendance at a prestigious school is crucial in obtaining a successful job.

Under government orders, many businesses and the stock market opened one hour later than usual to alleviate the traffic for students on their way to the test site.

Buses and subway trains extended their rush hour services to help all exam-takers arrive on time. Airplanes were banned to land or take off at local airports during the listening portions of the test as part of the noise control measures, and traffic was restricted within 200 meters of each of the test centers.

The exam consists of five sections, including Korean language, mathematics, English, social and natural sciences and a second foreign language.

The test, which started at 8:40 a.m., will go through 5 p.m., including lunch and break times.

Wednesday, November 06, 2013

Why does it seem we Plunge into darkness this time of year.

I think it is just that we notice more as it becomes colder.  I have looked longingly at the charts and the time really only changes a minute or two every day.  Some times in the morning, some times in the afternoon.  It is not drastic, it is just steady.  Both ways. 
(million mi)
Nov 6, 20137:02 AM4:44 PM9h 42m 13s− 2m 56s11:53 AM26.2° 92.135
Nov 7, 20137:03 AM4:42 PM9h 39m 18s− 2m 54s11:53 AM25.9° 92.112
Nov 8, 20137:05 AM4:41 PM9h 36m 25s− 2m 52s11:53 AM25.6° 92.089
Nov 9, 20137:06 AM4:40 PM9h 33m 35s− 2m 50s11:53 AM25.3° 92.066
Nov 10, 20137:08 AM4:38 PM9h 30m 46s− 2m 48s11:53 AM25.1° 92.044
Nov 11, 20137:09 AM4:37 PM9h 28m 00s− 2m 46s11:53 AM24.8° 92.021
Nov 12, 20137:11 AM4:36 PM9h 25m 15s− 2m 44s11:54 AM24.5° 92.000


Not much.  Just a bit. 

Same in the summer. Light creeps up on us.   I have to accept both.  I have to accept it is possible to be great all the time but I notice I change my behavior.  It is perfectly okay for the dogs to bark during the sun light.  They can howl, and pursue the treeing of cats and squirrels and bark insistently  at the crow that loves to bang on the back gutter to get their attention.

Right now, 5:48 p.m. , in pitch blackness no barking is allowed.  It is too dark.  Everyone must be sleeping.  We are really just waiting for pizza.  Waiting to adjust to this new time.  It is really almost seven and we are hungry for dinner.

Instead of walking lots of places, I am back to quilting.  Dark activities.  Sun requires non-outside projects.   I just am not ready to give up the light.  I am not quiet caught up with light activities.

Dark.  Dark.  Dark... working on making it not matter.

 


Tuesday, November 05, 2013

It was a dark and drippy morning

Apparently I do live in Seattle.  I was beginning to wonder.  In the past couple of years I have come to accept that sometimes I am living in one of those old weird Twilight Zone episodes. 

It looks the same, the view is the same, the language is the same, everyone else is the same, but it is not the same.  It is not anywhere near the same but everyone has to tell you it is the same because they are living in the "same".

I am finding it is easier to visit someone in an alternate reality then to try and leave the reality.  (Can you tell I just watch a time travel movie?)  I am venturing out more and more and staying for longer and longer times.  I even drove down town and then went up into a tall building and had a meeting.  Boy, hadn't done that for a very long time.  For those who are wondering, One Union Square has smart elevators and Two Union Square does not.

Sort of refreshing and fun. Familiar but with a new look.  Everything has a new look.  I know my way around but things have changed a bit.  I am certain I will remember the paths and the way.  


I have a special leather portfolio, red.  It is missing. I have been looking for it.  I have not used it for two years.  So it is hiding from me.  I hated not having it.  So I did the next best thing.

I had a manicure and had shellac polish.  Way cool.  They look like movie star nails. 

Sort of fun.  But then we live in Seattle. We have to shake it up because .... It is dark and drippy morning.

Monday, November 04, 2013

Universe and Gentle Reminders

Yesterday I wanted to go see a movie.  I wanted a happy silly romantic comedy.  Nothing serious, or profound or significant. 

I followed the trailers to About Time.  Started off just the way it was supposed too.  Awkward guy, seeking love, finds a the perfect girl in a truly weird way.  Looses her, finds her again. Guy has a weird family and a good heart.   Even if he is a lawyer.

Then..... don't you just hate the Then...... 

Damn it all to hell.  It headed into overcoming saccharine  sentimentality and went straight to amazing, poinent, life changing... you get it.

A good reminder of two years ago when our lives just shifted. It was a jolt to be completely removed from life as I knew it two years ago.  One phone call and bam... Life Plan Alpha..... over.  NEXT.... The change can be life affirming or life destroying, depending on the day. Trying to rejoin the old world again.

Getting back to the super highway is a process and one that takes some careful care and consideration. Sort of like the movie, it can change in an instant. 

Shifting gears again and headed back to the real world.  The Universe provided a reminder yesterday. 

Be open, It is never what you expect, no matter how carefully you do your research and follow your instincts.

Saturday, November 02, 2013

The Mid-Term Grades are in.

And she is doing great.  She is taking some sort of calculus I don't even know existed and like my father, I can't even spell the word.  All I know is the book she uses is the most expensive book I have ever purchased and I bought some really expensive lawyer books in the day.

She is doing great in school.  Doubly great if you count the chemo and radiation and the stress and the.... all of it. Yesterday they were all getting ready to meet the nasty protesters and I told her Grandpa John would have been proud of the way they were approaching the problem.  He was one to fight injustice with justice and calm.   The part I don't think she understands is how hard he had to work for what he did.

Things were not easy for Dad in the study department.  He was bright be he always pushed himself and he always had to study. I found the letter from the teacher asking permission for him to be skipped a grade.  Dad remembers it being because he was too big for the chairs.  He was always a bit ahead of himself in that way but he did a great job.  He studied hard and he taught us how to study.

I remember when I went to college he gave me a bit of advice.   Go to class, take notes, come home and recopy those notes so if you are unclear about things you can get the answers straightened out. Every time you have a test, review from the beginning so finals are not a problem.

Good advice.  Grandpa was always full of good advice.  He never expected perfection, only that we did our best.  Nothing more or nothing less.  Simple.

Wind is here.  Amazing gusts.  But then a little wind is good.  Cleansing in many ways.  Hoping some of my leaves take the hint and head away.