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

Trees are done with Fall

My trees are done dropping their leaves.  I planned on taking a picture and that failed.  Maybe I will set up a web cam next year. I watched the process. Little by little.  It was one that you wouldn't really notice if I had not raked leaves several times.  Rake them up, more would drop.  Gravity is still working in our hood. 

I was looking at the first picture I took.

 

Then I looked a couple more as the fall progressed.

 

The branches don't droop. They have lifted up as the leaves have left.  Fewer leaves, fewer, less weight.  Maybe this is the lesson.  Time to shed stuff, pounds, all the other things that are weighing me down. 

 

 

 

Alternate Realities.... And the Maps Required

It's not hard to loose track of your reality.  It can slip away in a moment and you find yourself with the "OMG I'm lost" look.  I know I have had it for awhile and know that as I edge back into my former life, the face returns.   Often I feel like the people caught on the other side of ours mirrors.  I can see some things clearly but their are some imperfections.  Like being at Nordstrom in front of the mirrors they buy to make you look smaller.  Fun House Mirrors.  Returning to the living side of reality can be an up hill trek.

This transition is different then last time but is happening.  Mary-Elizabeth has returned to school and being successful. She has had a cold, missed PT and survived.  She is handling change and disappointment like a pro. 

I am having a more challenging time.  All the folks around me are retiring and I am looking for the next part of my working life.  The last 10 years should have been my best money years.  It is the time one really socks the money away.  I have spent the years socking away at Cancer.   Throwing my resources and creative effort in a different direction.

As I evaluate the situation I have come to realize how much damage has been done.  So.  Now What.  My firm is dead and buried.

So.  So.  So.  Time to get out the maps and see what still remains.  Have there been new countries created? New border adjustments? New roads, new bridges, new secret handshakes, new passwords, pins and thumb prints. 

The maps don't just reveal themselves.  They hide things and require some interaction. Some work at making them tell their stories.  Sometimes your journey runs off the page and you have to figure out where the new map can be found.

I just returned from one such adventure.  Lots of bits of maps. We were in Canada so we had not signal.  No Siri to boss us around. We had to ask, study, figure out how it worked.  Sometimes the easy way is not the best way.  Sometimes by taking a minute, having a discussion and looking around can reveal a secret.  A surprise. A new way to travel. 

So I am looking at new maps, new angles, new secret ways.  Long is this journey. Interesting, unpredictable and enlightening. 

It helps having good friends, good music, good food, good views, good adventures to keep it interesting.

Oh by the way.... If the Dixie Chicks ever come back to the US to tour, they are worth the effort to see.  Oh amazing. They have had a similar hiccup in their careers and were knocked off course for awhile.  But they are back!!!!!

Cancer World by the Colors

I was coming home the other day along the water front and the Seattle Ferris Wheel (not a structure less it create land use issues) was pink.  It was pink for October which is Breast Cancer Awareness month.  Nice cause. Nice reason to have a giant pink thing swirling around.  Fitbit has a pink band for those of you with wrist version.  Water is pink, the White House was pink. Pink is pink.  

Now how many know Gold is the recognition for Childhood Cancer.  Yeah, I didn't know either.  I had missed it cause orange is for Leukemia.  It is all so hard.  When you are in the little block of your color you don't see much outside of it. 

I complained to my sister about it and she came unglued.  She pointed out Cancer kids get a lot.  Make-a-Wish, a color, lots of fund raisers and lots of attention.  She is in Childhood Depression and Suicidal World.  She has 8 year old ready to kill themselves.  Kids she is trying to keep alive. Then there are the autistic, Asperger folks and the prostate, pancreatic and lung and.......

It is way too much.  It is sort of like my job search, easy to loose focus.  So much is out there it is hard to find a way to narrow down where your energy can go. 

Solution?  Probably the time to flood the earth and destroy humanity and start again has passed.  So.... I guess we all have to find a way to care the best way we can.  It is the little acts that make a difference.  The kind of act you don't remember doing.  The dinner, the card, the offer to walk the dog, the event the offer to do laundry, the cup of coffee, the offer to babysit, the raked leaves, the $200.00 check sent out of the blue.  It all adds up. 

Pay attention to those around you. Think about what would help you.  Never pass up a chance to listen. 

Colors don't matter.  Pink, Gold, Yellow, Orange.  Everyone in Cancer World is mad.  Everyone is in turmoil and have had their world shaken to the core.  No one has escaped the scars and the side effects.  It is unfair, horrible, devastating.  No one is ever the same. No one is ever going to be the same again. 

Cancer Mom PTSD

I'm sure there is a study about us. 
I'm sure there has been research.
I'm sure thousand's of mom's have come to realize they are afflicted.
I'm sure there are traumatized dad's and siblings and extended family members.

It is just no fun when it rears its ugly head.  When a glance at a photo or a Facebook post or a text or a call from a friend, it rushes back.  It presents its self front and center.  A real living thing.  The train leaves the station and you are on it.

I was thinking about all of that as I drove across town to meet Darlis this morning.  She received news yesterday that her almost 17 year old has more tumors on her lungs.  Lungs that have endured surgery once and will have to do it again.  Katie was 15 when her knee decided to give a home to Osteosarcoma.  A lovely cancer with the propensity to travel to the lungs when it is found in the bone.

They are starting to realize she has never been out of the woods and has never been disease free. Cancer has taken up a place in her body and loves it. They throw lots of stuff at her cancer and then it laughs. 

Breakfast was about hungry listening.  Listening and rolling the information around in my mind.  Trying to help with the hard surface impact but knowing there is much of a chance to keep the impact from happening. 

Okay, I know there are those who will add prayers and chants and rages against God, Allah, Buddha and the rest.  I know we are not supposed to think the worse and say repeatedly, "its going to be okay".   But when you are in the middle of this, you have to go to the darkest place first.  You have to see down that scary black hole.  It is necessary to know it is there and is real.  It is only then that you can take a few steps away and see what the path is to avoid the plunge.  Chemo, radiation, surgery, and in our case transplant.  You have to know what you are facing or you could never, every allow the docs to do what they do to your child.  No sane parent would ever let anyone put poison and radiate to the n'th degree a child unless they knew there was a chance to avoid the black hole path.

Another complication here is the age of Katie.  She is a smart, beautiful young woman with a mind of her own. She knows what she is facing and knows what it means to be treated for cancer.  She knows. She has been there.  She is not willing to give them carte blanch this time.  She does not want to feel pukie for the next 5 years. She want the ability to live life as much as possible.  We applaud her for that and hope to be able to add some good things to that life. 

Just for the record, the home made dream catcher is working.  I even had a dream with Dad in it... Something I have not had on a regular basis.  Sort of nice.  He thinks mom needs a new Subaru. 

 Now I need to deal with real life.... I wonder what a "Bad things keep happening to people we love" catcher looks like... 

Garrison Keilor read this to me yesterday and I wanted to pass it on. IF

If—

If—

By Rudyard Kipling 1865–1936 Rudyard Kipling

(‘Brother Square-Toes’—Rewards and Fairies)

If you can keep your head when all about you   

    Are losing theirs and blaming it on you,   

If you can trust yourself when all men doubt you,

    But make allowance for their doubting too;   

If you can wait and not be tired by waiting,

    Or being lied about, don’t deal in lies,

Or being hated, don’t give way to hating,

    And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;   

    If you can think—and not make thoughts your aim;   

If you can meet with Triumph and Disaster

    And treat those two impostors just the same;   

If you can bear to hear the truth you’ve spoken

    Twisted by knaves to make a trap for fools,

Or watch the things you gave your life to, broken,

    And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings

    And risk it on one turn of pitch-and-toss,

And lose, and start again at your beginnings

    And never breathe a word about your loss;

If you can force your heart and nerve and sinew

    To serve your turn long after they are gone,   

And so hold on when there is nothing in you

    Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,   

    Or walk with Kings—nor lose the common touch,

If neither foes nor loving friends can hurt you,

    If all men count with you, but none too much;

If you can fill the unforgiving minute

    With sixty seconds’ worth of distance run,   

Yours is the Earth and everything that’s in it,   

    And—which is more—you’ll be a Man, my son!

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Source: A Choice of Kipling's Verse (1943)

Dad read this to me when I was little.  I remember it, it had touched him as a child.  My Grandfather Lanham had lots of poetry in his mind even when he remembered little.

 

I think we need a daughter version.  I will work on that, Sorry Mr. Kipling.

 

 

Wild Wild Dreams

I know what they are.  They are about disappointment and loss and frustration.  They are about dread and fear and did I mention Frustration.  Crazy Crazy things.  Sulfur water parks, foaming water, not being able to find the place to start down the water slide. Large old houses that are crumbling but still in use and long hallways with people that seem at home but are not helpful.  Condo's I signed away to my ex-husband and he lived in them and I never visited but when I did they had hidden cake in the closet and the windows had no views but there were weird bathtubs and shower.   Lots of anger and breaking of things and ..... it goes on and on night after night. 

My Dad and Mary-E have these sorts of dreams.  I am going to make a dream catcher today.  I will find some flexible stick and some pretty strings and I will weave a place for the dreams to go.  I have lots of charms and the such.  I will make sure I go on a much longer walk than usual and see if that will help.  I will try very much to think about the dreams and process them and realize they are lots of stuck thoughts looking for a way out.  A voice they have been denied for a long time.

We all know dreams hold power in their own way. 

We also know I never would have signed away a condo to my ex....  

All things come to those that wait and wait and scream...

Chef Walter is leaving Children's hospital.  I am sure he is just retiring and taking a big fat pension with him but he is leaving.

Now they have a chance to find someone that cares about healthy food.  I wonder if they will do it. The listing is pretty interesting.  They are not looking for real chef..

Associates Degree
Three years of experience
Experience with whole food cooking.

Heck, I should apply.  I wonder if they need to know how to wash lettuce. 

More about Guliany

To Gülenay Gürbüz

On May 11, 2013, at 5:18 AM, Gülenay Gürbüz <gulenaygurbuz@gmail.com> wrote:

> hi there,
> they r really pretty, i love them. i'm still waiting the cards but nothingh arrive yet..
> there is no good news from my side; Gis GVHD appear (stomach GVHD) and i returned mu hospital room.. diareh and nauisea is killing me.. doc. started high dose steroid and increase the immunsuppresants.. also started fotoferes but nothing change.. it has been 2 weeks nearly and i cant resist my stomach cramps.. cant sleep always ache and ache.. cant eat somthng.. my god terrible days.. i dont know when its gonna be end..

May 11

Okay.  Well. Here is the deal.  This is really really normal.  It does get better.  Mary Elizabeth has had lots of problems and it was awful.  The steroids click in and then it gets better. The good news is your cells are working.  More later 

To Gülenay Gürbüz

Jun 6

Worried about you. Thinking about you.

To Gülenay Gürbüz

Jun 24

Still worried.  Still hoping life is stabilizing.  Mary-Elizabeth was able to go on a river rafting trip.  It does get better.  Hope you are hanging in there

Sent from my iPhone

Me Talk to me girl!!! worried, really worried. Mary-Elizabeth is doing well. She starts, today, her taper for her GVH again. There is a light at the end of the tunnel. You are almost to the tunnel. Love

To gulenaygurbuz@gmail.com

Jul 3

Talk to me girl!!!   worried, really worried. 

 

Mary-Elizabeth is doing well.  She starts, today, her taper for her GVH again.   There is a light at the end of the tunnel.  You are almost to the tunnel.

 

Love you.

 

 

Little Did I know she was indeed entering a tunnel.  Her last one on her journey.

July 3.

Gülenay Gürbüz hi i'm gulenay's mum.today she died she lost the war.she was in intensive care unit she stayed there 8 days. take care of your daughter and your mum

 

 

 

 

%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%

 

Each time I read the last message from her Mom, it takes my breath away.  I have been in contact with the Mom.  She has to have someone write the e-mails for her but we are still in touch.  I never found out what happened to our letters.  I am going to try again.  She is a mom without the great support system we have in Seattle.  I am sure she has lots of friends but I would be so lost if I had did not have lots of people understood.

 

 

My Current View of God and Cancer

Things change over time.  Sort of like the tree in front of my window.  Lots of changes during a year.  So God and I have had a very changeable relationship over the last couple of years

When I told Father Hightower I was furious with God, his response was really simple.  "God has big shoulders".   I loved what he said.  God could take it and I had space to give it.  Sometimes while we are in Cancer World with big scary battles no on gives you the right to grieve and to be sad and upset and angry.  We have all these emotions and it is necessary to transverse the whole gang in order to arrive back to a good place.

I am back in stasis right now.  God is not Santa Claus but more like the Tooth Fairy.  Prayers are answered all the time but not in the grand Charles Heston, God on the Mountain kind of way.  No big beard or deep voice but little things.  An unexpected check from a friend. A bottle of wine. A cup of coffee or a smile.  A meal, a load of laundry, a thoughtful act from out of no where.  A new medicine, a new protocol, a kind nurse.  It is all part of what happens and what is provided.

I look back and only now really understand the gifts that flowed towards us as we slipped further and further away.  We were hanging on for dear life and we were rescued and supported and given the things we needed in very concrete ways.

Monday I spent the day with Allistaire and Jai.  We had lunch in a clinic room while magnesium dripped into Allistaire's body.  We talked, we worried together.  Allistaire let her mom leave to fetch the Ipad for movie time. (No TV's in the clinic rooms.  Bad planning.) I soon learned that 3 year olds don't want to play the license plate game.  My phone failed to properly entertain but we all survived.

Some wonder why I would go to the hospital and spend even a moment.  It is very simple.  I have learned to listen to the little voice deep in my soul that alerts me to the need to be present for someone.  Sometimes I need to just be a hungry listener or a presence in someone's life.  Just a moment, a cookie, a smile, or some "yes, I understand" and head nodding.

Fall is upon us.  Today there is sun.  A walk is in the works for me. I have to beat several people who are ahead of me on my FitBit....

 

 

Fall

Every year I post pictures of my trees.

Every year I sit at my desk and watch the color drain out of the leaves.  It happens slowly and then speeds up.  first a leave or two develops a spot or two and then the inner leaves turn that lemon color and some read falls out.  It is never unexpected and nor it is a disappointment. 

 

The draining of the color is a signal the long sleep is coming. We are going to enter that ever so dark time. The time we want to pass quickly and without lots of dreary rain.  In all fairness, we have been warned it is coming. We know it comes every October.  We know there is an end to it.  Not like in Game of Thrones when Winter comes and just does not get the hint and end at a reasonable time. 

 

Cancer World = Game of Thrones.

When you enter it is not apparent what will happen or if the season will ever change.  Caregivers try to give you hope but you soon learn there is hope but it does not always apply to you.   You can hope it does but sometimes it does not work.

 

As Fall comes to the Northwest, Spring is coming for Mary-Elizabeth.  It is such a great thing to know.  It makes the coming rain and snow and cold and short days much easier to enjoy.

 

  Have you ever noticed the bits of strong bright red dotting the hills this time of year.  Red from another box of Crayons.  It is so so intense.  A bit of color to carry you through the next few months.

 

I am ready for the next phase to begin.  Ready, Able and Excited.

 

If only I could conquer Laundry.

 

Guliany, as spring approaches

From: Gülenay Gürbüz
To: sally lanham
Sent: Saturday, March 30, 2013 12:56 PM
Subject: 💛
hi again,
how are you? how is your life going?
i'm not bad.. i had a stomache (still continiue) they made me biopsy via  endoscopy.. result is not certain yet..
days are not passin.. i want to go outside because spring means energy.. but i havent got enough and also there is some prohibits.. so i'm at home all the day with my medicines :) just looking the sun and people behind the window.. thats my all activity..
i guess i lost my hairs :/ nearly 70th day and there is nothing :(
how is the weather and life in Seattle? what's the horoscope of Mary-E, when is her b.day?

i'm giving my mum's home address:


Name and Surname: Sevim Gürbüz
Address: Yenidogan mah. Toki Kume Evler C3-9 K.3 D.13 Talas Kayseri Turkey


my doc. and me, nearly 2 weeks ago.. normally i'm not such a blacky :) but getting well day by day..

 

Find a place in the shade.  Go outside for even 5 minutes.  It is very helpful.  I know the trapped feeling but it too passes.  Just sit somewhere.  There are rules but as long as someone is not cutting the grass or digging in the garden it is fine.  Fresh air is so healing.  I will send a card tomorrow and we will test the mail system again.  You are looking great and know it will be good. Have you read our blog.  Mary-E had the stomach thing and then had to be put on steroids.  If they do that to you rub on lots of oil and cream all the time.  She has horrible stretch marks.  Just a bit of warning.  Glad you are home!!!!

To

• sally lanham

 

hi sally,

how are you? how is Marry-E? i have problems with my cell phones internet :/ so it is late i know.. i'm not bad.. but just get flu :( fever, aches etc.. 3 months completed.. hope next days gonna be better.. 

when i got the letter i'll let you know.

This was taken at night in our neighborhood.  I love when the trees bloom.


April 10, 2013
Looking good.   I just mailed you a letter.  We will see how long it takes...  Hope you are feeling better

April 16, 2013

 

hi sally,

how are you? how is Marry-E? i have problems with my cell phones internet :/ so it is late i know.. i'm not bad.. but just get flu :( fever, aches etc.. 3 months completed.. hope next days gonna be better.. 

when i got the letter i'll let you know.

 

 

May 8, 2013

 

Hope Life is treating you with Kindness.

 

As I recall this was a pretty dark time for Mary-Elizabeth.  It does get better.  She is 15 months post transplant and we went both shoe shopping and dressing shopping.  It does get better.

 

 

 

 

 

 

 

Seem to be back on Track

Its so so weird.  One little, tiny thing can send you to the bottom of the board, sort of like the Snakes and Ladders.  You think you are at the top of the game and swoosh, down you go. A nasty snake rears it's ugly head.  And you start again, and again and again.  If you are playing with a 4 or 5 year old it can last for hours.  2 and 3 year olds don't see you cheat so it can end sooner.  Cancer is 4.5 years old and very very into games and winning.

We have crawled, fought, wrangled with fears, real and imagined and seem to be headed up down that last row but then.... Oh, then...

It has been two years exactly since we began the game again.  Two years.  Relapse, Life Flights, Blue Thunder, Fevers, dead bones, live clots, 110 infusions, a million doses of chemo therapy, lots of retail therapy.  Two years, you know the drill.


But, as I drove from Seattle after the GVHD appointment I realized I was starting to believe the really bad stuff could be done.  I could begin to think again, with some confidence about the future.  There was a future.  A sort of normal future.  A time past the next appointment.  A time when we don't look out for the snakes but rather only figure out what the ladders might bring. 


Taper continues, hair is growing back on the bald spot.  Little spots only some days.  The girls seems to have settled in a bit.  They are down to 5/12.5 and we are hoping they don't notice the little bits that are being taken away.


Dr. Flingenfliyer was great yesterday.  She is such a good doctor we are so lucky to have her to do the heavy lifting while ME is in Spokane.  They are going to see each other once a month until the two year follow-up, scheduled for January 6.  A week of appointments.  The 20+ procedure/appointment torture session she goes through once a year. Every organ system from head to toe is examined.  Again.

No complaints.  She is here, she is returning to health and she earned a B on her Physics exam.