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.

Walking in Magical Places -Woodlawn Park Zoo

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.   

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!!

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.

New Challenges and New Horizons.

You have to focus on the big, out there in the universe goal or it will just kill you. Out there changes a lot.  It can be next blood test, next scan, next itchy spot, next moment of nausea. But what becomes nice is knowing you become better at "Nexts"

Our focus has changed to the short long term again. A bit of forward planning is happening.  Okay so there is some blood in her urine and the docs are all a twitter, we are going to visit Grandma Mary and Aunt B.

She is registering for Gonzaga in a day or two. She has three possible schedules.   She is ready to work on her license.  I have planted two more trees in the back yard.   I start my final  quarter of school. 
We are making some progress. 

The thing I know right now, right this minute, is we have changed our focus but know it might have to be reined in again.  But that is okay.

Oh, Gonzaga is out - go Shockers....

Not knowing what to pray for......

I have a book that I love.  "Our Lady of the Lost and Found" It was written by a Canadian Author with a great sense of humor.  She is having a good week and low and behold Mary shows up with a small suitcase, Nike's and a trench coat (blue of course).

It is almost May and she needs a rest.  During the course of the discussions with her host there is a lot of talk about prayer and the requests.  It is both a thought provoking and funny book. 

Cancer Mom's like Mary a lot.  She watched her son grow and then die.  She felt the agony of not being able to do anything to stop it or to make it better. 

Michelangelo's Pieta in the Vatican is one of the most powerful pieces of marble I have ever seen.  It saddens me that it is behind glass because some man took a hammer to it.  I was lucky enough to be at the Vatican several times and just stood at the bottom, holding the foot of Jesus and looking up at Mary.  Such a calm resigned look.  Not sad or distraught but a mom's face as she holds her child for the last time. 

I know, that the face did not match the feelings behind it.  But those of us that have faced the potential loss of our child know that if everyone knew what was going on behind "the your so calm" look, the world would spin off it's axis and then upside down and we would all just float off into the Universe.

That being said, we do pray a lot.  We pray for high numbers, we pray for low numbers, we pray for 10 match bone marrow donors, we pray for remission, we pray for no relapse, we pray for engraftment, we pray for one cord to fade away, we pray for a little GVHD, we pray for the GVHD to go away... We don't really know what we are doing.

I don't think any of this illness or suffering of our children is part of a grand master plan.  God did not break Mary-E twice.  This is not some grand plan to see how many needle points I can finish.  It is not some huge test I have to pass. Now, that being said.  My ongoing conversations with God, the universe, Mary, the Ganesha, Navajo healing ceremony Buddha, the katsuras in my front yard have helped me survive this process.  I know we have no control, we have no way to know what is going to happen.  We have to survive every single day in the best way possible and only deal with what we face this moment and the next.

I find I can handle it better if I have a sounding board.  Boy there is not a church within 15 miles with a candle left unburned.  I need to know I have sent my thoughts and prayer somewhere so I can focus on this point in time.

Only prayers today are to just get through this week with the ability to pick my sister up from the airport next Tuesday. 

Grampa John and the NCAA

My dad loved college sports.  In "the day" he had been a basket ball coach.  As I write those words I don't remember if he ever played.  I don't think we ever asked him. I never asked.  He loved basketball.  He knew the game. He would have been better than or is it then Obama.  He won several of the pools at our office over the years.  


Belle and Mary-Elizabeth are currently having Grampa John dreams.  Their theory is he is visiting for the tournament.  So Grampa must have been concentrating on Oregon yesterday assuming Gonzaga would be just fine.  

I could not watch them loose to Wichita.  It was sad.  I don't agree with NPR that they were soundly trounced.  They were beaten after a long hard battle.  At least Obama was wrong about them not being able to get past Wisconsin.  Wisconsin is out too. 

Nothing much on the home front but I always keep thinking the other shoes are going to drop.  (We are beyond shoe, we are worried about the whole closet.)  I find that it is hard to concentrate on much more. I have been working in the yard and the basement.  Lots of space is appearing.  Time to go through the house.  If anyone wants anything I have, let me know...

 

Perspective.

Yesterday I was going to the car to find my needlepoint.  Ortho appointments take a very very long time. Shout out to Hem/Onc.  They know how to make things flow. 

As I was coming  and going, I passed a woman on a cell phone.  I heard bits of her conversation.  I should have stopped but I thought that would be rude.  She was talking about how her daughter's back had hurt and she had a sore throat and they had done X-rays and cultures and told her it was nothing and........ RELAPSE. 

I just kept walking and I should have stopped.  I should have waited until she was done.  I should have had a card with me.  I should have given her my number.  I should have found out her name.  I know that she was having the "I should have known conversation in her head".  "I should have known, I should have mentioned, I should have seen this coming" 

It is not the same as having the first news of cancer delivered.  The first time your shock is different.  You are able to focus on 'the cure' with more intensity.  It is so hard to handle the most basic things and work to understand everything you need to understand that you don't really have the time to comprehend what has happened.  You are caught up in the cancer river and it carries you along for the ride.  Relapse is in a different Universe all together. 

While you are savvy about cancer and what it is and does to your life.  You have beaten it.  It is over. It is still sort of a bother and worry sits on your shoulder for a very long time but you are done.  Your child beat it. You have healed, your family has healed, your life is better for having gone through the process.  

Relapse is devastating. Think of it this way.

Cancer #1 is making a volcano in 3rd grade and mixing baking soda and vinegar together. Controlled and manageable. 

Relapse is the biggest, longest explosion you can imagine. It takes away all your trust in the doctors and the system and the Universe.  It takes your very breath away.  You live on the edge of the world hoping to regain some semblance of sanity and your life again. 

The thing I know, and I wish I had told the worried mom was there is a tunnel and it does end and you can make it out alive. 

Now we are not quite there yet but I see glimpses every now and then.  Yesterday was a glimpse. A moment.

So to the Mom that has just had her world destroyed, I will find you.  I am pretty good about this sort of thing....

So..... For Once we get good news, sort of...

Arrive at 2:45
Fill out papers
Called back at 3:10
Sit in room for 35 minutes until bouncy resident comes in...
Everyone is asking about the pain.
There is no pain. 
Found Spot by accident.
Make bouncy Resident find spot on leg.
I find it first.
He looks and does not know what to do.
He decides there should be some X-Rays.

Really at 4:00 p.m. we decide to do X-Rays.
I go get coffee and think about scarfing down a donut for moral support.
Child goes to Xray.
Xray's show nothing. 
Bouncy Resident then says we should have them so that we can have a baseline of all joints for future comparison.
He gets my glare and asks about pain.

I say there is no pain.  He is confused.  He bounces out.

In come Chappie Conrad.  Tall quiet. Doesn't know how to tie his tie. He looks, I ask questions.

He looks again.  Asks where the pain is.  THERE IS NO PAIN..........

Joints look good.
Come back in 6 months.

"What happens to the spot? When do you operate and drill and scratch and dig and create general havoc with her t-cells and derail going back to college?"

Oh the spot is not that big. It is not in a joint. It is not causing any pain.  As the steroids go away, it will heal itself. Come back in 6 months and we will see what has happened.

OMG.  REally.   That is it.  No amputation. No donor leg. No..... Just go home.  Calcium, some weight bearing exercise...  

We went home. In silence.  We could both feel the ship veer slightly out of the turmoil that has been our lives for 18 months.  Afraid to wake up from the happy dream.

Love Ortho. They could work on their flow a bit... Left at 5:30 p.m.  But that is for another day. Right now I am trying not to mess with the dream.

Plan Execution: Begin

We meet today at 3:00 p.m. with Dr. Chappie the "guy" that likes to drill on children.  I figured it would take at least a week to be scheduled but the gods are with us.... I hope.

 

This is a diagram of Hell.  I can't figure out where I am right now but somewhere in the miserable middle.

I am having compost being delivered to distract me.   4 yards... I need to be really distracted...

Here is My Plan.

See Chappy (guy that likes to drill holes in children) before the month ends. Make it very clear that she needs to return to school this fall come hell or high water.

Schedule surgery by Mid-May.  Keep doing the Pred taper and resist the urge to go too quickly.
(Prednison is the cause).

Figure out what to do with all my new garden space cleared by little Asian garden guy.

Finish Blood Sucking Fiends. Do laundry. Take a shower. Order those really beautiful begonias from Brecks.  No specific order designated.

Beware the Ides of March.......

Wish I had taken time to kill that special chicken and read it's entrails!!! I was not prepared for the Ides of March and neither was Mary-E....


Good news no AVN in the joints.  It is in the shin bone.  Rare and unusual place for it to be.... Of course.
Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse.

Long-term use of these inflammation-fighting drugs, either orally or intravenously, is associated with 35% of all cases of nontraumatic AVN. Although the reason for this is not completely understood, doctors suspect these drugs may interfere with the body's ability to break down fatty substances. These substances collect in the blood vessels -- making them narrower -- and reduce the amount of blood to the bone.Great.  Damn it.... Damn it.... Damn it....  I had this.  Next step upper body MRI to see if there are any more surprises.  Meet with the only guy on the West Coast that will touch a Bone Marrow Patient.  They will remove the damaged part and then drill into the bone to make it grow more and then I am jumping off a bridge.

It is so bad I have agreed to travel to Wisconsin and help my sister and sister-in-law relocate to Albuquerque New Mexico in the summer.

Etu Brute......Did you ever notice this was the only phrase in Latin in the Bard's play?  

If you are from Canada

If you are  from Canada and your visiting Children's Hospital, guess what they feed you for lunch.

NOT HOSPITAL FOOD

Shame on you.  If you can order in for guests, then you should order in for the really important people, the patients.....

Final ring of Seven

Inner ring: Here are the violent against God and Usurers.  . All reside in a desert of flaming sand with fiery flakes raining from the sky, a fate similar to Sodom and Gomorrah. The blasphemers lie on the sand and the usurers sit.

Those of us in Cancer World don't have to worry about the flaming desert.  We already are laying (or is it lying) on the sand and we watch the flakes of fiery sky hail down on us every day.   The choices we have to make, the consequences of the choices are worse than (or is it then) any fire storm.

Today we head to the SCCA to meet with someone about perhaps being able to harvest some remaining unfried eggs ME might have.  It is complicated because they don't want her on any estrogen because of the blood clots.  Now Estrogen is being given the bad rap here but a whole bunch of her drugs cause blood clots. 

So Girl Docs want to take her off things like Prednisone and Dirt Drugs.  Cancer Docs want her off Estrogen.  Mary-E wants a baby in the worst kind of way.  She loves kids and wants to be a Mom more then (of is it than?) anything.  Makes my heart ache for her.

We shall see what they say.  I know we need to address things quickly because every day the radiation continues to do it's thing.  It takes about 5 years for all the damage to be done. 

See.... Worse then (or is it than?) fiery deserts.


Oh, we know the bankers are all not rotting in hell but just being burned to a crisp.

Level 7.... Middle Ring. Suicides and Profligates.

Middle ring: In this ring are suicides and profligates (1). The suicides – the violent against self – are transformed into gnarled thorny bushes and trees and then fed upon by Harppy (2).
 The trees are a metaphor for the state of mind in which suicide is committed.    Dante learns that these suicides, unique among the dead, will not be corporally resurrected after the final judgement since they gave away their bodies through suicide; instead they will maintain their bushy form, with their own corpses hanging from the thorny limbs.

 The other residents of this ring are the profligates, who destroyed their lives by destroying the means by which life is sustained – i.e., money and property. They are perpetually chased and mauled by ferocious dogs. The destruction wrought upon the wood by the profligates' flight and punishment as they crash through the undergrowth causes further suffering to the suicides, who cannot move out of the way.

Oh, won't this be a pleasant place to spend some time.  Thorny bleeding trees being eaten by shrieking woman/bird creatures  and ferocious dogs.  I am sure if this was well known to the general population they would avoid both.  I bet those guys on Wall Street are a bit worried. 

Those of us in Cancer world feel like we have done our time in this ring of hell.  While we did not commit suicide, we feel we have given the lives of our children over to be saved and it sure feels like suicide.  We have lost control of their lives and have little or now way to know if we have done a bad thing or a good thing.  We let them be filled with poison and radiation that does very bad things for a very long time.

We feel battered by ferocious dogs that rip and tear at our very souls.  Every day you learn something new.  Something that rips your soul out and stomps on it a bit more. 

Let's see what was today's lesson.  Jaxon, a cute little 18 month old with downs will not have to worry about cancer anymore.  They tried just one last thing and it failed.  Twice this family has been told "No More".  But this time it is over. I was lucky enough to see his mom and give her a long hard, I am so so sorry Hug...  Nothing more to do.  Wishing Jaxon only rainbows..

Sometimes it is too hard to think about.  Level Seven, Middle Ring might be an okay place.



1. Profligates.... I know I am supposed to know these things... Wasteful, extravagent, spend thrift.....

2.Harpies:a foul malign creature in Greek mythology that is part woman and part bird. 2. a : a predatory person : leech. b : a shrewish woman.

Dietrich Idaho Dreams.

I keep having them.  Sometimes I am returning to teach, sometimes I am leaving.  It is so weird.  I don't understand why.  I wonder sometimes if I ever left.

Beware, the jobs that can affect you forever.  5 years. 24 or so students in high school.  Lots of jobs.  Two million bad pizzas.  Some great life long friends.  Wonderful memories. Some nightmares. 

I don't know. Small things, small memories, great things, great memories. 

A frog in my desk.  Not even a big frog.
A spider in my window that we fed with flies.
A class of 12- 7th and 8th graders.
Being hired over the phone for 12,000. a year.
The Janitor/Mayor.
A School board election where 5 voters took down a long time board member.
Being on Crutches during the winter and coaching the girls basket ball team,
Taking kids to State Speech and Drama.
Cooking most nights and having someone on else clean up the kitchen  (Thanks James).
Students copying the back blurb as the book report.
Pretending I knew everything and learning as I went along.
Driving three girls from Idaho to California and back.  Finding on of the girls riding the escalators in Macy's and loving it all.
Finding espresso and good bread in Sun Valley.
Sitting outside one hot night watching an angry father pummel a scared coach.  The coach and family moving out during the night.
Endless hours driving on hot nights in an old convertible through the country roads and streets of Shoshone. 
Hunting asparagus on the banks of the ditches.
Walking across the street every day for lunch.
Walking the dogs on real country roads.
Deep Deep snow and house with only a small wood stove for heat.
Teaching important things like how to pin on a corsage or which fork to use.

Growing up.  Learning, Loving, Leaving.

Maybe they come when I am struggling to figure out the future.  Sometimes a few moments in the past is a good thing.  A restoring thing, a comfortable thing.

Missed Transitions

So when did it become March?  I really need to pay more attention.  This is a confusing month to say the least but I should have known.

The grass is starting to grow,
The nut hatches are back (only 2),
The birds are starting to make all that mating racket,
The daffodils are blooming everywhere,
The urge to go to the nursery is starting to rear it's ugly head,
Spring cloths are for sale at Macy's One Day Sale because they have to make room for Summer cloths,
The last of the Christmas Lights are coming down, even in my yard,
Tomorrow it will be 9:00 am instead of 8:00,
The earth is cold but the air is warming,
I have seen a garage sale sign,
Football is almost over and Baseball has started,
People are discussing Spring Break,
I want to clean out my cupboards.

Just another lesson that no matter what, the world keeps turning.  Only this year, we are lucky enough to sort of be out in the world.  Big event this week:  ARGO

Three of us watched it mid-day. 

Today, the Seattle Dog Show.  WE need to go see what our dogs are supposed to look like.  I am also shopping for a mastiff.  I would love to see Lily be the boss of a horse.....

level 7

Outer ring: This ring houses the violent against people and property. Sinners are immersed in Phlegethon, a river of boiling blood and fire, to a level commensurate with their sins: Alexander the Great is immersed up to his eyebrows.


I am not above violence. I try to avoid it and I think I should get a medal for being so good most of the time.

I did not use the Roman Candle or fire crackers in the hospital.  When they refused to bring me a big sharp knife with which to cut bread, I brought my own from home and then never once Brandished it......  They never called Code Purple on me.  I only occasionally correct those who use whom incorrectly.  We have only complained at three of the three restaurant we visited and only stomped out on one.

I think I might end up in Level Seven, ring one.  If that is where Alexander the Great is hanging out, it might be interesting.   I am sure I would be in the boiling river of blood up to my knees or here.....