Vigils....

We wait, we wonder, we watch, we fiddle, we pace, we glance over our shoulders, we wait some more.   We check our phones, we check our Facebook, we look for new e-mails, we look for new text messages, we look at Twitter.  Somewhere deep in our souls, we know what we are waiting for, and we don't want it to happen, but we can't stop it.  We can't change it.  We just wait.  

Two weeks ago Allistaire left Seattle Children's Hospital for the last time. Sometime early this morning she took her last breath.  True to Allistaire's sense of self, she fought for those last few breaths. 

Allistaire was not ready to go.
Sten wasn't ready for her to leave.
Jai never imagined she would have to leave so soon.  
Solve was certainly not wanting to lose her baby sister.

I don't even know what to say. So I will do the next best thing.  

The Allistaire I knew and came to love believed in magic..... She found it in her short life. 

The vigil has ended. 

  

Bright Sides

"Look on the Bright Side"

I am sure I have said the phrase a million and one times.  I am certain I have heard it a million and two times.  It is sometimes said without thinking.  It is in our repertoire of things we say when words fail us. It is an easy thing to say but a hard task to accomplish in most instances.  It is okay to feel sad and afraid because sometimes horrible things happen.   But the gift of time often allows for healing, understanding, and acceptance of any bad situation. 

Sometimes there is no "Bright Side".  Sometimes both sides of a penny are dark and gloomy.  It is not always possible to happy about the fact your child has relapsed AGAIN, and the odds are similar to the odds of winning the Power Ball.  I know there are times when news hits me in the gut so hard, I can not breathe.  I am shocked in a time in my life I don't think I can be shocked by anything.  It is so hard sometimes to ramp myself up to see a friend, or break some news to the family or worse yet, to your child.  
I am not talking about our family.  Things are going great right now.  Mary-E is cooking along and will graduate after only four years of schooling.  She will do so being ever so close to graduating with honors.   She is ready to take on the world in one way or another.  

But day after day, week after week, I am holding my breath, knowing this will never be a solid state of being.  Many say to me "Look on the Brightside." "Don't dwell on what could happen."  "Don't be pessimistic."   While knowing each day could bring new cancer or a new side effect is not being pessimistic. A bit of well-placed pessimism is simply my reality. It is just that little niggling voice sitting on my shoulder reminding me to value and enjoy every day.  It lets me forgive myself for my many imperfections, my never organized house, piles of self-reproducing laundry,  my endless to-do list.   
It makes me try harder to do things that make a difference in people's lives. It makes me balance what I want.  I want to spend time with people that make my life richer and more interesting.  My house is not perfect, but six people are coming for dinner. The lamb is a bit spicy but then why did God make sour cream? 
The bright sides of my penny bring me back to this moment in time. This is where I stay, knowing the penny, no matter how dark, is still a work in process.  There is a good chance it there will shine on both sides.  

Rest-in-Peace....... Really

I suppose if someone dies in a war. Or if they lived a life of hardship and stress.  If they are from a country where bombs drop all the time.  Rest-in-Peace would be a great thing to say.  Simple, life-affirming, considerate. 

But... you can hear "the but" coming can't you.  
 BUT  I certainly am not tired.  I don't need to rest, except for nap time some days.  I have way too much to do.  I don't have time to rest.  I don't want peace and quiet.  I want to make a difference in this world. I want to make sure it is a better place than when I entered.  I want to find out stuff and learn stuff and grow stuff and read lots of good books and make up countless recipes and have wine on the deck, and the list is endless.  

I don't want to Rest-in-Peace.  I want to RIP through life knowing it is a precious and limited thing. If I feel like this at 60, I am sure the children we watch die, day after day have other plans.  Seattle lost another one on Sunday.  Ahmie Njie was only 14.  She was full of life and cancer.  They don't go to well very often.  Cancer is atrocious at getting along with its host.   It kills.  In unthinkable, painful, sad and depressing ways.  It takes so much with it when a young one dies.  
Ahmie is another victim.  One that touches each of us.  I didn't understand how it all worked until I was reading a book that talked about a quantum physics concept of "Quantum Entanglements."  There are those that believe particles in far reaches react with each other even when they are far far from each other.  Cancer Moms have the same thing going on with each other.  We connect when we share our stories, and we continue to feel the story as it proceeds.  We react. We respond. We reach out. We recoil. We feel.  The empathy runs deeps and long and reaches across the boundaries of the world.  

Ahmie's Mom chronicled her story and shared the ending with the world.  I don't have the ability to understand or know what Gienna is feeling or thinking right now.  I would not presume to have words or answers or even know the right questions to ask.  I do know there is an ache in my heart.  A need to take many deep breaths.  There is an empty place in the universe.  A void was left by a child that was not ready to rest.  She had too many plans and too many ways she wanted to RIP through life.  

We have become "Entangled".  

Cancer Moms

WE are Strong  and we are determined.  We are also very tired.   It was great to spend some time with my peeps.  It is amazing when I look at this picture.  Some have kids that have died. Some are trying to keep their children alive. Some have faced horrible decisions and struggled to return to normal.  We are so so thankful to have met and shared the journey with such powerful people.  

When I look at this picture, I realize there are bits of joy that leak out no matter what.  No matter how bad it has been and how hopeless it seems.  Joy wins.  

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. 

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. 

What a Difference a Moment Can Make

So, I have been dealing with some issues with some "kids" .  They are in the Millennium  generation or better known as the ME ME ME group that we have raised. This group was given way too many participation medals and pats on the back for mediocrity. Their tool box to deal with life in seriously deficient. 

 I remember my dad being upset when I mentioned there was not a dishwasher in my new apartment.  He was shocked that I would even notice.  I heard the lengthy "When  was a boy we lived in a Chicken Coop" recitation.  I then mentioned to him that we had never lived there and we always had a dishwasher, and electricity and plumbing.  He sort or looked at me funny and smiled.   He had not thought of that before. 

So now everyone has a cell phone, most of them "smart".  There are cars that are more than transportation.  They have a million I-things and flat screen TVs and fast computers and faster WiFi.  And we wonder why they are so flummoxed about hard work and responsibility. When and where would they have learned? We never gave them a chance. 

They want it all. They want it now. Everything is not enough.  And when that does not work, they are a bit miffed.  That is their bad press.  But there is a flip side to all of that.  They live in this moment.  The Dali Lama would be impressed with their ability to only focus on NOW.  Not a moment in the future or dwelling on the past, only the NOW.  Granted they need to worry a bit about kindness and giving back and things like that but they have the NOW thing covered. 

But you can get stuck in NOW. I am having a hard time seeing a future and making any plans.  I am stuck by Cancer World glue.  How dare I be so arrogant and make plans for something more than what we are doing today? How dare I believe there is a moving forward?  I have a hard time making plans very far out.  I know the bridge could go up as I travel over it. 

Cancer World takes lots from us. It also teaches lessons.  I am sort of slow on the patience and acceptance part of it.  Not happy when I don't receive answers of certainty.  I am sure they are not telling me everything and I have come to realize why.  Too much to know, too much to take in.  

Cancer World reshapes our reality and shrinks part of your world view.  You learn to focus on this issue, this moment, this point in time.  There is always a goal you are working toward but your life is peppered with the knowledge the bridge might go up at any moment. Any instant. Any nano particle.  

However, In physics, moment is a combination of a physical quantity and a distance.  

So I am going to work on thinking of NOW as a step.  A step in the right direction. 

I will work on really thinking about each moment being a step.

Not all Roads Lead to Klamath Falls

As you drive back and forth from Seattle to Visalia California to see your baby brother you seen a repeated sign:  Klamath Falls.  Next Exit  Klamath Falls. Now Klamath Falls is sort of inconsequential place in the middle of Oregon. I don't know if anyone goes to Klamath Falls.  I know very little about Klamath Falls but after you see the sign enough you begin to  wonder if you should go to Klamath Falls. 

It became sort of a joke.  The kind that develops when you have crossed over a river 36 times in a very short period of time.  Sort of like the License Plate game. When you are on a long drive this is how you make the miles pass with alacrity.  Lots of roads and exits lead to Klamath Falls. But I think in retrospect, it is a place to be avoided.  Sort like ICU or Hospice.  It is a better to avoid it at all cost and hope the Exit passes you by, each and every time.  
+

I just spent a few days driving to and from Visalia with my mom. We drove I-5 and then at Sacramento headed down 99.  Down the center of the San Joaquin Valley.  Rows and Rows of unidentified trees and crops and rice paddies whizzed by as we drove 80+ miles an hour. When the fog cleared we could see from the Sierras to Coastal range.  Flat, fertile, under cultivation.  Almost a cosmic adventure.  Miles and miles of straight rows, small dusty farm towns. Disturbing feed lots, fields populated by field hands and their families.  It makes you think.  It makes you wonder. It makes you appreciate what shows up in the stores.   

The vastness of it all.  I of course want to know how the valley was formed.  As you drop out of the end of the Cascade Mountain range and leave mountains and foot hills behind, it makes you wonder.  How did this all come about?  Or at least it makes me wonder.  

I spent the whole trip wondering where the Sacramento River starts?  When did they built the Lake Shasta Dam?  How many people live in Myrtle Creek?  What was Happy Donut before it became so happy?  When did the first settlers realize they could grow Oranges?  Who brought them to the valley.  Why do we dye ripe olives black?  When did Zinfandel Wine become dark read and not a Rose?

My list of questions goes on and on.  But then travel does that for you, even a short jaunt to visit your brother in his wonderful house with an orange tree and never ending closets.   

My time away also kept me away from many things that have filled my life these past few years.  Three years and 5 months.  It was a bit of time not to dwell on the stuff that makes "Klamath Falls" an unwanted destination.  

I realized you can run but you cannot escape. Just like when you first enter Cancer World and watch your life go away, you realize things don't stop on command or when you are not watching.  A child was buried, several were mourned. More were struggling. Some were given hope, some were given guarded hope, some were just waiting to find some hope.  


Hope is a good thing. It helps us move forward.  It often even answers some of my questions.

Transformative Journeys

Itzhak Perlman used two canes to plop into his seat. He took a very long time to reach the stage.  Polio took his mobility but not his genius.  
He sat down and the first violinist handed him a century's old Stradivarius. He alerted the orchestra and they began to play.  A bit of Bach.  If you closed your eyes, you could see the ball room and the big dresses and the smokey candles.  We were transformed for those few minutes to a another world. A world we dream about but really would not want to inhabit.  It was cold and hard and children died of simple colds. Women died in childbirth and only the rich had enough to eat.  Hard hard world. 

I am hoping sometime in the future, people will listen to the music of John Williams and remember a time when children were hooked up to machines and poisoned
to try and cure them of Cancer. They will look back at this time and shake their heads and wonder how baffled we must have been. How hard it must have been for us to put our children in the hands of such barbaric spells and cures in the name of science and more life.  We look at the machines and the labs and endless tests and hope for healing.  This is the best we have "for now".  

When you are in the middle of Cancer World you can not have a breakthrough come fast enough.  It can not come with enough alacrity. The entire process seems to drag on forever.  It is hard to see how far we have come because we are in the middle of it. It is hard to see that progress is being made, at all.  We only see that our children are suffering and we are not able to do anything about it.  

Today is the day Pearl Anne and Ellie Mae's life giving stem cells were infused into Mary-Elizabeth.  It was three years ago.  36 months, 156 weeks, 1093 days, 26,236 hours, 1,564,160 minutes.  In some ways, it has slipped by with lighting speed.  In others, it seems likes time has stopped.  In it's tracks.  

I realize when I let myself look back, I see we have in fact been on a prolonged trek. But like the long walk on crutches to the stage for Itzhak on the polio stricken limbs. There has been progress, there has been triumph. There has been an ability to move forward.  It has not been in vain. 

Moments

We keep marching forward but sometimes it is necessary to step back and spend a few moments in the past. 

I found this picture with some other's.  I don't know when it was put away but sometimes it is good to see take them out and look.  My daughter will laugh at the glasses. Jerry Tapia will be dismayed that he ever ever did my hair like this.  I am amazed that I knit three sweaters for Mary-Elizabeth and her cousins.  I am amazed I convinced a guy from Astoria to come to Cannon Beach and take the family pictures.  We are sort of once in 20 years sort of folks. 

I am still pounding away at becoming employed.  Mary-E and Tucker are off doing college things.  The world keeps moving forward no matter what we do but it is good to take a few moments and pause and think about the good things from our past. 

Boy what a difference 20 years can make.  WE both are still very very cute. 

The Comfort of Continuety

There is comfort in knowing something of value comes from our lives.  Some little piece. A moment, a thought, the solution to the common cold, a great novel. Something.  Or maybe it is someone that cares we have gone. 

It seems silly to put much effort into it but as a person who studied history.  We spend most of our efforts on the big events. The big people and artist and the musicians and the like.  Even they have bits of their lives rushed over and forgotten.  The Dr. Seuss with a new book after 50 years, a manuscript found in the basement closet. 

So here I sit.  With a bit of deep sadness that has seemed to come to the surface.  It comes from finding a box of pictures.  These are mostly formal pictures but as I looked a the framed pictures, I realized there will not be any more of new humans that look like the rest of the ones in the box.  This group of genes is done.  No more high cheek bones and almond eyes.  No more big smiles that accentuate round cheeks from under a fringe of brown hair. No reflections of the past, Grampa's eyes, Great Grandpa's Nose, the weird family web toes.  

Does it matter?  Not really.  Will there be children that love the Stacking doll or Grandma Mary's ax or Great Grandma's Turkey Roaster?

Of course there will. We are a family of vast acceptance of the new and the interesting.  We just add some more water to the

soup and make a place at the table.

There is a loss here. A real loss. A real end. The mirror is broken.  No more reflections of the particular group of genes.  I get to be sad about that for a bit.  Then I will move on.  Because there is no other option. Not for us. Continuity is not a possibility. 

I guess I better get dressed!

We All Have Our 9-11's

I am old enough tohave several "where were you when?" events in my life.  Some personal, some national. All life changing. 

John Kennedy's assassination
First Moon Landing
9-11

Cancer Diagnosis Day
Death of Father Day
Cancer Relapse Day

Transplant Day

Most are not days, most are moments but they forever change the landscape of our lives. 

Some times we don't realize the significance of a day or a time until long after it happens.  We can look back with great clarity and find the moment in time. The moment we should have known, the moment we could have known the seed was planted.  

We have many significant moments, hard impact moments, Lasts we did not recognize at the time.  We think there are going to be lots more chances and lots more days. 

I know I look at things differently.  I am much more concerned with this very moment.  I have seen too much to not be.  

I know there are limited tomorrows and no certainty. The moment of noticing the single humming bird as it locates a still juicy trumpet flower while the sun reflects off the feeder. 

We must never forget but we also have to keep going.  No matter how much chaos there is in our lives, the world keeps going forward.  See, I started this post on September 11 and now it is September 12th.  

Hoping for only good memory event creators. 

Cancer Mom Counting...

We count the numbers of doses of Chemo Therapy. We count the number of times they have invaded our children's spines with Chemo. We count the number of days between doses. We ask them to recount when blood counts are high and when they are low. We count how many days before the end. We count how far from the end we are.  We count.

We count to control and put some sense to our world and to feel like we have some control.  We like "to know" what is happening, or might be happening or what might not be happening.  

Our world does not make sense to there has to be some sort of mechanism to help.  

Treatment is easy.  It is set out, it has a plan. It has steps and goals and procedures. It has something called a Road Map.  Not quite AAA but darn close.  It lets you know where you are going and how you are going to get there.  Then some are luck to have an Advanced Nurse practitioner that gives you great calendars and a key to the Road Map.  Yes, there are bumps and count failures and lots of complications but it is a plan.  It has a defined end. 

1+1=2
3x6=18

101, 121, 314, 151, 617, 181, 920, 212, ___, ___
 What's next?

Being off treatment is a different story.  I am sitting here, counting down the days before Mary-Elizabeth goes back to college and I don't know what to think or how to react.  

Now what?  Do we count the transplant for the magic 60 month count down?  Do we just hold our breath and count until the next long term side effect appears?  We know the leukemia she had is gone.  Will there be something else to show up?  When will it come? Will we recognize it in time? Will we ever feel safe again? Shall I count my questions?

Maybe I will count the days until the worry does not greet me first thing in the morning.  Lots will tell me not to worry, she looks great and it has been a long time and she will go forth and thrive.   What is missing for me is the trust.  I trusted before and that got us 57 months off treatment and a relapse.

If you are sensing of a bit resentment and anger, very good.  Yes, my child has survived her Double Cord Blood Transplant.  But there is a price for survival.  No one comes out unscathed.  

Okay, get back from the deep despair and anger Sally Ann, You have to clean out your car and pack your child for college.  You have to see there through surgery on Monday.  You can do it. You have done it so far and you can make this last lap. 

Gentle Landing

Almost didn't feel the landing.  We have arrived.  We are here.  It was a quiet re-entry, a soft gentle thump. No broken bones, no real jarring crash.  A simple.... quiet... sigh.

So now what?  Like all endings there are things still to be done.  Loose ends.  Eye stuff, teeth stuff, Port Removal. Medication ending. Some being changed and added to facilitate the end. Some sticking around until January and some never end but the list is much much shorter. 

Deep sigh. Quiet contemplation about what it means. 

 Maggie wondered if we were having a party.  An end of treatment party.  Does not seem the thing to do.  Does not seem like I am ready to celebrate.  I wonder if celebration at the end of the last  journey was a form of hubris.  Are we really really done? Is it done?  How do we know? When do we know?  Will we ever know for sure?

I know when I read about people ending treatment and rejoicing, a little part of my heart hurts for them.  A bit of fear resides somewhere, that little voice, that nagging smidge of knowing.. knowing they might not really be done.  

They might have the call from the tired child with the bruises and the headaches and it might start again.... 

I am so grateful and so relieved and so....  

So if I rejoice, is there another parent out there, sending me a heartfelt warning.  If they have a story of another journey?  



Going to do some breathing. Some quilt finishing. Some reading. Some taking in the moment, quietly. 

Reflecting

Stillness

Quiet

Peace

Listening

Pondering

Reflecting

Lots of words for something we don’t embrace as a culture. I remember our friend Yim talking about how in Thailand they begin to teach meditation to kindergarten children and the first block of time was 15 minutes.

15 minutes… I wonder if I can do that. If I can sit for 15 minutes and not think.  If I can just be quiet. 

There is so much going on in my mind. Quiet does not seem to be much of a possibility.  I am going to try.  A moment. A moment of quiet. A moment with the dogs not barking, the phone not ringing, a moment with only silence.

I think things are at a place such a thing is possible.

I will let you know how it goes….

Hoping.

They Never Ever Tell You Everything.....

You just get used to bad news. 

You are ready for bad news, you have endlessly received bad news, you make lemonade and mustard gas out of the bad news but it is always, always bad. 

It is just bad.  No other way to put it. 

Counts up- Bad.

Counts down-bad

No counts- bad

Liver function up- bad

Liver function down—could be bad

Kidney numbers up  sometimes bad

Radiation = cataracts

Radiation = infertility

Radiation = dead thyroid

Radiation= brain process slow down

Radiation = dead bone marrow- Good.

It just goes on and on,

So imagine how it felt when our new very active, very hyper, very loud endocrinologist bounced up and down when she saw the

Stim test results.

Had she failed….. Life time of prednisone…… life time.

Happy happy happy day.

I think we see the end of the Tunnel

I can see. 

I can hear it,

 I can taste it, 

I can feel it. 

The end is near. 

I am ready but I am not holding my breath.

When I was a law student, My parents lived in exotic locations… like Canada and Switzerland.  One of Dad’s benefits was that we could fly three times a year to visit our parents.  It was a pretty wonderful perk.  We would hop on planes and head out to great vacations. 

The thought of those times was pretty exciting and if I thought about what happened after the last final, I would lose focus.  So I learned to slam a door tight until I was done.   I knew what was behind the door but I did not receive the key until everything was wrapped up.

So…. The door is slammed shut…

So here we are the remaining tasks before we are given the key.

1.     Endocrinology

2.    Big appointments with SCCA

3.    Port Removal

Three things. Three tasks, Then we can look through the door.  Look at the other side. Look at the  world again.  Not confined by all the Bone Marrow Transplant rules.

She is already stepping out.  She has broken rules hard and fast rules……. She had sprouts on her sandwich and

Raw cookie dough….

More shocking and normal things live beyond the end of the Tunnel and we are ready

y.

                                                                                                                                                              

Crow Parenting and lessons Cancer Moms could learn.

1.  They loosely define family. There is always mom and dad and a few hangers-on.  They call them Nanny Crows.  It helps because there are usually two babies a year.  Often the Nanny Crows are young adults from prior years that have not quite left their Mom's basement. 

2. They don't let them out of the nest until they can fly on their own.  When they do let them out, they have two adults with them all the time. 

3. They feed them, they stroke their necks and nuzzel them sometimes and then at some point they also ignore their screeching.  When one parent does not respond, the baby goes to the next parent. When that does not work they follow their parents around and skwack some more.  This goes on all day but in the end the kids start to feed themselves.  They score snacks but they learn and watch and figure things out. 

4. They keep them close for awhile but encourage them to play with other bird friends  Often they even let them play with starlings.  When the babies come out of the nest they are adult size with perfect feathers. The parents and the nanny's are pretty bedragled by this time of year.  The parents keep the babies groomed but when they go play with their friends things get out of control.  You can always tell by a feather or two sticking up.  

5. They pay attention to their kids.  No texting, cell phone calls or television.  They work together as a family to steal food from the Stellar Jays. They spend evenings together and fly away to roost about 30 minutes before sunset.  

I often wonder if the Crows record such observations about us?  They learn from each other, they remember faces, they know when food should appear and demand it regularly if not delivered. They set up their own "homes" and jealously guard them, chasing away the most officious interloper.  Raccoons, cats, dogs, even people are chased and dive bombed.  As a greater group they will even take on a Bald Eagle.  

We have watched, we have been amazed, we have been delighted. Our own little nature show.  They are a part of our lives. A weird but present example of parallel lives. 

Many Mom's mention they feel like they stepped off the path and have a hard time rejoining their former lives.  I think we have to do it the ways the Crows do... a bit at a time.  

We

have been fed and coddled and protected and now we are venturing back into the big world.  The thing we need to remember is we are not alone.  We are being watched protected and will be helped along the way. 

We can do it. 

Gathering and Letting Go

 We are

essentially Hunter/Gathers.  We don't necessarily use those skills for the same reasons anymore.  It has been a long time since I went out and captured something for dinner.  However, I am on the hunt for cool and wonderful and life saving items and concepts and words and interesting things all the time. 

I love to watch and look and listen and discover.  It is something deeply embedded into my very being. 

One thing I gather are people.  People with interesting and varied lives. I love their stories and histories. I love digging deeply until I find the connection. The thing that makes us the same yet not the same.  For example, last night I had dinner with one friend and found out the server was the aunt of one of Mary-Elizabeth's friends.  I am sure we were at the same Graduation Party.   The threads that connect up are long and mixed up but they are real and are strong. 

We gather people all our lives.  The roll they play varies over the years but if we are lucky there is a continuity of great depth.  They know our stories and we don't have to explain too much. 

I also have hit a point in my life that I am loosing those very friends.  I learned of the deaths of two such people just yesterday.  Both were gone way before was necessary.  Both were in my life at various times and in various ways.  Those ways change but they were still there.  We still had a connection.  

This shedding of friends and family is much more painful then gathering.  I often wondered why Meb was so uncertain about making friends with her Cancer World buddies.  It is way too hard to loose people after 30 years of friendship let alone a couple of years. 

Here is to Alison Beck and Phil Caplan.  Both leaving in their 6th decade.  Way way too soon. 

The cure is such a problem...

She is baking cookies for Camp Sparkle. A summer camp for kids whose families have been effected by cancer.  The kids are going to the zoo today and it is the last day of camp for them.  It has been a quiet week at the Y in the central district, swimming every day, lots of art, lots of time in a gym.  It has been good. 

Today MEB is taking her last dose of Prenisone. Collective breath holding is happening.  She is for all intents and purposes done.  She is finished with this cancer stuff. She is "cured".  

Cured... a weird word. OED explination.

Middle English (as a noun): from Old French curer (verb), cure (noun), both from Latin curare 'take care of', from cura 'care'. The original noun senses were 'care, concern, responsibility', in particular spiritual care (hence sense 3 of the noun). In late Middle English the senses 'medical care' and 'successful medical treatment' arose, and hence 'remedy'.

So, she is cured.  She is doing so so well.  I cann't sing the praises of health enough.  Not everyone has such success.  So many have had little or no luck in the process. So many deaths, so many disappointments.  

Remember our friend Lulu? She fought to get out of the ICU.  That "cure" left her unable to walk or even have full use of her arems.  She was so weak after so much time in bed.  So she is back on her protocol.  First big round of chemo and things are just terrible for her. 

Here is the note her mom posted.

So Lulu Ysarua Martinez will not being going home today...she has not cleared enough chemo out of her so another night at the hospital....the pain is being managed so is the nausea....ortho came up and casted her legs for new braces to wear to walk....they will not be administering vincristeen chemo anymore and will be bringing a new chemo drug on board that is just as effective but it keeps your counts down longer ....has been complaining about side ache and trouble breathing her blood count also dropped so they will be giving her a blood transfusion shortly as well.....will due chest xray to make sure lungs are good.....will update later when I know more.....


She has a fever this morning. I can sense her mom's fear and terror.  Here she goes again.  This is such a hard battle. At some point you just wish there was a way to catch a break!!!!!