NOT ABOUT MARY-E BUT BOY DOES CANCER SUCK FOR KIDS.

cANCER SUCKS.

It just does. It is scary and sad and way way unfair.  After all these years, decades and centuries, it still just sucks and it is predictable.

I have very basic, old knowledge gleened over the years from listening to Dad and Keith (guy from Montana that taught me put ketchup on my scrammbled eggs) study while in Med school from listening to my Dad's half of a telephone call.  Comments like "yes breast cancer metastized to the liver" sort of knowledge.

Well guess what guys, bone cancer still goes to the lungs.

We met Katie Elliot and her mom Darlis and her dad Nathan when Katie first started chemo for Osteosarcoma about a year ago.  They are from Alaska and a great bunch.  I passed the Angry Bird hat on to Katie and gave her the best chimes for her pole.  She is 16 and trying to keep up with school and always smiles and does what the doctor's say.  She had a spot on her knee of cancer and they treated her by shrinking the tumor and then removed her knee and gave her new parts.   This is how they treat this now.  In the old days of Ted Kennedy's son's cancer they just cut off his leg.  

So Katie has had to stick around because of an infection and not healing and some other nasty stuff and yesterday she had a scan. They are very fond of full body scans when you have this disease. 

Dammmmm it...... Some spots have shown up on her lungs.  Surgery, I am sure some more chemo. Dammmmmmmmm it. 

Okay.  We will wrap our minds around this and figure out how to help Mom and Dad and distract Katie and swear a bit and have them over for dinner and take them real food while they are in the hospital. 

Cancer Sucks.

We Asked for it and WE Got it..... Now What?

Endless complaints have been flowing from this house about the prednison.  Endless.  Did I mention we complained a whole bunch.

Well today we saw Dr. Paul (I eat Kangaroo) Carpenter.  Two of the steroids have exited, as per tapers connived by lots of people, and things look great. So....

She begins to taper her Prednison tomorrow.  Down 2.5 milligrams a week. 

Do you hear cheers and screams of joy.  Yes and no.  Part of what you hear is the concern this won't be a good thing.  This taper is very different then the last one so we are going to think only good thoughts and hope for no return of GVH. 

Sometimes it takes a whole lot of bravery to take the journey to the place you want to go.
As much as this feels good, it is also scary.

Time will tell. 22.5 for the rest of the week.  Yeah....

Mercury Must No Longer be in Retrograde

Mary-Elizabeth has her big follow up appointment at SCCA. 

I had my first class at the U and loved it.

I was called at 6:10 am and asked to Sub.

We are moving forward.

Yim recently went to Eugene to visit mom.  He took this picture. Lots of my cool pictures are from his cameras. (He buys and returns camera's  like crazy. He loves America because of the return policy.) 

Yes I know I have two pictures of mom but I don't know how to get rid of the extra....  Things are better but not perfect.

Back to School and Thoughts about tomorrow....at the SCCA

So, here I sit upon the verge of ending my 50th decade in a couple of years and I am returning to school. Kind of.

I am taking a Human Resource's certificate program through the University of Washington.  While it give me a UW Internet address, I am not quite going to the dark side of being a Dawg.  My father would have never approved.

I am not sure where this is leading or what will happen but it seemed manageable.  Two nights a week, not lots of money, information about an area I have worked in before and one I have lots of skills to take to a business or educational institution.  I have run my own business, worked with business people and contracts and lots of stuff or a long time.  I have lots of mediation and conflict skills so who knows where this will lead.   It just seems to be something that requires some but not a bunch of my time and should be workable given where Mary-E is in her treatment.

I was pretty proud of myself putting 16 dates on my calendar.  I love that there is no class on Halloween.  Who knew it was a school holiday.

Mary-Elizabeth has a big appointment at the SCCA.  Blood draws, multiple appointments and we are hoping for an answer from Dr. Carpenter's crystal ball.  She stopped one of her medicines today and we are hoping that the prednisone will start to taper after tomorrow.  I figure ElliMae is settling in and ready to like her new body.  It has been 9 months and a few days.

Hoping, Hoping Hoping.

Oh, Fruit cake is being "fed".  It gets to eat every week or 10 days.  Only the good stuff. 

Oh, dear, I need to get a notebook... and take glitter and beads and glue to class.  Luv it already.

Light the Night

In Seattle, Light the Night is way cool because it is around Green Lake.  It involves hundred's if not thousands of people walking with lighted balloons. The money raised is used for Lymphoma and Leukemia research.

We have been once to support Elise Reinfeldt but Mary-Elizabeth has never participated. 

There are two kinds of balloon, red and white.  White balloons are carried by survivors.  She has never felt like a survivor and it turned out she wasn't done with cancer yet. 

I am hoping next year or the year after we can do the walk and both feel like survivors.

I am trying to think of Cancer as Strep throat.   All it took was some research and a bit of moldy bread to find the cure but before they found the cure, they knew the cause.   We need to find both right now. We know leukemia can be cured by bone marrow transplants but what a cure!... we need some moldy bread.....

September 29, 2011, is our 9-11

Cancer returned, or I should say was re-confirmed.  A year ago today, we all, already knew it was back. 

Next September 29, 2013, I am going to project Cancer is way behind and has no chance to return.

I think I am going to make Fruit cake today and pray someone kills a deer or an elk so I can make Mincemeat.

Mindy Smith.... and our Journey

Sometime in late 2004 I was listening to NPR one early Sunday morning.  They had a singer/song writer on and she had done one song with Dolly Parton and had just released an album.  She sang a song "One Moment More" which was written after the death of her mom from breast cancer.
Since I am way hip and way cool I scrambled to write down her name and immediatly found her album on Amazon and ordered it.  Love her music, her voice, her range of music.  After I heard her music I tried really had to see her live.  She lives in Tennesee and does not get out much.

When she player here, it is usually at a place called the Tractor Tavern in down town Ballard.  It has been in down town for many years.  It was there before cool built up around it. Two store fronts, a stage, a few chairs a bar on the right and guy at the door asking for $17.00.  Musicians love it, small intimate, weird clientel.  It is one of "those places" where you never know who is going to do a set.

I, of course, have never been cool enought for such dives.  I still am not that cool but when I found out she was coming to town, I ordered tickets.  Come hell or high water, I was going to see her.  And I did.

Her voice was not at it's best because of a cold but she kept going...., the music was too loud because I am old but it was wonderful to finally see her, to hear her play new songs and old.  She skirts on the edges of "way cool" sort of country, sort of rock, some pop thrown in and some Jesus music, but then she is from Tennesee now... formally Long Island.

For one of her encores, she played One Moment More.  The song that started it all for me. It is a haunting melody that most think is about a guy leaving a girl behind. 

I like singer/songwriters a lot.  I didn't realize it until Beth Peterson said something about "singer/songwriters".  I like to listen to music from a person's life.  It tells a story.  I love books and art and all those things that are from a real seed of life.  

I loved my evening, even though I was up way past my bed time.  I plan to try and be up more often..... I also plan to never have to play "One Moment More" at any one's funeral.  So there.

Oh My....

The gum wall makes everyone in Cancer World squeamish.

I am so so sorry.  I have just started going back through the blog and editing it.

Boy am I a bad speller and writer sometimes.  I did some reading of the old stuff and it made me itchy and I have a great tolerance for “design decisions”.  I can forgive almost anything.  Working on forgiving myself.  (Sorry love sentence fragments.) 

I just dump my thoughts down and leave the pain and the anguish on the page. I don’t even really remember what I have said. 

I am going to go back and work on each month.  I do my best editing on real paper and will be working in Word.  I will replace the new and improved version as I finish that process.

Quiet, a good kind.

We are all up this morning.  I am off to the zoo for some walking.  I had to change insurance policies after I left the office and it closed.  I was lucky enough to be a member of the King County Bar Association.  As a member I was able to be added to their group policy.  It is always much better to be on a group policy.  

Group Health has a program with the Woodland Park Zoo.  On Tuesday and Thursday mornings a group meets at the zoo and walks for an hour through the zoo.  We enter just after it opens.

The zoo is strangely quiet at that time.  The animals are semi-active.  The keepers are busy, the paths are empty.  The zoo is basically deserted on those mornings.  The store is open but no one is present.  The small food places are closed in the morning.  The paths have a few workers and volunteers it is mostly your group. As we leave the strollers and children arrive with their Lycra wearing mothers and a father or two.  Sort of nice to be beyond that phase of my life.

Some people walk in groups, others are alone.  Someone asked me if I had found a group to join.  I am not not joining a group but I am not seeking company, just yet.  I am basically exploring.  New exhibits, old animals.  Learning my way around.  Still looking for some things that are missing.  I could not find the penguins the other day.  Found the Flamingo’s and one goose that thinks he is a Flamingo. 

I am using the time as decompression time.  I want to wander and think, stop when I want.  Just wander for a bit.  Unstructured.  No conversation.  It works for me.

Until I go to start the car and it is dead.  Really dead.  It is having a free ride to Honda of Seattle for some more work.  Hope it is not really really dead.  

Favorite quote from the Sweet Potato Queen   “There are just two kinds of cars.  Good cars run.”

The Child is Gone and Not in the Hospital

 

Allie and MEB the relapse twins, both going places.

 

She announced yesterday that she was going to go to her dad’s for awhile.  No medical “encounters” for a while so she was going to stay.  Arranged, it packed her stuff and had him come get her. So there.

I think it was the change for the first day of autumn or Patty Pages 34^th birthday or she is finally feeling better about being a bit further away.

Ana and Johnny live in that weird part that is Lynnwood but sort of Mukilteo and it is “in the circle”.  The circle drawn by people that don’t really know how far places can be if there is traffic.  But she is feeling safe and a bit more adventurous. 

Someone has offered us a beach cabin on Camano Island and I really really want to go there for a few days. 

This is the first step.

 

 

Paper and Pens

I have number of pens.  I keep them with me and use them when I can.  I have found I do so much better with a real piece of paper.  It is real, it has substance, it does innocently disappear behind Spider Solitaire.

I of course love my fountain pens.  Love the ink the blotches, the purple inky fingers.  I love the way they write, the way they make me write.  I don't mind the mess, the lack of ink at the most inopportune time.   I love the bottles I have to care around and the look on the TSA guy's face when he opens a bottle still does not understand.

Good paper, good ink, good friends.  It is a good thing.  I am going through drawers and boxes.  Who knows what will show up in your mail box.  

The worry fairy....

We are in a really good place.  Meb is back in school, sort of.  I am going to take a couple of Human Resource classes at the U so I am back in school, sort of.  She is feeling better each day, sort of.

The worry fairy is less present every day but is still hovering, sort of.  We went to see Katie and Darlis yesterday.   (They were here for dinner and Darlis commented how they would not be enjoying the 2nd floor over flow facilities during their stay in Seattle. Katie spiked a fever and bam..... 2nd floor.) We stopped by the 3rd floor to see if they were really on 2nd. 

In the hall was Abby, Chipper, always smiling, always up and moving and always always always ........ standing with three people.  She was trying to take a step.  A single step.  It was so apparent how hard this process was for her.  The pain on her mom's face, the deep confusion on her face.  The happy smile of Megan (one of our favorite nurses) trying to pretend this was expected.

Transplant, is so much more difficult then anyone can imagine.  The months of preparation, the months of recovery, what am I saying the years, of recovery.  You read about it, you see what other people go through, you go through it.  It is not an easy thing.  I hate to keep whining about it but this is not a simple thing. It is not over for us at all.  It permeates every part of our lives. 

Then, get this.  One of the kids who is at day 90ish, gets to have another transplant because instead of having one of the cord blood units go away, he still has both in his bone marrow. 

Now that is just a blooming nightmare.  Two sets of cells have taken up residence.  Who knew?  Who wanted to know?  Who could even imagine.  No one ever told me both could stick around! Now it did not happen to Mary-E but just think.  I don't think she would do it again. 

We are so lucky, sort of.   Project for today: I am going to put  the Worry Fairy in a box and make her stay there, sort of.

Hope and Hubris

Hubris: 

1.       Excessive pride or arrogance

2.       Excessive ambition that usually least to the downfall of a hero in classical tragedy

 

Hope:

1.       To have a wish to get or do something or for something to happen or be true, especially that seems possible or likely.

2.       A feeling that something desirable is likely to happen.

 

Cancer World Mom’s are so hubristic and so hopeful that we make each other gag sometimes.   They are filling our children full of poison and weird stuff and we just ask for more.  WE KNOW they will get better. WE know they will not die. We know they will not have immune systems that allow diseases not seen since the 14^th century to enter their bodies.  Our kids will not suffer all of THOSE side effects and lose their balance and lose their fine motor skills and their gray matter and their executive functioning and their fertility and their skin and their hair and their thyroid and their  sight and their kidneys and…….

We know they will get better, because we are their MOMS and we can weave through this maze of drugs and side effects and procedures and tapers and IV medications and our sheer will of being MOMS will make only good things happen.

The fact is most of the children, if not all, have a MOM with an iron will.  A mom that knows she can do better then the next mom.  A mom that is working so hard to hold on to the hope and to believe they have made it out of the tunnel and are going home.  We are going to be able to continue life, with a child intact.  A child that can look back and say:  I HAD CANCER and I beat it.  

 

When something does not go as planned, as expected or as promised, we are furious.   When the child ends up in the hospital with a fever or procedure is not scheduled correctly or the transplant has to be done again because both donors are still hanging around, we are just devastated.  We know somehow it is our fault.  We have somehow failed to do what needed to be done.  

The hardest thing of all is accepting that we really don’t make stuff happen, good or bad.  We aren’t in charge of the weird bacterium that floats around and causes an infection.  We are not in control of how an incision heals.  We don’t make the ANC go up or down.   We really are at the whim of cancer and it’s affect on our children. 

Hope and our Hubris  is how we survive

Getting Back on the Bike...

Might be a crazy thing to do. 

Might fall.

Might not.

Might hurt.

Might not.

I am wondering why I am thinking about this, of all things.  Maybe this time of Pre-Prednison taper I am able to think about other things.  Getting on the bike might be okay.  I used to ride a fair amount.  Lots of Lake Washington trail kind of stuff.  Down to Seward park.  Had the outfit, the helmet, still have the bike and the helmet.... The outfit, I don't think so...

Maybe I will try.  Or maybe I will think about trying.....

Dedications....

If I ever had to dedicate something to my child it would be a spiffy crew shell to be given to Holy Names specifically for the JV team to practice in and to row in during meets.  Hands down.  If they would not agree to that, I would give it to Green Lake Crew to beat Holy Names.

It simply sucks that I have thought about what I would do "IF".  Just as I forgetting what I would do, I was reminded last year I could be a mom dedicating something to my child.

The Seahawks dedicated the last game to Mario Guzman.  I don't ever want to have to think about it.

Ruby's parents raised money for a Bench in her favorite park.  Heidi bought a shell for Mt. Baker Crew.  I saw it go by and realized the majority of them are named after dead loved ones.

I want to dedicate things to my living daughter.  Simple as that.  I want her to dedicate something to me when I die.  None of this dedicating to people I love.

Okay, back to setting up the tent in our neighbor's yard.  Long story. Pictures to follow.

Dedicate today to someone you love that you can reach out and touch someway real.

It is something that comes up every now and then. 

Taking Care of Me

I have almost forgotten what that means.  Everyone says it sort of like:  Time heals all wounds.  It is a good thing to say, a heartfelt sentiments but sometimes it

"Easier said than done."

I am going to try to focus on me.

Step 1:  I made coffee and will drink it where I want to drink it.
Step 2:  I will get dressed and go to Woodland Park Zoo for a couple of hours and not feel guilty about not walking my dogs but instead walking around the zoo.
Step 3:  I will drink more coffee.
Step 4:  I will set up my office upstairs so I can be ready for school to start on October 1st.
Step 5:  Feed me today.  Let other's join, but feed me.  Food that is fresh and healthy and flavorful...
Step 6:  Use the good china for just the family.  
  

Okay, that gets me to noon.  See.  I know there are a million other things I could do for myself but I seem to have lost track.  Hair is good.  Toes could use some work.   Maybe something will come clear while I am walking with the animals.

I am having such a hard time going to the zoo.  It is so much easier to look around and see what needs to be done and to let it go.

I need to do somethings for me.

Going to take a shower.
Taking the newly polished round silver tray back to the basement.

Putting in a load of laundry.

So there.  The girls can walk the dogs.

So...... The Eye of GVHD

Limbo
Waiting
Sometimes waiting is a good thing. 
Sometimes it is nervewracking.  We are in the Eye of GVHD. 

Had it.
Took huge prednisone doses.
It went away.  
Drugs went away.
GVHD came back.
More Drugs  and they are about to go away again.  So we wait.


We were at clinic at the break of dawn this A.M.  Blood draw, coffee, Doctor visit. 

What's going on?
Nothing
Any new complaints?
Bumps, bruises?
Skin okay?
Can you walk on your heels?
Has anything changed?

No nothing has changed. 

WE are just waiting for the time to come when the rest of the prednisone and the hydrocortison go away and we see.  See if Ellie Mae has settled in to her new home and is happy.

Everything has been stable and the desire to taper is strong but taper fear is real and very ominous.  Sort of like those peoples waiting for the hurricane to appear.  We are in the eye.  Knowing it is just a matter of time.  

Everyone is trying to make Dr. Carpenter pay attention to this child.  They are waving the taper flag in front of him but he is not responding. We have an appointment in  a couple of weeks.  In person we are hard to ignore.

So we wait, pass the time.  Wonder, make Chiffon Cakes and invite people over for dinner.  Wonder if it is really going to be okay. Take out the good dishes, the silver and the crystal.  Wonder some more. Seems like a good thing to do while we are in the eye.

The eye of the storm only lasts so long.  I am hoping we are prepared, no matter what the second half brings.
                                  

Sweeping

We are not a sweeping culture.  It is a relative simple thing to do but we are a vacuum, leaf blowing, Shark, Swiffer, steamer kind of people now. 

We have forgotten how to sweep.  I have these very clear and distinct memories of Lupe, Mary-Elizabeth's Mexican  Grandmother sweeping.  She would start in one room and move to the next.  Or she would go in front and sweep.  Every day, without fail.

I have been sweeping a bit.  It has a calming affect on the mind.   A purpose, a good result.  It allows the mind to wander to places unknown.  To disengage from the real world and to let it go where it wants to go.  Sort of like dreaming while awake.

I need to do it more.  Time to get back into the garden and prepare for winter, as much as we can prepare for anything.  Transitioning from one set of rules to another even if it is a bit rough.  There is always a "side affect".

Sweeping = sneezing;

Sweeping = calm thought and contemplation;

Sweeping = clean back patio.

Sort of like chemotherapy.  The bad is outweighed by the good.

Points in Time.

1966:  Clock arrives

My dad was a GP in the small glen of Spirit Lake, Idaho.  He had patients that paid him in raw milk, fresh vegetables and wild meat. 

He made house calls. In one house he admired a very stately grandfather's clock.  The clock was German but had been transported from Australia by the couples Merchant Marine son.  Within the year, a clock arrived at your house.  It cost 300.00 and was made in 1883ish.

We moved from Spirit Lake to Dalton Gardens and then to a house on Prairie Avenue.  Each time we moved the clock moved and it had to have a visit from Mr. Clark.  He was the owner so a Coeur'D Alene Jewelry story that is still there.

1974 Clock Moves to Michigan

Dad was fed up with how Malpractice insurance was handled and up and quit being a doctor.  He did some looking around and we ended up in Midland, Michigan.  The Clock moved there.  We joked about having Mr. Clark flown out to Midland but then found someone to set it up.  The clock was pretty happy but the case was not.  Michigan was not a place for wood.  Humidity was not kind to the case but it survived with a few cracks. 

1978, Clock moves to Walnut Creek California

The clock was happy in the California fresh air and heat.  Mom was always way more apt to turn on the air conditioner than the heat.  Life was good.

1981,Clock moves to Sarina Ontario Canada aye?

As I think about it, I don't remember where it sat.  He has to have an interior wall, a place out of the sun.  The next move was to Storage and not Switzerland.  Maybe there were Visa issues?

1986  Back to Michigan.

And to a new clock maker.  The folks had decided it was time to do some much needed work.  Re-gilding, re-stringing.  The clock lived with the guy for more than a year.... 

Clock guys are just weird.  They fall in love with the clocks almost like mistresses. 

1995 Back West, Eugene Oregon.

Dad retired. Mom found a house.  Mom did not measure the ceiling.  Upon arrival, unpacking and setting up, it was decided punching a hole in the ceiling was not a good thing. 

Guess who had the only ceiling that would accommodate the clock...... yeah.

October 2010

Mr. Clock was very unhappy.  He would stop, he would chime at the wrong time.  He would just have hissy fits.  So we called Roger.  Roger is another Mr. Clark. He took the clock. 

September 12, 2012

The clock returned.  It was a good time to return.  It seemed he needed to rejoin the family now.  Something to mark our new transitions.  Mary-E back to the books.  My return to a bit of school, both as a student and a substitute.  An empty space filled.  A bit of family returned. Hopefully to a normal house.

Someone else's new diagnosis, our version of 9-11

Yesterday someone shared a notice of a newly diagnosed family.  First grader, at Children's, Family well Supported. What to do....  Child had a long chronic cold, will be a Seattle Children's for a while. The family has a meal service set up, they are adjusting.....

Oh, my it brings it all back all so so fast. 

For a few moments the original diagnosis passes by. Confusion, upset, concern, panic, fear, despair, and then more confusion.  How did I handle it? What was I needing in those early months? How did we survive? What would have made it better? 

 I know it took me a long time to figure out how to receive from other's without guilt. It took a long time to put into words what I needed other's to do.  Everyone wants to  help. Everyone wants to something.  No one wants to do something wrong.  Do we call? Do we visit? If we visit do we stay an hour? Do we take food?  Should we send balloon, cookies, flowers, a new puppy?

The fact is they have just had some of the worst news of their life, are in total shock and are just trying to get from one set of rounds to another.  They are learning about counts, are ecstatic that their child is not throwing up and that the hair is still their.  They are grasping on to any little bit of hope available.  They are telling their friends "it is the good kind of childhood cancer". 

I can remember when we would go for a walk on the floor or go to clinic and Mary-Elizabeth would say, "They are new".  I would agree and we would continue.  We each would enter that corner of our  brains that those first memories reside.

9-11 is seared into the memory of many.  Some of us still remember when John Kennedy died.  Some when John Lennon was shot.  Some when they got a call from a friend staying at their house, asking that a call be returned to Children's. 

We all have these dates and times.  Some universal, some personal. 
Hoping for memories of good things.