Friday, March 27, 2015

Thanking God She had Acute Lymphoblastic Leukemia and not __________

Yes, it is one of those days.  The kind of cancer your child has/had does not make a difference.  There is fear and trepidation and panic and deep depression no matter what the diagnosis.  The test is that all of these kids qualify for a Make-A-Wish because of their condition.  They all have life threatening illness.  Those of us in Cancer World have seen even the "best" treatment fail, and fail miserably.   

Time and time again the kids die, relapse, fail to achieve remission, develop a secondary cancer, life long struggles with thyroid, skin issues, GVHD, weird hair stuff, infertility.

We all know the number of kids that  are diagnosed do better now but it is still a heart break with every single child that leaves the corporeal world to join the universe.  Heart breaking when a tumor comes back, when a close chemo buddy dies. 

Despite the loss, the sadness, the failure to cure, the great unknown about the future, we have to continue.  We have to continue to support each other, try to make a difference and hope the postings about death and relapse become less a part of our lives.  

Today we honor those that have died since of May 2014 of Osteo Sarcoma. The boys are gone. Katie, the tall lovely girl in the middle is gone. All gone too soon.  All shared the same cursed disease, all were loved and honored and valued and cherished.  All are missed.  Nicole, the lovely child on the left remains cancer free.  Or as they say in Osteo world.  NED, no evidence of disease.  

This is the best those families can hope for at any given moment.  NED.  But the docs are always on guard about finding the disease again.  Sort of like Dr. Carpenter, he told me I could relax for NOW.  I wanted it to be forever. 

So today, March 27, 2015  we are thankful and grateful for NOW.  Because NOW is all we can count on.  NOW is a good place to be. 

Saturday, March 21, 2015

Perception and Reality

She looks Great!

Who would ever know she had Leukemia.

Boy treatment must have been very successful.

How could you ever guess she has had 349 doses of chemo therapy?

We hear this all the time.  When the kids really look green and have no hair and have a tube sticking out of their noses, people know. 

It is the times when the hair comes back, maintenance begins and the less obvious effects are there but only if you know where and what to look for.  (never end a sentence with a preposition.)  If you are in the know, you can tell.  The small 1/8th scar at the neck, the back of the arm stretch marks only from massive prednison.  Chipmunk cheeks. The constant use of purell

.  The fear of salad bars. The squirming at the sight of the stagnant pool of water holding the ice cream scoops between servings.  

So much is not visible.  They have color in their cheeks, cute curly hair, a smile that does not quit. 
There is a curious inner strength and wise visage.  It masks the loss of brain matter, fertility, thyroid function, heart health, lung capacity,  hip, knee, and shoulder joints.  No one sees the places where future cancer lurks waiting to show itself.   

Everything is not what they seem.

Many friends and acquaintances knew we were spending time at the NCAA tournament.  Gonzaga played North Dakota State.  Gonzaga really struggled.  North Dakota State was tall, and powerful and could shoot like crazy.  Not only did they shoot, they sunk so many balls without touching the rim, I worried.   It was sort of crazy.  They pushed and went ahead on more than one occasion.  Gonzaga did not pull away, ever, for very far.  I was not willing to believe they were going to win until the the last 36 seconds.  

I talked with a friend this morning and I said it was hard game to watch.  "But they won by 10 points."

It made me think.  Many of our Cancer Kids "look great".  Have hair.  Have color in their cheeks. Are smiling.  Are back in school. College.  Playing sports, in the orchestra.   But.... it has come at a cost.  A huge emotion, physical and future cost.  Costs we can't even calculate as we spend time sitting in the waiting room for the next blood draw, the next LP, the next scan.  

It is always a good idea to step back, and maybe ask a follow up question. Take a moment to not assume everything is as it seems.  

Here is hoping to continued good health AND a better game tomorrow night. 

Monday, March 16, 2015

Dear Mary-Elizabeth

I'm  not sure how much you know about what I have been through.  I think you guess a lot but have tried to keep focused on your journey.  As you know WE had cancer.  WE had a relapse. WE had a Double Cord Blood Transplant.  But you have returned to your life and I am sort of waiting for mine to be found again. 

 I think I have been looking in all the wrong places.  It is such a weird thing to loose your way when  you are not ready to be done with your working life.  It just seems unreal. I am not ready to step back from the world just yet.  I still feel 18 and have lots to offer.  I am just wiser than I used to be.  I have seem more, felt more and lost more.  This next part needs to be good because, let's face it, I am a bit more than middle-aged. 

This last week I have had a chance to re-connect with some friends.  They say you can see yourself most clearly in the eyes of others.  It is always good to see a positive reflections.  And to be honest, I don't think it was just the good wine we drank.

I think I might have to turn back a bit to law. To figure out a way to use my specialized skill set but not be eaten alive.  I have realized that to do the Family Law piece the way I did it, I took on the pain of the family.  It was woven into my being,  I don't have that capacity any more.  My own pain and worry have filled that part of my being.  

Okay, let me see if I can figure that out.... 



Tuesday, March 10, 2015

Making Memories after Diagnosis

 There is a certain urgency when a child has been diagnosed.  We rush to do so many things. Memories have to be made and made NOW. 

What if these are the last of the memories? What if we don't survive long enough to go on our Make-A-Wish?  What if there is no time for  high school and college and marriage and the first job and the first car and the first broken heart?  What if? It is a panic that strikes the heart of each and every parent, grandparent, relatives and friends.  We have to make memories NOW.  We have to take advantage of this time, this moment, this......
everything. 

Well, take it from an expert, there are plenty of memories being made each and every moment.  Each day, each blood draw, each visit from the Child Life, Social Worker, Ukulele Guy.  Now granted not all the memories are good.  Treatment will erase many memories, but there will be memories. They will be a different kind and those that share them will be altered by the events. But  often there are bits and pieces of good memories.   

We are altered to our very core.  On a cellular level.  When your child faces amputation, total body radiation, red, blue, yellow chemo, and endless invasive procedures, bone marrow transplants,  it has to change you.  As you watch people you love perish and their loved ones writhe in  pain for moments, and hours and months and years, it is hard not to be transformed. 

Human beings are made up by the bits and pieces of who we are and what we learn and experience in life. We absorb things every day. We also are a product of what we remember.  Often we are a bit like Kimchi and need to sit about and wait until we are done.  But eventually there is a good end product.

The moment we hear the words "Your Child Has ____________________ we begin to incorporate the new "Memories" into who we are and will become.  

 It is a good reminder that we should value, treasure and work on this every single day....  

Friday, February 27, 2015

Anxiety feels like Hunger, serious and scary and crazy hunger.


How do I know?  You ask?  Oh well you can  be having a great day.  A sunny in Seattle day. A day where there are birds chirping, daffodil blooming, warm breeze coming through your new front screen door.  It can be a day that it doesn't bother you that the windows are in serious need of a wash.  


Then:

A phone call out of the blue letting you know a dear friend has died.  The very friend that has been on your mind because a mutual friend had died and you didn't want to tell him about his passing.  

I have had people in my life that have very short lists of friends and people in their life.  They sort of hide away and keep to themselves.  I always thought that would be a lonely sort of place.  Losing the people that have touched your lives in a special way is also very lonely.  

Mikie was a part of our entire Ballard house life.  He had a little dog named Betty Boop and all the matching items one would imagine of a great queen.  He planted and fussed and cleaned around the place.  He talked to everyone, he fed all the dogs treats, he painted, installed new doors, he went on endless walks with us and commented on every sort of event in the neighborhood.   

He was a funny little thing but he was a great friend.  A bit clueless sometimes about lots of things like giving my roll of butcher paper away when he moved because he figured if I let him use it to wrap his stuff, I didn't want it back ..... but I loved him.  Mary-Elizabeth loved him. The whole neighborhood loved him.  His presence is woven into our lives with bits of shiny pottery, a beautiful chair, a fun pot, a well planted traffic circle.  

He added great beauty to anywhere that he touched.  I have been looking for my pictures of him or of the Ken Cake we made him for his birthday.  Right now they are not easily available but had Mike been with me, he would have loved seeing the baby hummingbirds.  

He was loved. He will be missed.  The world is a lesser place because he is no longer here.   He and Dad can smoke small cigars together in Heaven. 

Monday, February 23, 2015

I have a pile of Poetry Books

I love words.  Turns of a phrase.  The sound the taste, the images they present to our mind.  I love how complicated our language can be and how there is a never ending coming and going of words.  It flows and ebbs, a living thing.  

My Dad read me poetry.  Until recently I did not know why.  Mom hates it.  Surprising isn't it given her love of words and books and all things curious. 


I think the English Teachers of the world are partly to blame.  I ran across this poem a couple of months ago.  It made me laugh and made me a bit sad.  Words are such a gift and in many ways they can be limiting. But they are to be enjoyed. 


This is the apology to all the students I asked to tell me what someone said.  I should have been a better hungrier listener.  


Poets have a lot to say, they only use fewer words.  



The Effort
                     
Would anyone care to join me
in flicking a few pebbles in the direction
of teachers who are fond of asking the question:
“What is the poet trying to say?”

as if Thomas Hardy and Emily Dickinson

had struggled but ultimately failed in their efforts-
inarticulate wretches that they were,
biting their pens and staring out the window for a clue.

Yes, it seems that Whitman, Amy Lowell
and the rest could only try and fail,
but we in Mrs. Parker’s third-period English Class
here at Springfield High will succeed

with the help of those study questions
in saying what the poor poet could not,
and we will get all this done before
that orgy of egg salad and tuna fish known as lunch.


Tonight, however, I am the one trying
to say what it is this absence means,
the two of us sleeping and waking under different roofs,
the image of this vase of cut flowers,
not from our garden, is no help.
And the same goes for the single plate,
the solitary lamp, and the weather that presses its face
against these new windows-the drizzle and the
        morning frost.

So I will leave it up to Mrs. Parker,
who is tapping a piece of chalk against the blackboard,
and her students-a few with their hands up,
others slouching with their caps on backwards-

to figure out what it is I am trying to say
about this place where I find myself
and to do it before the noon bell rings
and that whirlwind of meatloaf is unleashed.

Billy Collins
Ballistics

Random House 2008

Thursday, February 19, 2015

Mary-Elizabeth has become a great writer.

In my life time I have been through cancer twice and spent 10 year dealing with it and its effects, but I am still standing here. I am lucky. I call the time spent dealing with cancer as being in  Cancer World. Unfortunately, ever day new people are thrown into this world, floundering trying to figure out what has happened. It is this reason that my mother started a nonprofit called The Wishing Rock Project. This is a small, but growing group of people reaching out to families, at Seattle Children’s Hospital, whose child have been touched by cancer and whose families are struggling to survive being part of Cancer World. We create and deliver bags filled will essential and special items that might help as the new families begin their pain staking battle.  We found the items really helpful and while the collection is sort of weird on the surface, each item has a deep meaning.  



My mother has been delivering the bags, but I knew I should be the one delivering so that the parents can see that surviving is possible. Despite my knowing what was right, I was terrified because I wasn’t sure how seeing a child in the same position I was in just 2 and 3 years before was going to affect me or how many bad memories it would bring back.  I finally  summoned up the courage to deliver a bag to a family that had been in contact with Wishing Rock.  I arrived and introduced myself to the parents and the look of hope on their faces when they saw me will stay with me forever. I talked with the mother sharing my wisdom of what to expect and answering questions on how to deal with various situations that might arise. The healing power of Honey Nut Cheerio, Metro Mint Water and cheese cake can never be under estimated.   I also sat down with the 6 year old girl and told her despite how yucky she felt right now, things will be better. Showing this family that there is a light at the end of the darkness was the best feeling I have ever had. I learned I was strong enough to help others in the same situation I had been in and make their scary situation a little less scary. I now deliver bags when I am able and do not plan on stopping anytime soon.