Sunday, September 30, 2012

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.....

Saturday, September 29, 2012

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.

Thursday, September 27, 2012

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.

Wednesday, September 26, 2012

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.

Tuesday, September 25, 2012

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.”

Monday, September 24, 2012

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 34th 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.


 
 

Saturday, September 22, 2012

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.  

Friday, September 21, 2012

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.


Thursday, September 20, 2012

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 14th 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

Wednesday, September 19, 2012

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.....

Tuesday, September 18, 2012

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.


Monday, September 17, 2012

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.
                                  

Saturday, September 15, 2012

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.


Thursday, September 13, 2012

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.



Wednesday, September 12, 2012

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.
 


 

Monday, September 10, 2012

Might be time to Trust in Health Again.

Cancer World Mom's are a suspicious group.  We are pretty hardened by the various things that have befallen us over the years.  The disappointment and sadness when our children are sad about not being able to swim or go to school or have ice cream because they have that disgusting water reservoir they use to hold the scoops.  Unexpected fevers, side affects caused by medicatoin given for a side affect, a child that gives herselve 7 shots a day, a ANC that is 195 and keeps you in the hospital. 

You are always on guard.  Never a moment of true restorative relaxation.

Do you wash your lettuce?
Do  you wash your hands after using the bathroom (at least one server at Portage Bay does not)?
How long has that roasted chicken been in the box?
Is that Feta? and has it been cooked to 160 degrees?
Are you feeling all right?
How is that ankle, finger, bump on your abdomen, weird tingling feeling over your left eye?

I expect that I should be able to just step back on to the fast track again. I want this to be something that is behind us. I don't want to be in this weird space.  What I am forgetting is that it took several years to begin to believe things were all right and we had a pass to rejoin our life. 
 
"Things are great"was taken away a  year ago.  A phone call, a few frantic calls to try and make the fear and doubt subside and then the  sick, horrible realization it was BACK.

Now I seem to be caught in the whirlpool of doubt and fear and anxiety.  Each time I have stepped out and tried to get back on track, something has happened.  Short trips have resulted in hospitalizations. Scheduled lunches, headaches came.  Planned adventures and a schedular calls to change the date or time or cancel or set a new appointment.     I have just now started to put somethings on the calendar.  Even when I do, I never ever trust I will be able to follow through.

As Mom's we believe that if we are not here and on top of every single moment, there will be a disaster.

I am very good at not being a dreaded helicopter mom.  Mary-Elizabeth spent months in Mexico with her Grandma starting when she was 3.  She flew home by herself when she was 5.  She took the bus from school to Downtown on the #10 when she was in 5th grade. She was not over mothered by any means. In fact many thought I was very careless in my care of her. 

So as she sits and works endlessly on her two classes, I have to let-go and learn to trust again.  I need to find a job.  I need to really start to pay attention to me. I need to trust I will have my daughter back, to stay. 

Maybe if I chant "she is going to be okay"  a thousand times a day, it will happen. 

Here is to learning to trust again that"she is going to be okay". 

"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"
"she is going to be okay"



Saturday, September 08, 2012

More About Mario.


Several months ago Linda, Mario's mom thanked his community.  She was so hopeful.  Reading her letter made me realize how much these transplants are a necessary struggle.  The media loves the happy stories.  This is a real story.  One of his friend mentioned he was in a better place.  No one should have to go to that place before they have finished school, found a career, met their true love, had kids, fought over hair styles, learned to appreciate their parents, found a house, paid a mortgage, gone on a vacation, read a fabulous book, appreciate an endless number of sunsets.... 

Letters - Guzman thank you


Mario Guzman was 18 years old when we were told he had leukemia in the blood. It was August 2007, he was starting his senior year in high school. He had to relocate to Seattle for treatment. It was two and a half months at first, then we came home for two months, then it was back to Seattle for another two and a half months to continue treatment. He did go into remission after 13 days of treatment. During this time he had multiple surgeries, bouts of nausea, loss of hair, and lots of chemo along with medications. He came home in April 2008.
August 2009, we received a call from the doctor in Seattle, the cancer was back, this time it was in his spinal fluid. He had an ommaya reservoir placed just under his skin on his head. They would shoot chemo through there. At this time we had to relocate back to Seattle, this time it was for eight months straight. My husband and I took turns staying with him for four months each. Very thankful to our employers for making this possible. During this time he had lots of stays in the hospital for high fevers, infections, again lots of chemo, and medications. Again, he went into remission and came home in April of 2010.
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In July of 2011, he had his last chemo treatment. We thought “This is it, he’s done, now we just have to get through the five-year mark” when we again received a call from the doctor, the cancer was back, again it was in the spinal fluid. So again my husband took time from his job to relocate to Seattle for treatment. I relieved my husband in January 2012. Mario had a double cord blood transplant on Jan. 23. Everything went well, after about a week and a half, he felt the effects of the transplant. All he wanted to do was sleep. They put him on hydration fluids, fats and lipids, because he got mouth sores. He retained lots of fluids. At one point he had 12 to 14 pounds of water weight. He developed GVHD, which is normal for transplants. It is where the body starts to reject the transplant. He is on five medications alone for the GVHD. At this time I have 16 medication bottles for him. On Feb. 13 he developed BK Virus, which is where he urinates blood and clots. On Feb. 14, they found he had Adeno Virus, which is in the sinuses, and put him in isolation. He couldn’t leave his hospital room. He was finally discharged after 81 days, of which 51 days were in isolation. He has doctor appointments two times a week, labs every day, and he’s been getting platelets daily, even while in the hospital. For some reason, his platelets will not stay in his body. So we’re at the hospital daily for at least five hours a day.
We strongly believe God has healed Mario. We have had a lot of support from family, friends, our church family and this great community. We have felt the generosity of the people from Quincy and surrounding areas. We are very grateful to everyone who has supported us through this time. It has been a lot easier to get through knowing we have people in our lives who care.
­— Linda Guzman (Mother of Mario Guzman)

Friday, September 07, 2012

Mario Guzman.......

What do I say? This is the message I received yesterday: Hi this is margarita, im jut calling to notifiy you that unfortuaelty mario passed today at 3am in the morning. (Margarita is the mother of Luis and her lack of English made it difficult for us to speak but she texts like crazy.)

Damn it, Damn it, Damn it.... Mario was one of Mary-E's transplant buddies.  He was a big guy, tall big, always a smile, talked with everyone, kidded with everyone.  He was a great guy.  Lived in Quincy. Has a great mom, Linda.  Margarita, Linda and I lived together for two and half months. We talked, compared notes, spent hours and hours not talking because we were with our kids. 

We learned a few weeks ago that Mario was in ICU bleeding from his lungs and on a respirator.  It has been a few weeks. Last we heard he was off the respirator but we knew he was still in ICU.  I never thought that "off the respirator"  was not a good thing.

This is Mary-Elizabeth doing Circuits and not knowing. She now knows. When I told her I was going to the funeral, she was very firm:  "I am not!!! This is why we don't talk with each other.  We know not to get attached."

They worry about each other from afar. They want to connect but know in Cancer World your friends don't just go away, they die. 

The moms are much more in touch with each other.  We all hate that the hospital won't give us information about other kids because we know the Moms don't have the energy or ability to do so.  We want to help each other and do something and we are often stymied.

We are always looking for information for lots of reasons. 
Did we do something wrong?
Should we be worried about something else? What is working for them?
What is he eating?
What is she drinking?
What is different about his identical double cord blood transplant? 
Is this our future? 
After all of this will we end up in ICU?
Did it matter that.......?

We are always comparing notes and hoping that if it is good, our child is doing better.  If it is bad, we try to figure out how are child is not in the same situation. We are like competitive moms on a play ground with our kids.

But in the end, we all fear this the most:  The death of our child.

Nothing prepares us. We just feel so helpless. We want the happy cancer story. The one the news always is so willing to tell.  We know the truth. 

We come into this knowing that only 40% of these children make it through.  Knowing and then realizing are two very different things.



Thursday, September 06, 2012

Deep into the Corners

In Cancer World the docs are always on a hunt into the recesses of the body for lingering cells. 

They look in the bone marrow, the spinal fluid, the testicles (if applicable).  They are always looking.  They say that cells hang out there and must be tracked down. 

Now Leukemia is not like solid tumors, stray cells don't float around, attach and then find a new place to land and grow.  The cells they find are just evidence that somewhere in the bone marrow, a cell is being bad. 

In Mary-Elizabeth's case the sleeper cells did not show themselves for more than 7 years.  They were shot down and suppressed and waited.  Waited and Waited and then one day they came out to play. 

 I have theories.  Stress, potato chips, bad school food. Lack of diligence, too much diligence.  Cosmic rays, too much fresh air, not enough fresh air. Too many pesticides, not enough pesticides.  It is all a mystery. 

I guess cancer is sort of like a hornet's nest.  It secretly grows in the Rhododendrons in your back yard until one sunny day when you are sitting on the back porch of Carolynn Baker's house and a raccoon climbs up and decides hornet larva would be a great afternoon snack. 

Well I have not been very diligent at my house, especially in the kitchen.  Now that "school" has started, I feel the need to return to the kitchen and really cook.  When I turned around today this is what I found. 

Oopsss.....  Kitchen Faeries are on Restriction until we find the corner.

Wednesday, September 05, 2012

I do this weird thing in my head.

I do this weird thing in my head.  I have always done it.  I replay events and dates and times.  I can place myself back to the exact moment of an event.  I step out of my body and I see myself sitting in front of the television looking a the huge full moon at the exact moment Neil Armstrong is taking his first little bounce.

We are in the Relapse Month.  The time before the calls and panic and life flights and you know all the rest. 

Because of the new face book page, I have found a family that has just started their stay in Cancer World.  I started to read their blog and felt like I was visiting an old friend.  The stages are so predictable. The frustration the anger, the feeling of loss, the appreciation for all the help. The plea for blood donation.  The lovely 9 month old that has the puffy cheeks and already knows the difference between nasty medicine and oxycodone. 

I am going to quit worrying about this today and not do a replay.  I am going to figure out how to access the GET account to pay for $5000.00 in tuition.  Oops did not see the need to do the FASFA application before June 30th.  I also have to find the original of my teaching certificate.  Has anyone seen that file????

Tuesday, September 04, 2012

4 More Months..... and Then.

WE will look back in wonder and thankfulness.  We will thank our lucky stars and then Meb wants to travel.  She wants to do more than sneak off to Renton or Maltby or..... fill in the blank.

It should be a grand adventure of some sort.  I am hoping she can convince some of her peeps to do a weird road trip of some sort.  A tent, a map, some cash a car and some travel.  Maybe to see the world's largest ball of string and the Corn Palace and a tornado and the list goes on and on.

Hopefully I will be tied down and working at some great soul building job. 

Having a child with cancer for the second time makes one wish and hope for so so much yet sometimes just the little things.  She has taken over my desk as she settles down to study and take two classes from Gonzaga. 

I am going to settle down and take care of myself for a while.  It is time.

Monday, September 03, 2012

Our Circadian Rhythms are not in Sync with the Rest of theWorld.

September 2nd 2012.  How exactly did that happen?  It just happens.  We are a bit mixed up this year. 

The sunflowers have not bloomed.  Grampa's beans did not thrive, not really.  We did manage to have other things happen. A huge undefined squash just grew.  Some potatoes were recently dug from the garden. The Jays have been added to our bird list.  Lots of Jays. 

We are just a bit behind.  I don't mind behind most of the time but it is just not like me.  Maybe I am finally catching up on the important things.

I made it to the 40th Reunion of my high school class.  I have found, with the help of another cousin, some family in Tacoma. I am utilizing social media to help move the hospital forward on the food issues.  Do visit Better Food Please Seattle Children's Hospital on Facebook.

As things settle down, and worry steps out of the way, there is time to focus on other things. The sunflowers are about 6 feet tall.  Once they hit a certain height they are start to do more than grow, they start to follow the sun all day.  Somehow at night they know to move to the east.  This is something I have observed before but in the hassle and bustle of the last few months the little things slip by without notice.

So.... yesterday St. Anthony (saint that returns lost things) returned my favorite lawn sprinkler.  I went out to change the sprinkler and noticed the hummingbird flying threw the water spray.  She then landed on the small pine tree and began to let the spray give her even a better bath. 

The moment lasted only a few seconds but It was enough to remind me to watch, listen, observe and appreciate. 


Saturday, September 01, 2012

Dreaming and Dreams and Reality

I have always been an avid dreamer.  I dream in color.  I have had way too many dreams come true.  I often wake and go back to sleep and continue my dreams.   Weird.

Last night I had "one of those dreams" .  I was talking with someone and they were telling me to stop worrying and to get back to work and I was over mothering my daughter.

From that deepest and most scary place I began to recite the odds to this person.  How many kids develop other cancers, how many kids have other health issues, how many of the Transplant kids don't live more than 5 years post transplant.  It went on and on.  I was screaming to the poor person that only only 40% make it. 

I woke up and was just in a panic.  It took a while to go back to sleep. I finally drifted back to sleep after I reasured myself how good she is doing.  Her numbers are good. She has more hair. Her skin is good. She is good. She is progressing. She is going to make it.  Really Make It.  There will be graduations and boy friends and new jobs and cars and apartments and heart breaks and sucesses and struggles and...... there will be a life. A real life, not a dream life.

Gonzaga has come up with another class for Mary-E.  She is frantically ordering her books.  She is making note books. She is reading for fun. She is looking for the correct desk that will make life perfect. Life is so so good. 

 We will return to this place and of course hair.
 
Dreams are only dreams.  They need to be there to only process our fears and help us remember we have them.  But we live in the real world.