So Time to Do Something

So as I sit here, three new families are waking up, the kids are sleeping and the parents are waiting for the blood draw results.  They are drawn ever day 4 times a day and it becomes an obsession.  How much have they fallen?What next?  What problems do the rest of the numbers show?  How long will this takes?What are the next steps? How do we survive the week-end? How is it different?  A million questions, they feel like they are in a tornado and there is not end in sight of a landing zone.

Okay so what can I do.  I am looking for one more item for the "bag".  It can be used to take stuff to the parent shower room, or for transporting stuff to and from the car.  It can be used at the grocery store because there will be lots of trips to make there.  Then there is a china cup for tea, some cinnamon sugar for the all important toast, a Starbucks Card to start racking up the free rewards and some other little things.  A note, a list to put on what ever website they are using about what they need to have other's do.

I needed the list more than anything, and the china cup.  So many want to do something and when this happens you are in such a state it is not possible to say what you need of people. 

I will drop it all off after church tomorrow. 

Meb is with her Sierra Family.  All is good. 

Three New Diagnosis

We had a great time at Christmas Eve Dinner.  Good Friends, great food.  Fun candles to burn.  Great Evening.

Three families at Seattle Children's did not.  Two new ALL, one relapse.  Damn it.  Cancer comes flying out of the sky and lands in people's lives.  You would think Cancer could wait until after Christmas.

The most frustrating thing is I don't know what to do for them.  Then I think about what would have helped me.  Would one more person telling me things help me in any real way.  Would have helped to meet a person like me right out of the gate?  Am a bad person for a new diagnosis to know given ME traveled so far from Leukemia and then had a hard re-entry?  I am so so confused. 

So I think I will do this.  When I am over at the hospital I will put together some essentials. Cinnamon sugar, Cheerios, and a wind chime for the pole. A list of things people need to ask for when all the people in their lives ask the what they can do... The essentials.  I will drop them off and leave a note. 



I never really understood who Rick Boyle could become our fairy the first time.  He had lost a child and was there for us. He was the cheer leader and gathered the troops. I now understand what it is like to want to give back in a way that will help someone after so so many helped us. 

We can never ever repay those that helped us but we can pass it on....

Here is to passing it on.

Christmas Eve Morning

4 crabs are dead, dismembered and ready to be made into soup.

ME has made lots of stuff that will be baked or is already done.  Peanut Butter balls are the best so far.

The house is just needing some stuff to be stashed.

MEb's emergency passport will be ready to pick up on Thursday.  We will probably get it on Monday. 

It is good.  

Snowy Morning...

My neighbors are all sleeping.  Quiet. No movement, one car has destroyed the view out my window.  One dog has walked by as reported by my dogs.  Sort of nice.  Snowy morning will soon give way to crazy day but for a few minutes, we can sit here with our snowy morning.

It is slowing me down today.  For an hour or so.  I needed that to happen for a few minutes. Even as I sit here the list in my head begins to form. But for a moment it is only about the pretty lights, the quiet street and the moment of focus on silence. 

Now I have to clean off the hummingbird feeder for they will shake themselves out of their semi dormant state and need some sugar water to make it through the day.

Meb comes home this afternoon. 

 

Do you think it is rude if you are clearing the snow off the hummingbird feeder and get buzzed!!!!! 

 

I spent yesterday at a job interview

A marathon therapy session.  I spoke with 7 or 8 attorneys that all asked me same questions in different ways.  It was sort of cathartic and interesting at the same time. 

I told one of them that work was not my main source of "fulfillment".  I think that was a fair statement.  I told him it could be a part of it but I was a very busy person outside of work. 

I was never a lawyer, just like Dad was never a doctor. I have put together a life that is fulfilling in other ways.  Family, friends, fellow Cancer World peeps, my exchange students, my neighbors..  You get the picture. 

I will find a job, the right job.  I will do great and memorable things at the job.  I will add value to the organization that takes a chance on hiring me with my certain weird bucket of skills. 

Life is an adventure and each time a new door opens I thank my parents for giving me the sense of adventure and courage to walk through the door.

Backing away from the hard subjects....

I am such a domesticated fowl that lays eggs for its people.

Oh well, I too have limits to what I can stand.  So Christmas Update.   House is trashed, but Christmas is mostly here.  I have not put up the Georg Jensen yet.  I will probably do so tomorrow.  It is sort of Mary-E's job because her OCD requires they be hung perfectly.  I am sort of a "get them up' kind of person.

Christmas cards are in the mail, to me.  I will get them in the mail to everyone as soon as I can. Addresses mostly done. Stamps purchased and in hand.  Dinner planned.  Presents procured, such as they are.  Tacky Christmas candles line the mantle.  We are going to have a very pyromaniac Christmas Eve.

It is all good.  Actually it is all great. For Us anyway.  Good counts.  Good grades. Job hunt is progressing. Interesting opportunities are being revealed.  Stuff I never thought about doing.  Mom is great in so many ways.  She is too busy to talk to anyone.  David is flying lots, Belle is doing what ever Belle does.  Alex, from what I hear he is doing okay.   Not many complaints. 

Well the sky is lighter but the Christmas timer does not think it is dawn yet (7:44 am). 

One thing I have learned, it will all reveal itself in time.  When that time will be is always the question.

 

 

 

Euthanizing Children

Euthanizing Children

I could not type those words yesterday.  How do you type those words.  While I often think we go to far in Cancer World and don't step back and let kids have comfort before they re-boot, never did I think about letting them ask to die.  I never even thought about it. 

So let me process this.  So we have a child. They are terminal, they have pain that can not be managed with any amount of drugs.  They are able to ask to die and I have to agree.   

Can a three year old ask? I know a pretty smart three year old, Alistaire.  She has had cancer twice in two years.  She just wants to be a big girl. She asked her mom if she was going to be a big girl.  Does she even understand the word "dead".  Even if she asked would anyone be able to "agree".  She just wants me to upgrade my phone games.  Alistaire does not care about the License Plant Game.

Mary-Elizabeth is now an adult in the eyes of the law.  (She has been an adult much longer than that. )  More than once during the process she wanted me to make it all stop.  There were lots and lots of time that the pain was beyond what could be given to her safely.  Not just once but more than once.  Lots and lots of gut wrenching, "I am going to kill these people if they don't help her kind of pain." 
New Computer system, nurse on break, new codes, no one on the floor, no one responding kind of deal.  I was very very very very clear that I knew the code and I would administer the meds if they did not respond. 

Oh, dear, if that pain was constant, would I agree to her request to be done.  To die.  Oh, see it is good for me to write through.  Would I agree?  See.  It is possible to get to the point when it makes sense. 

But what if there was hope?  What kind of hope?  Hope for snow day or hope that Santa is real kind of hope?  This is certainly a topic for another day.  

Okay.  Enough.  Time to plan the activities of the week.  Walking, cleaning, job hunting, package wrapping. Waiting for the Christmas Cards to arrive.  The usual.

Oh, I better add Laundry...

 

Wrapping more than presents.....

Wrapping my mind around.....

Common phrase, common concept.  Once you enter Cancer World your mind expands into horrible dimensions, along with your waist line.  In the same time, your wallet shrinks and your friends scatter and your life becomes warped.  You somehow disconnect from the world in a way that is hard to comprehend.  You try to keep hold but at some point you wake up and find the world different, so different than when it started. 

While in the middle of the battle, it is hard to reflect on the whys and hows and whens.  It is just about now.  Then one day you realize it has been months since the last hospitalization or the last cringe when someone sneezes.  Things start to work again.  You one day leave the "hospital bag" in the house.  It is entirely possible to go weeks without needing it.  Hospital survival preparation mode "sleeps".  It is possible to restart quickly but not be on all the time. 

Then one morning while reading the Friday the 13th New York Times, A section, page 4.... you run across an article about Belgium.  The chocolate and lace people.  Well guess what?  They have approved euthanasia for Children. 

All I could do was as read the head line for two days.  Then I finally read the article.  Oh dear.  Such an odd and awful possibility. http://www.nytimes.com/2013/12/13/world/europe/belgian-senate-votes-to-allow-euthanasia-for-terminally-ill-children.html?_r=0

Two days, I can't think about it.  So as with many of the things I can't deal with in my life, I leave it here for further discussion and thought but I don't believe I could ever agree with this.  But then I never thought I would submit my child to thousands of doses of Chemo and radiation and a bone marrow transplant.  

Christmas seems to be broken this year and stuck like Big Bertha

I can see it all around me.  Shopping, trees going up, great candles, special winter food, lights stockings, kids getting excited.  I can see it.  I just don't seem to be able to step on the same path.

When you are not part of the economic system in a productive way, then your shopping is curtailed.  When your child has had a bone marrow transplant and is still on immunosuppressant's and you can't have a Christmas tree, decorating is  curtailed.  ( yes I am going to look for a fake tree to day but with almost no enthusiasm.) 

Ummm, seems I am whining.  I have put us some things and have started but can't seem to get into gear.  I have been trying to figure out why the tree is so important and I think I figured it out this morning.  Lights.  What I really really like is when it is dark in the morning and when the coffee is hot and the house is quiet I love the Christmas lights.  Maybe the lights on the tree are the key.  Maybe the little bit of brightness they bring is the answer. 

Okay, I will try again today.  Just like they will try with Big Bertha.  She is the tunneling machine under Seattle that has hit something.  One of the theory's is she hit an old locomotive.  The part of town she is going through was where they dumped the dirt and junk from the hills they took down known as the Denny Regrade. See in Seattle, they took down several hills that offended people.(No idea why.)

 

So they had to put the dirt and stuff somewhere and evidently some of it ended up in a hole in front of Big Bertha.  Now she can go through natural material but someone might have left a stray train engine.  Whoops. 

 

She will try after they figure it out.  I will try after I figure it out.  Try is all we can do. Every day. 

Mandala and Mandela

 

One of kind of Mandala

 

Wisdom and impermanence]

In the mandala, the outer circle of fire usually symbolises wisdom. The ring of eight charnel grounds^[15] represents the Buddhist exhortation to be always mindful of death, and the impermanence with which samsara is suffused: "such locations were utilized in order to confront and to realize the transient nature of life."^[16] Described elsewhere: "within a flaming rainbow nimbus and encircled by a black ring of dorjes, the major outer ring depicts the eight great charnel grounds, to emphasize the dangerous nature of human life."^[17] Inside these rings lie the walls of the mandala palace itself, specifically a place populated by deities and Buddhas.

Another kind of Mandela

Both fleeting, both important to explaining the universe, both profound.  Neither can be truly captured in film, words, photos but both leave a profound profession. 

Like the Mandala, the impression Mandela leaves is forever.

Mary-Elizabeth won't let me have chickens or an African Grey Parrot.

I think it is just wrong.  I think both would add years to my life and make my declining years more interesting.

She keeps mentioning her dog would eat my bird.  I think it is wrong since it is her dog that would each the chickens.  I figured the child would not be the adult for a few years.  She was born 40 years old.  It is how she has made it through the second half of her life.  Mary-Elizabeth will have one heck of a second go at being a teenager since she sort missed out on the first.  It really makes me sad sometimes but then I just can't dwell on it. I need to worry instead about how bossy and opinionated cancer has made her...  She thinks she is the boss of me!!

It is what it is and for now everything is okay.

Can't get much better then that.  Of course the temp could climb above freezing.  That might be good.  Here is the real news.  It is so cold here, I have closed most of the windows in my room. 

Maybe I could have a turkey... bigger than Tucker... ummm maybe I have landed on something.

Someone sent me this link

http://thenotdyinggirl.com/   

Another young woman.   A relapse.  No way out. A bucket list.  She is 21 and 22 does not look certain.

I read some of her blog and wonder how much of what she is saying is going on in the head of my child.   I am the keeper of Cancer World.  I realize this is my gift to Mary-E but someday I hope she reciprocates and lets me know what she was thinking all these years. 

We read Katie's bucket list.  This is Lauren's

Fall in love

Go skydiving

Ride in a helicopter

Go parasailing

Swim with dolphins

Getting a tattoo (once I am done with my chemo for this relapse)

Have a Christmas on the beach sipping on an alcoholic beverage

Learn to Bartend

Take a striptease class with my best friends

Cook a stellar meal using my Food Network knowledge

Learn how to use the grill

Go backpacking (it seems like I will soon with my other chemo buddy)

Throw a massive party where nothing gets broken or stolen

Volunteer at a Hospice Center

Do some gardening

Be able to run a mile again with my extremely messed up leg

Take a roadtrip

Eat something exotic and completely out of the norm

Go to a nude beach and actually go nude

Go to my college of choice, Florida Gulf Coast University, and be a contributing part of their Division 1 swim team

Become a nurse

Eventually get married

Lots of talk about bucket lists....  I think they are just being mindful of making days and weeks and moments count.

In some moments I cherished today, I watched the birds feed early this morning.  It was so cold that when the crow cawed we could see his breath.  Tomorrow I may try and take a picture.  We shall see.

Shifting Gears

Mom should be on the train.  She will have a great ride today.  It is clear and beautiful, I am sure she will have a chance to see the remnants of last nights cold and rain and promised snow. (We are dry and cold not snow.... darn.)

So for the next few days the agenda will be different.  Mom will set the schedule and we will try our best to make sure she has a good time.  She has a list of places she wants to visit.  We will talk and fuss around the house.  I will have to do laundry, the birds will be well fed and the dogs will be walked. 

We will gather the friends and family and have a few good meals.  We will do a bit of shopping, Good Will, Two Big Blonds.  There will be coffee.  Good Coffee. Mom will scatter grounds all around the kitchen, we shall laugh and then leave the house on House Keeper Friday with a smile.

It will be a good week.  It has been a long time since she came to visit for a visit.  Not for a hospital time, or a sick time, or a surgery time, but for a visit.  It will be a good thing. 

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.

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.

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. 

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. 

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. 

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.

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

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.

 

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.

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, 2013	7:02 AM	4:44 PM	9h 42m 13s	− 2m 56s	11:53 AM	26.2°	92.135
Nov 7, 2013	7:03 AM	4:42 PM	9h 39m 18s	− 2m 54s	11:53 AM	25.9°	92.112
Nov 8, 2013	7:05 AM	4:41 PM	9h 36m 25s	− 2m 52s	11:53 AM	25.6°	92.089
Nov 9, 2013	7:06 AM	4:40 PM	9h 33m 35s	− 2m 50s	11:53 AM	25.3°	92.066
Nov 10, 2013	7:08 AM	4:38 PM	9h 30m 46s	− 2m 48s	11:53 AM	25.1°	92.044
Nov 11, 2013	7:09 AM	4:37 PM	9h 28m 00s	− 2m 46s	11:53 AM	24.8°	92.021
Nov 12, 2013	7:11 AM	4:36 PM	9h 25m 15s	− 2m 44s	11:54 AM	24.5°	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.

 

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.

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.

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.

We Chose Gonzaga for lots of reasons. This is one of them. I am so proud when the Westboro Baptists protest. All they recieve from this community is love.

 

TO:	The Gonzaga University Community
FROM:	Thayne M. McCulloh, D.Phil., President
SUBJ:	A Message Regarding the Westboro Baptist Church – Invitation to Action
DATE:	October 31, 2013

 

Dear Gonzaga Students, Faculty, Staff and Administrators,

 

Yesterday we learned that the Westboro Baptist Church (WBC) intends to "protest" the Memorial Service of Thomas S. Foley (which is to be held at St. Aloysius Church tomorrow, Friday, November 1^st - the Solemnity of All Saints).  Many of you were here when the WBC last picketed near our campus, three years ago (October 2010).  Just as in 2010, as soon as we became aware of their plans, we also began to see interest on the part of community members in launching appropriate counter-protests.

 

Now, as I was then, I am grateful that a protest intended by its organizers to foster hate and deepen prejudice has elicited concern, attention, and thoughtful activism on our part; these are signs of Gonzaga at its best.

I do however want to call attention to several issues we need to consider in view of WBC’s plan to “protest.”

1)  The core of the WBC's activism is a message of hate and fear, often targeting those who may be suffering in some manner already.  The adherents of the WBC have chosen to focus their hatred in particular on college students (whom they perceive to engage in activities that are an affront to God), and military personnel (whose deaths they attribute to God's retribution for human sinfulness), and those who are gay.  The WBC often chooses funerals as opportunities to stage protests, and the WBC's message gains its power in part because it is delivered in a manner intended to shock, threaten, or offend, eliciting strong reaction thereby.

2)  A university exists to sponsor and facilitate the search for truth in the context of intellectual (academic) endeavor.  The announced WBC picket provides us with an opportunity to respond in a thoughtful and uniquely academic manner regarding numerous dimensions that relate to such an event: hate and its expression; movement politics; Constitutional rights; and social responsibility, to name a few.

Gonzaga, as a Jesuit, Catholic and humanistic university, has a special responsibility to respond actively to incidents of hatred and fear and to counteract decisively.  Those of us in Jesuit institutions are called by the Church to serve as beacons of light and hope for all people, but particularly those who are frequently marginalized and victimized by society.  We thereby follow in the footsteps of St. Ignatius of Loyola, founder of the Jesuits, an active and engaged participant and leader in the promotion of justice over four centuries ago.

 

3)  Our understanding is that the WBC protest -- should it occur -- will take place in the general vicinity of St. Aloysius Church, but most likely on a busy public street with high visibility.  The WBC is not welcome on the Gonzaga University campus, and we will not permit them to picket or demonstrate on the private property which the university owns.  Through our evaluation of the WBC and its activities in other cities and campuses, we have determined the group is usually very small in number, well aware of its constitutional rights, and represented by experienced legal counsel.  It often carefully communicates its plans to the police and media in advance in order to generate reaction, but also to clearly establish its legal right to publicly demonstrate on public property -- and works hard to elicit maximum public exposure for its activities.  If WBC pickets are successful in evoking a physical confrontation with opponents, as has occurred, they will sue in the hope of obtaining monetary damages and raising their profile.  Thus, we can anticipate police presence to protect the peace at WBC demonstrations.

Gonzaga community members are advised that any violation of the law is likely to result in civil lawsuits as well as criminal charges.  In any event, members of our community are urged to thoughtfully consider the power they surrender by playing into the carefully crafted agenda of this group, that gains influence primarily through the attention given to it.  We invite individuals, external to the University but interested in taking a contra-position to the WBC, to consider all this in selecting appropriate responses.

Call to Action
I call upon the entire Gonzaga community -- students, faculty, staff, and administrators -- to join me in responding to the voices of fear and hatred by actively taking part in one of the justice-oriented events currently being planned tomorrow and in coming weeks. 

 

This Friday, November 1^st, I invite all members of the GU community to wear Gonzaga apparel; and for those who are not in class, (or attending the Memorial Service for Mr. Foley), and wish to join together in solidarity -- to gather for a Vigil for Acceptance and Peace on the steps of Foley Center at 11:30 a.m.  Michelle Wheatley, Director of University Ministry, together with representatives of GSBA and the Gonzaga Community, will lead those who gather in prayer and reflection.

 

Those who intend to directly counter-protest the WBC are asked to do so in a non-violent, and legal manner, cooperating with the direction of law enforcement and campus security.

 

Please mark your calendar for the annual Gonzaga observation of the International Day of Tolerance, scheduled for Friday, November 15^th at noon, again in front of Crosby Center. 

 

Thank you, and have a blessed (and safe) All Hallows’ Eve as wel