Emily is Gone

Another one... Another Loss.  It sometimes seems like a steady stream... She was a strong determined little girl. Her family was with her all the way..... Her family is exhausted and need lots of good energy sent their way.  Sometimes when I post these things people tell me they are sorry for my loss.  It is never about my loss... it is about the world's loss.  We all are less for what has happened here.  

Childhood Cancer is a tough one.  

Just Sent MEB to California for a Couple of Weeks ...... I am So So Lucky

As usual, this summer is not working out as I had anticipated.  Thought the child would be working in Spokane but as it happens, she is on a different kind of adventure.  Her summer is falling together with bits and pieces of this and that. 

Camp Sparkle for Gilda's Club will take two weeks.  It is a camp for kids that have had cancer somewhere in their lives.  Moms, Dads, Sibs... They spend a week doing healing things.  Fun things.  They all love Meb because she knows, she knows what it is to have cancer and to have lost friends to cancer. 

She is spending two weeks with her Uncle David, maybe more depending on how his summer goes.  She is going to get to work in the office with his great assistant Donna and learn the business side of things.  She is great at doing those sort of things and had lots of organizational skills. 

She wants to spend some time with her Grandma in Eugene.  Maybe for the Country Fair.... Maybe some time on the water somewhere in the Puget Sound,  Maybe some time in Central Washington with a metal lathe and some cutting torches,  Maybe.... The Summer is full of maybes... and Maybe that is okay. 

I decided yesterday that Maybe this is just a great gift from the Gods.  Maybe I we just need to settle an unusual summer,  one not dominated by BMT fears.  Maybe this is what it is supposed to be.  I just keep receiving notices and reading posts about kids that will not be spending the Summer with their Mom's.  

Our little world of Childhood Cancer is losing some bright futures right now. Young lives are winding down and people are just down right sad.  No other word for it.  Sad.  Emily seems to be done after cramming so much into her "life list".  This was the post this morning from her family.

We are losing our Emily. She is still paralyzed. I thought today would be the day, but this little girl is a fighter and came back to tell me how much she loved me, that I am the best mom that she could have asked for, and that she is so happy that she chose me to be her mom. She is not in pain anymore, but is struggling to breathe. Please pray that God brings her home to him, so she can dance in fields of flowers. And run and play with her friends Becca, Albert, and Sarah. And be greeted by my dad and her Nonna. This is heart wrenching to watch. As selfish as I want to be, I won't. I need God to answer my prayers!

This is a very personal time for us, I ask you please to respect our privacy. I have shared her for four years, i need this time for me. I am spending every second with my baby. It hurts so much to imagine that I will never have another hug or kiss from my girl. Or hear her say "mommy" the special way that she does. This hurts so damn bad. 

Enjoy every breath your child can take with ease.  

Peeking out of the Rabbit Hole....

We are coming up on 11 years from the moment that Doctor Balter looked into Mary-Elizabeth's eyes.  Eleven....  People talk about water flowing down a stream or river and washing away the  pain and fear and despair.  After 11 years, I am sure I have seen these same water molecules more than one time. 

Running water is very healing.  It heals our souls and allows us to move forward.  It takes great efforts to stop water.  It will travel great distances and make amazing detours to get where it wants to go or must go.  Sort of like Cancer Moms.  We are pretty unstoppable. 

I spent the week-end with a bunch this week-end.  I was invited to join nine other women in an amazing house in Leavenworth.  We were taken care of in a wonderful way.  Laughter, Wine, Good Food, Quiet Time.  It's so weird to be able to walk into a room and not have to introduce yourself.  The very fact you are there is enough.  No on is "there" unless they have been through the entire process.  We are Moms of Cancer Kids.  We are the lucky ones and have kids that are still with us. 

I have been trying since the beginning of all of this to figure out how to heal. The entire process has been so difficult, time consuming, soul consuming.  In all the rush to keep Mary-Elizabeth alive and handle life, lots gets pushed aside.  I know people are just sick and tired of hearing me talk about being a Cancer Mom, other kids dying. All the struggles with Hospital food, insurance companies, medication side effects, cost of job loss, cost of unreimbursed medical stuff, everything.  It should be over, it should be done but I have not been able to put myself really back together.  

As I look back, I had started the process three and a half years ago when Relapse reared its ugly head. Things were starting to turn around.  I was flirting with maybe having a real life.  I was working on my weight.  I was paying attention to the new lines and wrinkles that had appeared and put some of the world back into perspective.   

I have been bashing around and trying to figure it all out.  A bit of escape, a bit of fun, a lot of miles on the car. Some pretty special times away.  Cruise to San Diego,  Time on a beach on Camano Island, time alone in my house, time..... but inmost cases I was still worried about someone or something.  There was always an element of care taking going on.  I was worried about the people with me or needed to do something for someone.  

The Leavenworth Retreat for Momcology was so different.  We were in a wonderful place but we had only one thing to do.  Be pampered.  Food, treats, massages, henna tattoos, quiet time.... I even tried Yoga.  It was so amazing.  Time and NO worries was the required activity.  Time with coffee on a deck and a bit of wine.  Some much needed retail therapy and time to process, listen, commiserate.  

Most of us have a strong support system.  People that made it possible for us to come out of this tornado with some semblance of a life.  They did our laundry, sent us money, fed us, brought us wine, cleaned up our back  yard and were on call for everything we were willing request.  It was remarkable.   But.....

There is something so healing to be with your  Peeps... Those that have walked that mile and been on the same journey.  We don't have to explain the anxiety, the fear, the anger, the disappointment, the loss of the certain well planned future of our children

.  We are freed up to speak and know we don't have to explain.   I came away in a completely different space.  As I packed my bags and combed my now curly hair, I felt restored and revived in a great way.  I felt encouraged and newly connected to those that spent the week-end with me.  

Let's be honest.  We need way more slumber parties.  The YaYa Sisterhood had much more content about the needs of women to help each other and we should pay more attention.

Time to spread the word about Momcology and work on making more retreats happen. 

Another Bright Light is going To Go Out....

I somehow connected to this family a couple of years ago.  Their daughter Emily was inflicted with the same Lymphoma as my friend Trisha.  Unfortunately Emily has relapsed again. This family has been on fire.  They have had every buildings in Chicago lit up with Green and Purple, Emily has been at the Police Headquarters, heck she even had a call from Taylor Swift. Emily is squeezing every single moment of life dry.  As we all cry inside for this impending loss. 

 I hate to feel like I only have sad stories to share.  I don't want to be that person but some it is such a big part of being a Cancer Mom.  Knowing we have to be there even during the losses.   

Say an extra pray for peace and painless days.  Light a candle.  Hug your kid.  Forgive your irritating neighbor. Smile at the homeless guy.  (Still feel free to kick the smokers) 

Sorry I haven't updated in a while. It's hard to come up with words when I feel so empty inside.

Emily has been having some good days. She hates radiation, but she has to go for pain management. She has about another week left. Thank God the pain finally subsided. They put her on Methadone. At first, she was miserable. Not only was she in pain, she was very mean. I don't know if it was the pain, or the getting use to the pain meds. Our Emily came back last weekend. She is only functioning on one lung, her left one. She gets up to brush her teeth and after she has to sit down and have some oxygen. What 12 year old should get tired and winded brushing her teeth? I don't know how we are suppose to do this? Looking at her beautiful eyes, her beautiful smile, her little buck teeth. I just can't imagine a world without all those things. We all hurt so bad!!!! We are watching her deteriorate. How is this fair? When I say science has failed her, it really has. ALL our kids need and deserve much better than this. This makes me absolutely sick. Ed and I have been watching a PBS special that was on a few weeks back. It's hard for us to watch so we are getting through it slowly. The last part we watched they were speaking to the first Leukemia survivor. She was in treatment 50 years ago, they listed her medication and I wanted to scream! Emily was on all the same medications. In 50 years, NOTHING has changed. How is this ok? Things in pediatric research needs to change!!!!

Hospice has been coming, the nurse is very nice. Emily likes her. The other day we had to sit and go through the stages...... Emily is entering them. She is not really eating at all. I am told that I should not force her to eat, because her body doesn't know it's hungry, it's too busy trying to keep her breathing and her heart beating. How am I suppose to not make her eat? I feel like I am trapped in a nightmare and I can't wake up.

We are still trying to enjoy everyday for what it is. We will not cry in front of Emily, unless she is crying. Thank you for all your support, prayers, and love. Ed Beazley

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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.  

Mixed Blessings

Oh dear.  Lovely lovely day in Seattle. 

Beautiful morning, nice breeze, calm seas, great people.  How could anyone be sad or upset? You Ask.  We were there to remember Katie Elliot.  Someone that left because of Childhood Cancer.  Someone that fought a good fight. Someone that spent her short 18 years squeezing as much out of life as she could.  

We met, we talked, we re-connected.  We supported the kids that have survived. We cried with the Mom's and Dad's with less successful stories. 

Katie will never be forgotten. 

Finally Getting Some Traction

And then the phone rang.  A voice asked if I was interested in doing an investigation in a Puget Sound School District.  And just like that, I was back in the land of  the grown ups. 

I sit here this evening with papers in files, notes to be reviewed, more questions to ask and soon there will be a report to write.  

Feels good.  While I have learned to adjust to almost anything, I really miss working.  It is good for the soul.  Hopefully there will be more of this work where it came from because if this becomes a real "gig" I might be able to fill in the Daruma that has been sitting in the window for a long long time.  

This feels so so good.  

So here is how this all works. 

Bodhidharma was a Buddhist monk who lived during the 5th/6th century AD. He is traditionally credited as the transmitter of Ch'an (Zen) to China. Little contemporary biographical information on Bodhidharma is extant, and subsequent accounts became layered with legend.^[1] According to one tradition, Bodhidharma gained a reputation for, among other things, his practice of wall-gazing. Legend claims that he sat facing a wall in meditation for a period of nine years without moving, which caused his legs and arms to fall off from atrophy.^[2] Another popular legend is that after falling asleep during his nine-year meditation he became angry with himself and cut off his eyelids to avoid ever falling asleep again.

So As I have been told, you make a wish or set a goal and color in an eye.  When the wish or goal is met you color in the other.   

I am so so close. 

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. 

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.... 

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....  

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. 

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

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.

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.  
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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.

Different Point of View

Sometimes a bit of change is a good thing. Just a shift in focus.  Drove to Eugene, picked up Mom and headed south.  South through the southern mountains of Oregon and then into the Valley... The Valley where thousands of years ago water filled from one mountain range to the next rich soil was created.  

Sandy, loamy, black, fertile.  Almost every inch is in cultivation.  My favorite was the full grown vineyard in the median.  I am guessing the road grew around it but there it is. 

This is a very special place.  We drove past acres and acres of trees.  All planted by those with OCD.  Perfect rows, all ways. Some have grass in the rows, other's have grass and other vegetation around the base of the trees.  I think it depends.  We had to guess because there was not way to really know.  I am all for signs on the fences so I might be able to understand which is which.  Pecans, Almonds, Walnuts? Fruit trees?  What could it be?  All a mystery to me. But then much of life is such a mystery. 

I drove and realized how much I take for granted about what shows up in the grocery store.  It is just there.  No thought given to the way and the how things are grown and what happens to get them to the store.  I do know that the feed lots and trucks of live chickens are disturbing. Crop dusters and people working in the fields.  I am also sort of horrified at the human cost required to have veggies on our tables.  Everything comes at a cost and a sacrifice for someone. 

Oh well, I picked an orange off the tree and complained of the 81 degree weather. I have helped a bit with the house.  I have sold a couch on Craigslist.  I have opened the windows of the house and listened to birds I can not identify.  I have watched the dogs all run themselves to death.  David and Mom are having a great time.  My big goal for this evening is to convince someone tall they should help me hang the Night Watch.  

Diagnosis Hope vs Treatment Reality

Someone mentioned to me that their grandchild had been diagnosed with osteo sacoma.  They were obviously upset and the depth of their confusion and pain and fear were very apparent.  It is a very scary thing. Hearing those words sticks with you for the rest of your life.  It is a "Where were you when Kennedy was Shot" question.  (Yes, I am that old.)  The child will be in treatment for 9 months.  The family has arranged to be home for a year because they are teachers and their fellow teachers have given them sick time from a pool.  There is a sister. 

The grandmother is trying to figure out what to do. How could this happen?  Does it matter if the child is 8? This is so rare how can they cure it? Do the doctors know what they are doing?

As I sit here this morning watching the birds gather sustenance from the bird feeder buffet, I just sigh.  Katie Elliot will be buried in a week.  I met her family when they were starting treatment.  Three years later, treatment is over.  She too had Osteo.  She did not make it out alive. 

When you first hear those words, the thing that gives you comfort is the "plan" or the "road map".  There it is, the PLAN.  Yes this is a lousy diagnosis but we have a PLAN.  Something to look at, something to put on a calendar. An end point is sitting there for all to see.  You can plan your live around the PLAN.

I still have some of the calendars and all the Road Maps.  I look a them when I am sorting through things.  I still look and wonder at the amount of hope and optimism contained on those pages.  The PLAN.  

What you soon realize is that the PLAN is kind of a guide.  You know where you want to go and you head West.  Sort of like being on the top of the Continental Divide and heading to the ocean.  There are million ways to get there and the ocean is a vast. But with enough effort and enough perseverance and some luck, you do arrive.

 The journey is not easy. The path is not straight. There are losses of untold magnitude.  Some are secret losses you don't discover for many many years.  It is a journey some have to make more than once.  But it is doable. 

As the family begins on their journey, my first words of advice would be to hang on to all the hope they can.  They will need it as they make their journey and have to face the reality of the bumps on they way.  Second bit, be ready for a wild ride.  Third, remember you are not alone. 

Its the "Word" Thing again.

Child having trouble breathing.

Child still in ICU.

Child with a tumor pressing on the end of the stomach.

Child with Relapsed Lymphoma.

Child with tumor growth.


What do we say?
What do we do?

I have racked my brain for days.  I am not one of those "Just buy a gift card" kind of person.  I know on some level it is the best thing.  Some money, a prayer, an encouraging note, a Coffee Card.  Heck I just found out there are McDonald Cards.  I know.  Write a note, put in a 20. Go on with my business. Easy.  I'm done. I have stepped forward and contributed.  The rest will work itself out. 

I want to give something special. I want to give something meaningful. I want to be of help and to take away some of the burden.  I want it all to go away.  But as many of us in Cancer World have learned over the weeks and months and even decades, there is really nothing that helps.   But darn it, there has to be something.  I hate limitations. 

I received news that Katie Elliot took her last labored breath this morning.  Talk about a "no words" moment.  Words won't make a difference to Katie.  Her family will no doubt find words not comforting, for a while because the pain is so excruciating.

I think the reason we are at a loss for words is because sounds don't adequately do the job.  A death is a time for silence, for deep reflection, for gazing out into space to try and connect with the molecules of the spirit.  It is a time to think about the great things the person did during her lifetime and what we learned from her.  

We all die. Some sooner than others.  The only thing that matters is what we do with the earthly time we have.  How many times do we smile, laugh, change another person's life in a good way?  What really matters isn't the balance of the bank account or how many bedrooms and bathrooms we have.  It is what we have done to effect some one's life. 

Everyday a good deed must be accomplished.  That is the important pile of stuff that needs to taken care of and stored and sorted and increased. 

Today we dedicate good deeds to Katie and her very sad mom Darlis