Tuesday, April 30, 2013

Food Garden at Seattle Children's Hospital?

Oh, I will be taking pictures and asking questions today. 

I have decided I have two passions in my life.  One is increasing awareness of the need for bone marrow and double cord blood donation and the other is making the food they feed the cancer kids better.

I am going to visit with the new head of dietary today.  Pictures later....

Monday, April 29, 2013

Fellow Travelers

I used to teach English in Dietrich Idaho.  It was a great experience. As I look at many of my contemporary's children and realize they are as old as I was when I started teaching, I wonder what Wayne Perron was thinking. 

He hired me over the phone because his wife Carolynn thought I wrote a nice letter.  It was an adventure to say the least.  It was hard, and challenging and frightening all at the same time.  But during those years, I picked up some great friends. People still in my life. 

I left Dietrich after 5 years for law school.  Again another adventure.  One filled with conflict and anxiety and angst.  More deep and lasting relationships.  The sort of relationship that a moment, a hug and a cool beer can be all that is needed to melt away the years. 

I came to Seattle and built a life.  A good life.  A life full of friends and colleagues and clients and family and a faith family..... a life.  A life with deep deep roots.  Sort of figured out I would spend a number of years here continuing our life. I tried to escape to Eugene once but the planets did not align and here we stayed. 

It was very good we did because I was not aware of a new adventure and challenge I would face in 2004 and again in 2011.  Never figured my whole life would be tossed up in the air and hijacked not only once but twice.  I would be making new friends, new fellow travelers to add to old.  I have again gathered a new clan of Mom's and Dad's and other assorted loved-ones.  It is not a journey I wished to take.  It was a journey that swept me along for awhile before I found my footing in this strange new place called Cancer World.  

I looked at my daughter today as she semi-slept waiting for a blood draw and realized she looks great compared to others in the waiting room.   We are almost there.  We might have spotted the tunnel. I can now see the end again. 

We were sitting in seats we had occupied when we went to see the nurse for her Pre-Op in August of 2004.  She was going to have a biopsy taken from the bump on her head.  As I sat in those very seats so many years ago,  I said a small prayer and thanked God I was not waiting for the Hem/Onc docs, just the brain surgeon.  How weird is that?

Well as odd as it may sound, our fellow travelers have made this a journey worth taking. 
 
 
We are headed back to this child.....   one day, one blood draw, one appointment at a time.
 

Saturday, April 27, 2013

I abandoned Dante but HE IS BACK. Level 8 has lots of levels.... Bolgia 1.

So conscious fraud and trenchery.... interesting if you think about it. The other levels are a myriad of bad human behavior like murder but deep in hell and in Dante's mind this was worse.


Bolgia 1Panderers and seducers march in separate lines in opposite directions, whipped by demons  Just as the panderers and seducers used the passions of others to drive them to do their bidding, they are themselves driven by demons to march for all eternity.


Pandering: is the act of expressing one's views in accordance with the likes of a group to which one is attempting to appeal. 

In cancer world we really don't get much of this, at least at Seattle Children's.  We do see the adds for places that are almost guaranteeing a cure but they must have anti-pandering classes all the time for everyone.  As parents we have a list of stuff we want to hear.  We want to hear only about unicorns and rainbows and that there was a mistake and it is all over.  

We do a fair amount of "Self-Pandering" .  We often don't want to hear the truth and we do what we can to make sure we only hear the things we want to hear.  She will be okay, she will have a long full life, she will be able to have children because 1% is really good. 

Maybe there was a special level in Hell for panderers because as a group, we fall so easily for the good news. 

Seduction is the process of deliberately enticing a person, to lead astray, as from duty, rectitude, or the like; to corrupt.

I read this and laughed a bit inside.  Oh are we easily seduced as a group.  Just watch 2 minutes of commercials.  Creams and pills and instant weight loss.

Our biggest fault is if we just follow the rules, inject poison and death ray our children, it will all be okay. Maybe just one more round, one more poison.  Maybe if we just give it time, maybe if.....

We are all seduced into thinking it is going to be okay.  Sometimes it is not. 

I don't think there is any harm in hope and I believe in Unicorns 



 


Friday, April 26, 2013

You Know Mom...

I am done with being treated for cancer.  If it comes back again, I am not doing it again.

Yes I do.

Okay.  So what are we doing to do for Alistair?

I don't know yet. Lets think about it.

Okay. 

Where are we going to have pancakes?


We were just standing out side by our new little free library and those words came out of her mouth.  No big talk, not deep discussion.  I told her today about Alistair's failure to go into remission and the  new plan.  We know what that means on many levels.  While we pray and plead and light candles and pray some more and boost our Hope Levels, we know that this is zero hour, dark thirty, back to the wall time. 

I asked her if I did the right thing by telling her and she said yes.  Cancer takes so much away but adds a new dimension to your life.  It makes you cautious to get close to people in your own life boat but the people in the boat are really your best friends.  When one is having trouble and in danger everyone is in danger. 

There are no words right now.  We are going to go have pancakes and drop by the church and light a whole bunch of candles. 

Thursday, April 25, 2013

Questions that Cann't be Answered.

Why is the D only good if it goes in one direction?

Where do you live?  By the Zoo

Why do you live so far far away!?

Why don't you have hip hop music on our IPOD?

Why don't you just hook up to Pandora?

Why didn't Jordyan share her brown pencil?

Why are you fat?

Why is the clock moving the same all the time?

Endless whys. 

Three days with those under 8 is good for the soul.  There is no doubt about it. 

I think these last few days have helped make me read,
to catch up on Facebook and my own e-mails.  Sometimes God knows how much your "I am can take anything that comes my way" meter needs to have in reserve.

So my question is WHY DOES ANY PARENT HAVE TO HEAR THE WORDS HOSPICE?.

I have written and kvetched and whined about lots of words.  Cancer, relapse, remission, GVH, Kidney Disease, Chronic, AVN... my list is long and complicated. 

I have feared and envisioned works like Hospice and Quality of Life.  I have never had to hear them come from the mouths of our much trusted healers. 

Alistair's parents have heard these words while I was answering a million other questions.

They are going to try one more time, one more round of chemo and a million and one more prayers.  http://conglomerationofjoy.com/2013/04/23/out-of-body-experience/

I can only report, I am beginning to really need some answers. 

And soon THANK-YOU VERY VERY MUCH.

Here is the link to Jai's Blog.  I am out of words and answers for today.








Sunday, April 21, 2013

SO How are things going? Good?

Seems like such a simple question.   Sort of like "how are you?"  How to answer.  There are lots of ways to answer this question but generally people just say "Great."

It is a good question and we ask it as a matter of course.  As the person answering we always makes a split second judgement.  Do we share the reality of what is happening or do we just say... "Fine" ?. Most of the time we say fine.  It is easier than the rest of explanation. Usually people don't want to really know and we don't have the energy to dump on them and then take our energy and try to make them feel better about how bad it is.

It is always nice to ask and I would never ever suggest you don't because that can be awkward.  On more than one occasion there was a moment when I mentioned Mary-Elizabeth and people were physically relieved and stumbled over a few words that when translated meant:  Oh Thank-God I didn't' want to ask if she was alive.

Cancer Parents are not the only ones who do this. There are so many things in people's lives they don't talk about.  Deep disappointments, loss, pain, fears and simple terror.

Our brains help us cope.  I was listening to NPR and a doctor from Pakistan was explaining how his people coped with constant bombings like the one's in Boston. Their country has been under a sort of self attack for decades.  He said you just move on.  You know it is there, you go on with life.  You never forget but it is not a life stopper. 

We see kids with no hair, braces on their legs from, ports, piics, catheters into their brains.  Their haggard parents have given up jobs, and careers and marriages and any semblance of normal life.  But, faces are covered with smiles and gentle words are said to the children. We know how hard it is to have a cancer kid a CK but we also know that it could be worse.  We all move on and make the best of each moment because we know it could be a lot worse. 

"So how are things going? "

"Great considering?"

"Tell me more.".............
or buy me a cup of coffee, or offer to take out the garbage or.......








Friday, April 19, 2013

Good news is such a relief

So we go along and we do appointments and blood draws and more appointments.  It is all relative.

We rejoiced in the fact Mary-Elizabeth does not have to plan her life around life long  blood thinning with rat poison. Good news?  I a weird sort of way it is good news. She is 20 years old.  She should never have had blood thinners in the first place.  But as a Cancer Mom one begins to grasp at anything that is not a disaster.  Good news is something not a disaster.

Second bit of news.  Her triglycerides are 300.  300 is a celebration in Post-Transplant, not off immunotherapy world.  In the real world it is a disaster.  300 would set off bells and whistles and drugs and more worry.  In Cancer World it is a huge triumph. 

We take them where we can get them.  "Oh we only have 34 more days of isolation and antibiotics."  "My child is only stage 3 not 4."  "Mary-Elizabeth has the good kind of leukemia we are so lucky." 

It is a lesson in how amazing the human spirit can be when pressed with imminent disaster.  This sort of thing is going on in Boston right now.  "I only have shrapnel wounds right now." " I only lost my leg." 

We all have the ability to make the best of a bad situation.  It takes time sometimes to move from despair to positive but the ability is there.  

It is raining today but look at the wonderful picture of nighttime raindrops I was able to take last night.   

It's all good.  Not our choice, but it is all good.


Monday, April 15, 2013

Letting Go

As we travel this path back to some sort of normal we encounter people diverted from the trail.  Their child dies.  I so remember the first child I knew dying and how it affected me.  After all this time one would think it would be less of a shock or painful or devastating.  It simply is not.

If you really know the family there is this long and I mean usually two or three weeks from the time of "hospice" to death. During that time there are all these watching of the signs and never ending hope.  "She smiled today and I think she is going to beat this thing."  This end time, this long and difficult process just has reaffirmed for me how much life can be left in a person after so much pointed constant attack of treatment.  


As a parent it is so painful to watch.  After observing many children die, you get better at helping.  Less thrashing around and agonizing and more positive action.  A long heart felt hug. A basket of china tea cups and tea for the waiting. An extra small pot pie from MetMarket for a meal.  A listening ear. 

It is important to agree every time someone is grasping for hope.   There just isn't any reason not to do so.  The letting go process is long and hard for cancer parents even thought we have seen the need so many times before.  We all start it because we are all faced with the loss of our child and each child is "our child". 

We all support each other because we are the only one's that understand this terrible world.   We know the fear, anxiety, and horrible dread of what might become our reality.  We all plan the funeral, or memorial or what ever the final event will be in our minds during dark times.  Some would scream at us because we are commanded to "stay positive" and not to even think the worst.  We have to think about it and know what we would do.  After the death of a child many often comment on how well everyone handled the impossible efforts of planning the funeral.   It is because they thought it through BEFORE it became unfortunate reality. 

I am watching a mom right now that knows in her heart her child is not going to make it.  Their journey is a long slower version but the handwriting is on the wall.  She is spending some of her energy on making the journey less difficult for those in  a like position.  Sometimes it is all you can do.  Help someone else. 

Lots of parents are upset as their children leave home and go to college or get married.  From the moment children enter our lives we have to start letting go.  We have to let someone else hold them, feed them, care for them.  We have to let them find friends, walk into school, have a sleep-over and a date.  It is our job to let them go and be the best they can be.   But never in all our planning and hoping and dreaming do most have to think about letting them die.

Of course it could be worse, they could become Republican Dawgs or Democratic Cougs. 
 

Saturday, April 13, 2013

She is an Inspiration.

So this Mama is an inspiration.  She kicked her first babies out of the nest and before she did so she had begun a new nest. 

I saw her building the new nest by accident and have decided to follow her as she goes.   This nest is now very empty but survived the fledging.  Sometimes the nests explode during the process but this one remained intact.

 
So she is at it again.  I found her tree and her new home and she is sitting.  I am going to visit in a couple of weeks. 
 
 
 
Everything she does is based on instinct.  She builds, she lays, she feeds, she says goodbye and she does it again and again and again and again.  Just like the rest of us.  We keep at it.  Nothing stops us from doing the best we can for our babies.  Lots of power in this tiny tiny creature.  It gives us faith we can do anything but she can and does and then does it again.
 
 

Friday, April 12, 2013

Landslides and the little pebbles that follow.




Whidbey Island let go a couple of weeks ago.  In the middle of the night for no apparent reason.  Bits and pieces of it continue to slide.  I looked a the before pictures and it is clear this was not the first slide and won't be the last. 

The land below the cliff was covered in trees and well vegetated.  It had been 100 years since the last slide and everyone had forgotten.  Our memory can fade and we don't remember who put the big stone ups at Stonehenge or what happens if one group of people declare another should be wiped out of existence. (I am an old history major.)

But the important thing is memory fades.  On a conscious level at least. We as a group no longer see a saber tooth cat and have a flight or fight reaction.  We see it as novelty and empathize with our fore fathers and mothers.  Simple. But somewhere deep in our souls we carry the fear of the next cat attack.  We have transferred the fear to other things both big and small.  Cars, disease, asteroids hitting earth, choking on Cheerios, germs. 

Cancer Parents have another list of fears.  Scans, blood draws, MRD results.  It has one big word attached to it,  RELAPSE.  It haunts us and with good reason.  As a parent when the first diagnosis happens, we focus on Remission, then cure.  We work on getting our child out of intense treatment and into maintenance.  We hate being in maintenance because the visits and blood test that reassure us of continued remission are few and far between but it is a sign we are headed to cure.

But as parents living in Cancer World there is this niggling fear RELAPSE is living around the corner still.  It is alive and real and very present.  It is that small pebble letting loose from the slide signaling the big slide. 

It is not possible to live any sort of life in fear of horrible things happening all the time.  You have to let your life move forward. It is important to keep making plans for the future.  It is not mentally or emotionally possible to keep watch all the time.  It is necessary to keep the RELAPSE monster at bay.

We are not even close to the edge.  Things are beginning to firm up and it seems we are going to be on solid ground.  I am going to look away from the once crumbling cliff and hope for the best.  When I encounter a mom or dad with a hopeful story about how long it has been since the last dose of treatment, I am not sharing our story.  We never know if the cliff is going to present itself.

Tuesday, April 09, 2013

Someone Asked me about my PTSD

I don't have Post Traumatic Stress Syndrome.  What a silly thing to have at this point in my life.

I have Traumatic Stress Syndrome because we can't seem to get to the "Post" part. 

Jaxon, a lovely little child, died today.  No one was surprised, no one is shocked.  We are just sad. He was sick for a very long time and nothing worked.  Some kids have that problem.    He will be remembered for his smile.

Our Small Circle of Moms.

We all know that Meb has a dead part of her bone.  She is thankfully not in pain and her steroids are going down but it is a problem.  It is not a huge, pull it out and replace it problem but it is of "Grave Concern".  So how do we address it you ask. 


Some swimming, some gentle walking, some yoga, some high calcium rebuilding chews, do-able stuff.  So yesterday we went to Seattle Children's before even the Valet guys were awake, (7:30 am).  We settled into the Physical Therapy waiting room and it was very quiet.  One poor child with over active nerves in her ankle beginning and intensive 2 week rehab program, and a Chappy kid. 
Dr. Chappy Conrad, is a gaulky awkward guy that takes out bones and rebuilds them in kids with bone cancer.  You can tell the kids, bald, braces on their legs and usually a spot that just won't heal on a long incision.  We were all chatting and in came a child, 6ish, with a pregnant mom. 

Child sounded like a TB patient with snot going everywhere when he coughed and sneezed.  We did not stay but were luckily leaving.  I suggested to William's mom they get into a safer place and the snotty child's mom was not happy.  "He has asthma, he is not sick!"  I left.  I did not have a chance to let her explain how stupid I was to doubt her judgment.  Now, I would have loved to talk to her about donating her cord blood as she was obviously pregnant but had to let it go.  We were off to another clinic, not at the hospital.

Here is my general apology.  I am so sorry I hurt your feelings.  I would do it again. I won't expose her to anything if I can help it.  I certainly am not going to sit in a small confined space with a leaking child. 

We all have to do what ever it takes to keep our kids safe.  Cancer Moms are a crazy bunch when it comes to such things.  We live every day with huge amounts of fear and trepidation.  The smallest thing can push us over the edge.  And once we are over that edge, we don't recover very well.  We have no reserves. 

So if you encounter us and we shun you with disgust, please don't take it personally.  Now I have to find my dinning room table.   

Sunday, April 07, 2013

Tried to blog on my phone to No Avail.

We were visiting and working on things at Grandma Mary's.  She is working on moving to a new place.  The place is yet to be decided but there is definitely a downsizing that needs to happen regardless.

Things are leaving the house.  It is freaking me out the walls are being emptied of paintings and such.  Not that they don't need a new home but I guess I hate empty walls.  Since they are the last to be decor4ated, I don't like that they are the first to be undecorated.  Walls with tastefully added paintings and other forms of art give a place warmth and depth and a feeling of home.

We have had lots of homes in our lives.  I don't think any of us are really attached to the house as much as the people in it.  It is hard to know Mom needs to find a smaller place. She and Dad had a great run in this place.  This new place will be the first place Mom has ever lived on her own.  In essence it is her first apartment.  She is from the live at home, go to college, get married generation.  Her children have all explored with a job and an apartment in the middle somewhere. 

She is looking at three places.  The place Belle and I went to look out was very nice.  But it was Beige.  Really Beige.  I asked our friend Ruth about it and she said lots of them were pink.  Oh, I could never live in beige housing.  She and Amy (Alex's wife) are going to check out a couple other places.  One is the Eugene Hotel.  I have visions of Eloise at the Plaza sort of thing but then I have always had a very vivid imagination.

New events, new changes. They just keep coming.  I am glad I have learned to like roller coasters. 

Oh, great thing on the way home yesterday.  We watched a plane take a
 
Tree at my old apartment.
glider up and let it go.... How cool is that!!

Monday, April 01, 2013

Year of the Snake

THE WATER SNAKE        

Water Snakes are influential and insightful. They manage others well and tend to be good for organizations to utilize as staff. They are quite motivated and intellectual, very determined and resolute about success. They will have what they desire, despite the conclusion or outcome they generate because it is worth it to them to not only be recognized for their efforts, but to be rewarded as well. They are affectionate with their families and friends but do not show this side of their personality to colleagues or business partners.

So this is my year.  I remember the last time it was my year and I don't really remember much. It is true, I am a water person, unless you expect me to get wet.  Love water aerobics, hate getting in the pool.

Mary-E and I are going to Eugene for a few days.  Belle is flying from Marshfield with a mission.  She wants to clean out the garage. Mom's closet and the kitchen.  Mom is discussion the need to move to an independant living place.  She has had a hard time since she tried to take the 25 lb turkey out of the oven.  Had she been at an assisted living place, there would have been someone to pick it up for her.

This is sort of mom going to the dorm.  Kind of hard to process but she is the master of her own fate and wanting to make the decisions. 

Because Belle is going to be there, Mary-Elizabeth is going too. We are going to have a good time.  I figure that if we are out of town, we won't have any appointments.


I plan to do some serious plant stealing, plant shopping and then some Alex pottery filching.  Always fun to see what Alex thinks is garbage.  As soon as I put it in my car it is a treasure.  Lots of family fun time.