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.....  

So Why aren't you back to a real life?

I wish we had never left our normal life.
There are some that think we both are just sitting here vegetating.  As this iceberg known as cancer creeps down from the ice flow, it is hard to tell what is going on below the water.  I have tried to be like the duck, smooth sailing but paddling like crazy under the water.

I want to look back on this time as a time I did more than wait.  It is hard to be away from the normal world and not having the usual measurements of productivity.  No new clients, no new projects, no raise, no paycheck, no........ As we enter this phase of semi-quiet there are those that wonder when I am going to get back to it...  What ever that is.

People ask what do you do all day?  Why aren't you working? Why aren't you going back to being a lawyer? When are you going to be more productive?

They are fair questions but the answers are not so easy.  While things are better, they are not better enough, yet.  We can see the end of the tunnel but the end is a very long ways away.  Sometimes is looks closer, sometimes it moves.  Sort like a mirage.

On the list today, clear the table, walk the dogs, go to the hospital, try to help Mary-E sleep.  Feed  the birds, do laundry.  Buy coffee. Work in the yard. Take a chair upstairs, clear off the stair case. Clean the kitchen. Go to Good Will to drop off stuff. Edit the blog, find a publisher...... find a job. Call Children's because Meb's ankle gave out.  It just goes on and on.....

I need to realize this is my life.  Now is my life.  Maybe before the end of the month, some month yet to be decided we can look beyond today.  

Not as Steady and in Control as I would hope

Got up, took a shower, fed the dogs, went for a fasting blood draw, went to check-in for my 8:40 Tuesday Morning appointment.

I have you scheduled for next week, 8:40 Tuesday.

It was a good dry run.

Turkish News...

i'm not neutropenic anymore :) and the Mc test results: engraftment is %80-%90 okey..

 but i dont know that is that have to be %100 ? is %80 - %90 a good rate? i'm excited.. 

still have Bk virus :( and vomiting.. maybe when this problems end they let me go to home :)  it has been 2 months that i'm here..

So Guliany is the 4th person person in her country to have a double cord blood transplant.  She asks me these sort of questions and then I ask our docs and then they tell me and I tell her and then she tells her doctor. 

Sort of funny how that works.  Sort of amazing how the Internet works and what a great gift it has become. 

Good news from any part of the country is more then welcome.

Go Gonzaga and why are they not number 1?  Could someone please explain that to me.

  

Sometimes things just don't work but the taper seeming to be.

It started a week ago when we tried to go to brunch at Palisades....  Last time were were there the waiter, once apprised of MEB's dietary restrictions was great.  He brought her things hot and cold from the kitchen, never flinched when she asked.  She can't eat from a buffet. 

 Now you might ask why we would go to Palisades if we knew they had a buffet for brunch.. She has so many other restrictions now we knew there would be something she could eat.  They have a huge variety of stuff that is legal. 

Well we sat down, ordered our much needed coffee and talked to the waitress.  Oh she did not want to play. She made it very clear we were a bother.  We left.  I did stop by the front and asked to speak with the manager.  He apologized and pleaded for another chance but we headed out the door with a promise of better and free things the next time.

We then went to Palominos. It was a bit better.  I won't even mention the ice cold Calamari.

We went over to Boom Noodle for some of their yummy food.  Well of course the menu is changed.  Of course the good Vietnamese noodles and rice dishes are gone.  Of course the lemon broth chicken noodles have disappeared and been replaced by sort of bad Asian food.   We are clearly on a roll. 

We have been sticking pretty close to home but tried to have some BBQ tonight.  So off to RoRo's.  Best stuff in town.  Walked in for ribs, both had been "86"ed.  I don't remember what that means exactly but I knew what it meant   Left there and headed to Hale's Ales. Land of   Panzanella salad.  Love that salad.  The child was mourning the loss of ribs so was pretty snarky.  (This is not the first time we have gone to a BBQ place and found them ribless in Seattle.)  

So something was found among the choices and to top off the evening she ordered a brownie. They have great brownies.  Wonderful brownies..... unless you re-heat them in the pizza oven too long and the are burnt on the bottom. 

My dad was legendary for having the worst meal ever prepared in the restaurant.  He was always afraid to send things back because he knew the chef's would do to them.  Floors, stomping, spitting, was often involved.   We are hoping that with everything else going on, she is not channeling Dad. 

On a better note, the new very slow, very long very complicated taper is going just fine.  

Quietly Waiting on the Home Front.....

Bark....

So I walk the dogs a lot.  We go at least twice a day and often more.  I don't know how long they would walk if for hours if I was up to it.  Sometimes I take them on different street and sometimes we go the same route.

I love wondering around and seeing what has changed or is changing or what is never going to change.  Winter provides less to see but it can give something as simple as bark on a tree a moment of thoughtful contemplation.  I have no idea what this tree is but I am sure I need to plant one.  Lets see I have no less then 5 trees that need a home right no so just won't more make a difference. Now will it?

  You plant them and they grow and some sometimes they die and have to be replanted.  Sort of like ME's bone marrow.  I have decided I should just chill, and do some things while it is growing up.  She really is only 13 months old.  I have been expecting quite a bit.  So we will quietly wait and breath and walk the dogs and give her time to grow up.

Dr. Paul Carpenter was given a tree.  When it was "our" tree it was fine.  Now he has to live with it... He was so pleased he hugged Mary-Elizabeth.  

Level Six... Heretics...

In the sixth circle, Heretics, such as Epicureans (who say "the soul dies with the body" trapped in flaming tombs.


I am so so confused but then I must consider the times.  Being angry, sometimes rightfully so, put you in level 5 .  Heresy was a big deal in the 12th Century.  But boy do I know about Heresy....Or like I prefer to conicider it, contradiction of those who perceive themselves in power.

What a surprise, some docs think they have been imbued with great powers and should be revered.  An even bigger surprise is that I don't see it that way.  Lots of parents now days don't.  My mom still "listens to the doctor"  and to some extent so do I.  I do consider their opinion and often even do what they say but they have to provide a good explanation first.

Cancer Mom's are really the ones that know their kids.  They have been there from the beginning and they are the only real constant. Some times they are lucky enough to have someone else on the "team" that stays with then during the entire process.  We have had Karyn Brundige... Fabulous person.

Because we have this very complicated and long process, the Mom's are the only ones that know. Really know. Each child has a "note" that follows the child and explains everything but trust me it is so long and in such tiny print no one reads it any more.  More then once I have used the blog to help someone find the right page to read for a date. 

Sometimes the docs and the others need to be questioned and corrected.  Sometimes it works and sometimes it does not... I did let Paul Carpenter MD, PHD, MRI, CAT let Mary-Elizabeth have only 20mgs of Prilosec but he had a good reason.

Oh, secret Heresy is the worst....  The one at Children's is that they feed the kids three meals a day plus snacks.... HEE HEE... don't tell or you will end up on Level Six with me.