Friday, June 27, 2014

Lulu

Lulu s DOING good...Ventilator DOWN To 30 percent lungs still have goo but she is doing majority of work. ..her pancreas is enlarged and her number is high so checking her for pancreantitis fever is down and so is blood pressure...if she continues to do good they are talking about taking her off ventilator next week....our prayers are heard and being answered...thank you... thank you...thank you all for your love and support.our girl is amazing and strong and healing...from the icu ‪#‎lulustrong‬


Thus reports her mom..... Long road to recover
from this blip on the way to a transplant. 

I will continue to follow this family and continue to update. Seems things are good for now.  While it seems to be "if it's not one thing it is another" but then anyone that knows anyone in Cancer World knows that is the case. 

The think about Childhood Cancer is the resilience of the children and their bodies.  They have "new" parts and over the years the doctors have learned they push much harder and have good success. 

I remember when Meb had a conversation with a Breast Cancer survivor.  The woman asked Meb about her port.  She shared with Meb that she had had 6 rounds of chemo therapy.   My lovely daughter commiserated with her and then when she spoke to me said:  "Mom, I didn't tell her how many I had had."  Even at age 13, she knew the difference. 

So here is to Lulu and her struggle.  

Thursday, June 26, 2014

I'm Stuck....

In a weird difficult and not the most healthy way.  I feel like there is collar around my neck and if I get too far away, I am yanked back.  I reach to the edges of the universe only to be snapped back in with great force.  

I push Meb out as far as she can go and she seems better at free floating than I am.  So, every single day, I try something to free myself from the deep gooey morass of Cancer World.   

List of things to do.  Then one appointment with the Kidney Doctor and I loose my ability to finish the simplest of tasks.  Going to try again.  
Stuff in places it should not be. No apparent reason, waiting for more analysis.  Possible way to help the kidneys be smarter, waiting for the end of Prednison and Siriolimus.  Best medication also lowers blood pressure so they don't really want to give it to her at this point.  Child would be a slug.

So More waiting.  

I am going to do some laundry, my mom is coming to visit and will be going to see Cher with Mary-Elizabeth. Should be a fun week-end. 

Wednesday, June 25, 2014

Bit More Progress.... Information from Natalie, who is exhausted and headed home for some much deserved and needed sleep.

Lulu is moving all limbs can answer yes.or no questions and was able to tell us she she is in pain working on sedatives and getting her comfortable no change in lungs ventilator down to 50 percent so doctor said going in right direction has blood clot in right arm started blood thinner. .low fever....dad is staying tonight to give me a break. ..get to see my other girls and my bed...Lulu strong from the icu.


No matter how bad it is at the hospital, going home to your own bed is the best medicine...




A bit of information.... heavy duty waiting....

Quick update on Lulu...I know there hasn't been much last couple days and that is because there isn't much to update. She is still on ventilator. Lungs are slowly releasing fluid. She now has a blood clot in her right arm so on blood thinners. Her blood pressure is kind of all over. She is put back under sedation. She does respond with movement when not sedated but still not answering yes and no questions. Many tests being done next couple days. Keep the prayers coming!!! I believe God has received them and has been answering in small ways. We will take it!! 


News from a friend of Lulu's... 


Quiet... sometimes it can be good?

I won't stop posting until Lulu is out of the woods.  It's that sort of "hanging in there" no matter how long or how hard the process.  

We have such a short attention span.  145 minute movies are often deemed "overly long".  Harry Potter is the longest book most kids have read, ever.  We like short, packaged things.  100 calorie brain bursts. 

Cancer is not like that.  It takes a long time to find, it takes a long time to fight, and it takes an even longer time to ever, ever forget.  Oh, that was a silly question.  No forgetting is possible.  It is just another series of events that are seared in your brain.   A Pearl Harbor, John F. Kennedy, 9-11 sort of moment. 

It has been my experience that no news is not a good thing.  It is easy to write about good news, it is hard to write about bad.  For reasons I don't understand, there is a need to package the bad news in such a way as to ease the blow.  Always be positive.  Always figure out something good to say about a situation.  Mad is acceptable, sad is not.  

I promise to post when I have news about Lulu, until then, keep the candles burning.  


Tuesday, June 24, 2014

So this is how it goes...One thing leads to another...sometimes it seems like an endless cycle.

The quiver and medicine bag are full.  Full of much magic and a variety of potions and spells and noisy machines.(Now the childhood cancer quiver is rather bleak and antiquated but the potions are better than they were.... but those are thoughts for another day. )

Best example would be Meb.  She is on 20 medications.  Of those, only 2 are therapeutic. The rest are for side effect treatment.  

Prednisone and Sirolimus cause lots and lots of side effects and so there is also
Tacrolimus Cream

Bactrim
Valacyclovier
Multiviatims without iron
Omeprozole
Vitamine D
Cetirizine
Levolthyroxine
Lisinopril
Lovaza
Magnesium
Melatonin
Warfrin
Mylanta
Tums
Zofran
Atavan
Hydroxyzine
Scop Patch
Oxycodone
Sunscreene
Cyclobenaprin

Boy the list is so much shorter now.  It used to be 4 pages. 

So Lulu is suffering strictly from side effects.  Her cancer is not doing all of this to her. Her side effects are what is causing all of this havoc.  The cure for cancer is not easy by any sense of the imagination....  Here is the newest on the poor child. 

Lulu had a blood clot in right arm. Went for ct scan to make sure no bleeding on brain..there was not..started blood thinner to get rid of clot.  Her arm is beyond huge ....her blood pressure was running high at midnight but came down at 2am ventilator is on 60...her lungs need to heal for us to come off this...I asked the doctor how long he thought she would be on ventilator and he said he didn't know. We have been in hospital over 3 weeks and day 9 on ventilator....staying strong and fighting another day from ICU...rubbing lulu's head with coconut oil..wiping her eyes. ..lotion on legs and arms..wipe her face ...caress her ear...smell her.....whisper secrets and dirty jokes in her ear...oh my sweet girl you are loved and prayed for by many but I am the lucky one who you call mom...#luvforlulu
The road is feeling like it will never end.

 
  


Monday, June 23, 2014

Ups and hopefully no downs.

Childhood cancer really is rare in the scope of the 300 million or more of us in the U.S.  Some tiny bit of the population.  Sort of like Medulary  Thyroid Cancer.  But once if shows up in your life all of a sudden everyone has it.   You make connections with those that have it, you run into people that have it. It consumes a part of your life.  

Today Meb had an appointment with our lovely Seattle Children's Bone Marrow Doctor.  She is moving to Portland Maine and this was the last time we would be seeing her. By Dr. Pollard.  It was a great appointment, the taper is working, most days. Meb is getting allergies because she is weaning off prednisone.  She has some spots but they have been around less than 24 hours and we are hoping they will subside.

Her kidneys are unhappy but then we have been down that road again.  Hopefully she will not continue to loose kidney function.  Life is good.  

So while I am sitting there I spot a parent that was on and off the floor during Meb's transplant. He is stressed. He is freaked out. Then I saw his son.  He is older than Meb and he is bald again.  Crap... he is back in treatment.  I didn't ask.  There is no way this is a good thing. 

I just can't get away from it.  It haunts me. It terrifies me. It makes me crazy.  It's a slap in the face.  The ability to believe this will ever ever be over eludes me.  By ignoring what goes on around me I can sometimes forget.  But not in a convincing way.  I am just a bundle of freaked out Mom...  

But on the other hand Lulu is responding.  Really responding.  Her story might turn around.   Sounds like her body is fighting. 


Watch out here she comes....Lullu came back from MRI they could not do it because she wouldn't stay still!!!! She opened her eyes and looked at me. She is responding to me...they had me ask her yes or no questions but no response but when I tried to take my hand away so they could get in there she clamped down on my hand and still holding on to mommy...they are ordering ultra sound on right arm where pic line is because it is huge they are afraid of blood clot....but I'm so excited about her moving I'm giddy!! And She Knows My voice...Will Update Later But Celebrate And Dance Because Lulu is Responding And SHE Hear
s us!!!! And we have 11.7 hemo 5k platelets 6100 white blood cells and a 3200 anc.....she is doing it!!!! Still on 70 percent ventilator


Hope and then....

Lulu Ysarua Martinez is feisty and fighting!! She has went day and a half no blood pressure meds fever staying at 99 she has 3600 white blood cells she has a 1248 anc which means she now has cells that can help her body fight the infection..she is moving her eyebrows shaking her head flaring her nose and coughed. ..her lungs are still bad but they do have ventilator turned down to 4 0 and she is fighting machine and breathing on her own.. her sisters and dad and close friends all got to see it but the best was her baby sister Rylee Ruth squealing SHE IS DOING IT....today we cry tears of joy and high fives around the whole icu unit...Lulu is a fighter



Lulu Ysarua Martinez had rough night oxygen kept dropping changed ventilator to normal breathe pattern which she needs to be on she has had no other movement so they moving her down for mri...doctors are concerned we are seeing reflexes and not movement.she has been off sedatives for 3 days...
Ugg.....3.steps forward and 2 back will post after mri


Who knows.  It is just what it is.  This fighting cancer thing is so hard. But then maybe life is schizophrenic for a reason. 

Every day, every moment, we have to keep focused on what is important in our lives.  Keep in the front of our minds the important persons we love and value. 

Life changes. Stuff is just stuff. Connections with people is what is important. 

Just saying. It is the little dots and squiggles that make our life whole.  

Saturday, June 21, 2014

News is trickling out, slowly..... Not much to say but fever is much better.

Lulu has had no changes and no movement...ventilator settings changing a lot blood pressure has been jumping all day but fever has been at 99....come on lulu keep fighting..



More waiting. 

This must be a very noisy place.



No News, Nothing to Report on Lulu....

Hopefully this is a quiet healing time. Hopefully it is a time for family and friends and Lulu's peeps to visit.  

Hospital Week-ends can be very quiet.  Sometimes there are so many people trying to do stuff, the quiet healing time was lost. 

A time to catch up on sleep and reflection. The best part are the nurses.  These are the "I love to work on Week-ends and have the rest of week off" Nurses.  They are full of vim and vigor.  
Because it is more quiet, they have a different energy about them.  

Hoping for only good things for Lulu and her family .






Friday, June 20, 2014

Hoping Status Quo is a good thing...

Meb is still working on getting better.  I am watching a very difficult recovery, even though it is a cold.  Like last time, it takes extra time for her to get better. 

Considering how much Lulu has been through, high fever, strep, full lungs, collapsed lungs, blown pupils, unhappy kidneys.  It is hard to know how her recover will transpire.   Very very slowly I am sure.  

Hoping today is a day of explosive ANC activity.



Lulu is still the same....pupils are responding but no body movement....her baby sister Rylee  and Payton have been by her side today...they have been talking and joking and crying out to their sister to give them a sign a flicker anything to show them she is there. This was hard to watch and hear...sisters fight...sisters bicker...sisters irritate the crap out of each other...today was humbling...sisters begging for their sister to survive to fight to live another day to go shopping.. fishing...and to braid their hair...they are here lulu waiting for you. ..give them a flicker...

Hoping
 for lots of rest and some stability for Ms. Lulu.  





Sometimes it only takes ONE

They talk about the power of one.  One person taking a stand, one person making a positive step in the right direction.  One prayer, one gleam

 of hope.  One. Two are better but then we can all wait for the next one to come along. 


So Lulu has one.  A single white blood cell.  Now it probably means more but as a Cancer Mom, one it enough.  The bone marrow is back working and making the ONE of the right kind. 

There is sign of life buried in the tubes and beeps and whistles. 

Lulu Ysarua Martinez pupils reacted to the light...eeg showing movement it's slow but better then yesterday...all sedatives are off..kidneys are struggling but putting out...xrays showed a little improvement on lungs and we have 1 white blood cell....doctor said she is still very sick but these are all good signs...she hears the prayers and is feeling everyone's love.. we read your posts and comments to her ...she is fighting...she is fighting... she is fighting....come on lulu shine on through..

ONE, sometimes it all we need. One small step. One small movement. One..... step towards a very very very long recovery.

Thursday, June 19, 2014

We all know the Waiting and Not knowing is the worst.

There is so much about the human body we don't understand but lots we do.  We are fragile. We are tough. We have lots of back up systems.  If something is not working right we keep on trying to work it out one way or another.  

Sort of like Meb's weird lung stuff.  They found something in her lungs at her two year follow-up.  25% drop in her lung capacity.  She had not noticed because she was just breathing faster.  She is stable but her body seems to have compensated.  Kind of like her big blood clot in her Jugular Vein when she was first diagnosed.  Her body had established new side vessels to get around the clot.  Who knew ?  The body is a magical thing. 

Who knows how things will turn out for Lulu, her family is there letting her know they are waiting. While unstated, I am sure they are so afraid and worried and anxious.  I do know all of this is a process.  Getting better or not, is not something dramatic or earth shattering.  It is gradual. It sometimes starts with just a twitch or a voluntary movement. 

Lulu's sister is waiting for the sign she is coming back.  Hoping something will let every one know there is healing beginning to happen.   


Lulu is still the same...kidneys now are not working and pupils still blown and unresponsive they did a eeg to check for seizures but she is not having any...they have stopped her sedatives to see if they can get any type of response. ....her sister Payton  has been holding her hand for hours in hopes to feel movement...she misses talking to her sister and this picture says it all....please lulu...give us a sign




Sometimes things just don't change but then that is good???

Lulu Ysarua Martinez witching hour as the nurses call it started at 3:30 for whatever reason that's when it begins didn't crash but scared the ba geezuz out of the staff...current situation lung xray at 5 am showed no improvement and pupils still full dilated and unresponsive will update when I can it's just hard because of all the stuff going on...we as a family are tired and mentally drained but we are hoping for a miraculous day....go lu!!!

No real change. No improvement. But then things are not worse.

"Not Worse" is sometimes the best it gets.  There is often lots of discussion about the extraordinary efforts made to save a person. Lots of docs doing making lots of heroic decisions. But how do you not do it with a young previously healthy person. 

My dad was afraid the medical system would geta hold of him and would and he would not be able to make them stop.  This is not that situation.  


Those of us in Cancer World are lucky to have the resources we have.  The care and treatment for our kids at the Cancer Centers is frankly impressive and amazing. The technology, the training, the resources we have to help our children needs to be applauded. 

So today is a waiting day.  I hope it become a healing day.

  


Wednesday, June 18, 2014

Hoping for Good Results Tomorrow.

Here is the newest  and for once Good news.



Lulu Ysarua Martinez No bleeding on the brain!!!!!! To many meds and sedatives is the problem so doctors are working on that....will do lung xray in morning .. going to bed...will update in am unless there is a change...sweet dreams my lu...we are all holding you and praying.... just keep your spirit alive and keep on fighting you are amazing....

Lulu Update

Oh, a million of hearts are breaking. Lulu's mom has been sharing what is going on.  I think that even though we don't know each other personally, we know each other as Cancer Mom's.  I have never had to watch or do what she and her family are doing but it is something that feels so close and so personal and is so real. Again these kids are so fragile. 

When your child is first diagnosed you are given some rules.  Lots of them you can break.  Not taking a child to the hospital with a fever is the one that will get you into so so much trouble. 

Hoping for a good night. Knowing the Universe is a powerful and mighty thing.  Still, from my little corner of the world, this is heart breaking... heavy sighs... deep dark place of sadness. 

Here is the latest information. 


Lulu Ysarua Martinez is on 100 percent life support now being taken for a ct scan due to both pupils fully dilated checking for bleeding on brain due to crashing this am and being without oxygen no improvement on lungs. ...oh my beautiful lulu mommy needs you to stay strong I need you to fight like hell...stay strong the doctors are doing everthing they can I need to see those brown eyes I need to hear you say mommy...hold on I'm begging you....



Life and Death keeps happening.

I was trying to figure out how to proceed yesterday.  Kid has been sick, cough, really bad cough, ache body, not out of bed.  I had a touch but with some ossillium and some long hours of sleep, I was able to knock it back.  Blessings of having a completely strong, healthy immune system. 

So she is not Emergency worthy. She should not be a Seattle Children's spreading this thing and is NOT that sick.  She has a cold.  So on day 5, I make an appointment with our family practice.  Nice new doctor.  She really is and it takes her a while to realize we aren't kidding when we start to say things. 

Yes, leukemia twice, Double cord blood transplant and menopause.  Port, blood clot history.. she feels the thyroid and says it feels fine.  We mention there is not working thyroid.  I am sure she thought we were (Secret Weird Patient).  So she suggests and X-ray, I think it is over kill but after a call to the SCCA they want one. We ask about going to Children's because it is close but no.  Then they ask if they took a nasal swab.  Of course they didn't.  They don't do that in real doctor world.  

So basically we failed to get the job done. I can see the call is coming today to go back to either Children's or SCCA and get swabbed for Strep and to snot in a cup and there will be cultures and more investigation.  Her heart rate is 122 and that tells them her lungs are working. I don't want to get too close to the hospital because we know what happens there....


So in one world I have a 21 year old with a cold.  Feels miserable, just home from college.  But because she has spent 10 years in Cancer World, I take a kid that clearly has a virus to see the Doctor.  

In Cancer World, it is serious.  It could be, pulmonary embolism, weird pneumonia and let me tell you.  They will culture and swab and image her to death.   So since we have one foot in and one foot out... today we make the calls and figure out what to do.  
She slept last night so I think she will be fine.  But then I am reminded how fragile these kids are and how a cold can take you down and not in a good way. 

So while I am whining about this stupid cold and how inconvenient all of this can be Momcology brings us Lulu.  A month ago she was going to prom, she was graduating she was spending time with her family. 

5 days ago she was sent to the ICU with high fever and poor lung stuff and she is so so sick.  This was her mom's post this morning.  


Lulu Ysarua Martinez Has Collapsed Lungs And crashed at 430..they now have her on stomach and adjusted ventilator to keep lungs open longer and less pounding on the lungs which is causing inflammation. .doctors said next hours critical. ..looks like to save her she will have to go on the ecmo machine. ..they told us she doesn't have the capabilities to heal on her own ...will update later.

I don't know these people, I will probably never ever meet them.  I will however remember that there are two paths on this road of life.  While I feel we have missed out on so much because our life has been stagnate and boring and complicated by this thing called Cancer and life has passed us by.  I will also remember Death has passed us by.....

Prayers/Chants/Rants/ for Lulu.... A lovely lovely young woman who wants to live her life like a normal person.... No on her stomach in a hospital bed surrounded by monitors and other such invasive things.  




Tuesday, June 17, 2014

World Cup is Like Childhood Cancer

Lots of player
Lots of teams
Lots of ways to win
No one really understands how it works
It doesn't happen that often but when it does it is all consuming
It comes back no matter how hard you try to avoid it.
Many people are there to watch and help.
Confusing 
Life Consuming for some and totally ignored by many
Needs a large group to cheer you on
Needs a large group to cheer you up when things are bleak
Needs constant fans to continue when it is over
There are Tee Shirts/Jerseys
It never seems to end once it has started
It can slip into the back of your mind for a while but there are always reminders
Some inevitable violence is expected



But most of all I don't understand it... at all. It comes with no warning and is a constant source of excitement and sadness. Some win, some lose there is no way to figure out who is going to do what. 

Sometimes it just "is" 





Monday, June 16, 2014

When they die, are they really gone?


Ironically I had a dream I was able to give Michael a hug last night ... I just remember that I was so happy to see that he was standing... and gave him a big hug. I wish I could have picked him from my dream and could hug him for real ... Kristy Messenger....


Kristy is a mom that lost her child a few weeks ago.  He was a lovely young man, diagnosed in August of 2013 and had a form of ALL that would not leave his body.  By all accounts he was a great kid.  Loved and adored by many and the world will miss him.  He was destine to do more than die of Childhood Cancer. 

We can rail and scream and harangue all we want but there are so many than die.  Despite the "rare and unusual" it is not rare enough.  More like "less often than it used to be."

That being said..... when are they gone.  I observed the long slow dying process and the grieving process.  It is a journey as long or longer sometimes than  any of us could realize. 

Kristy had a dream. I still have dreams about Dad.  Some are odd, some seems so so real.  I think they are.  Many cultures and faith traditions attache 40 days of transition.  Jesus hung around for 40 days.  There is a special 49th day ceremony or prayers in the Buddhist tradition.  It takes time for the spirit and those left behind to adjust.

I don't dismiss anything anyone believes as wrong.  I think Dad hung around for a long time after he died.  I have memories of my Grandmother standing at the foot of my bed.  Mary-Elizabeth had a conversation with Joseph Boyle during the Navajo Healing Ceremony. 

I watch people put away the lives of their lost ones.  I see them plan the funeral, the memorial celebrations.  The anniversaries, the birthdays, the day they died.  It is hard to watch but I think it is a part of the process. 

 I don't think those we love ever are really gone.  They also now live on in Cyberspace.  I have not been able to resist the urge to post a note on a friend's page.  

Let's face it, if a ghost can turn on or off a light, they can certainly read their Facebook Page.  I think even Mark Twain would agree and he was pretty cynical about all of us as spiritual beings. 

I don't know if it is a spirit, a flash of a smell,  a ghost, a memory, a feeling or just a wonderful thought.  I don't think we ever totally lose those that have died.  We are so connected in life, how can that connection ever be severed.  Not completely.   

We live here and now.  We know we have limited sight and hearing and perceptions.  Anything is possible.

  Kristy, keep hugging that child every chance you get. 
 I am sure our loved ones are always watching.... 



Sunday, June 15, 2014

Family and Friends can only stand it so long.

This is not a criticism but more of an observation.  I am reading through my old blog posts and realize that over the years people have left our lives.  Some have come back and forth and other's have headed in new directions.  As every Momcologist can tell you, it is hard, so hard to hang in, day after day, week after week of what seems like an endless road.  

I read post after post of people confused about where their friends have gone.  How a family member can think one visit is enough.  They have filled in that box and done what they could to be supportive.  Usually at the beginning of the much too long and seemingly endless journey.

 I do understand how it happens.  If you watch TV, it seems so hard to believe curing cancer can go on year after year after year.  That the family never quite believes it is done and they worry endlessly about silly things. No movies, no big crowd events, no unvaccinated kids allowed.  No concerts, no, no, no, no.

We say NO so many time people stop asking. They stop trying to do stuff for us because we say No as a matter of course.  We become un-reliable. We stop even planning anything.  No plans to go out to dinner. No plans to meet people at a fun event. No plans to even have coffee.  It is so hard to grab hold of the concept that we can not make plans.  

I remember every time I tried to go to a play or a musical or a birthday party, I realized it was a very big "Maybe'.  No longer was there a way to plan or project.  Hey, we even had to cancel the Make-a-Wish trip to Venice.  No easy feat.

Your family and friends sort of get it but you are no longer on the same path.  No longer are you including people in everything you do. No longer can you be relied upon to bring the potato salad.  No longer can be the person to show up with the balloons for a party. 

I have been very lucky with the support my friends and family have given us.  There have been losses but those are part of life.  Some left because they couldn't stand it. Some left because they couldn't believe we were such whiners.  I think most did not have the energy or place to worry up close.  I know we are surrounded by prayer and given lots of support in ways we will never know.  St. Joe's with organization of Mr. Boyle took care of us for a long long time.  As Meb always says: There are some great cooks at St. Joe's.  

Not everyone has been so lucky. Lots of people in Cancer World that feel abandoned and alone. I never have.  I have found that as we emerge again from the protective Cancer World Cocoon they are ready to join up again and travel together.  


We have to realize we have been gone. Gone from the real world for a very long time. Sort of hanging around in space waiting.  Sort of like the space program. Everyone is excited about the launch and the landing.  Not able to keep too excited during the 3.5 years it takes to get to Mars.  It is human nature, not awful friends or family.  

Just think, if we had a choice we would hang out at a hospital using Purell every 20 minutes watching bad TV....   Heck no.  And it's okay. 

Our friends are still there, waiting for the all clear call.  

Saturday, June 14, 2014

Fault is in our Star? or how did it come to this....

WE all choose the movies we want to watch.  There is a certain number of movies that fall into "have" to watch.  Then there are the "I can't stand to watch" group. 

I have always been an avid yet timid in my choices.  I went to see the Exorcist when it first came out but I read the book first.  I saw Jurassic Park, again only after seeing the book.  I have seen 2001 a Space Odyssey a couple of times and made Bill Nary watch it.  He complained that it last 2001 years. I have never seen Schindler's List not The Boy in the Striped Pajamas.  Several movies have gone unseen because of all the violence.  Just can't do it. 

Only way I can make it through Game of Thrones is that I have read and loved the books and know when the horse heart eating scene is coming. 

So, huge new movie based on a book about pediatric/young adult cancer kids being in love and dying.  Not sure I can do it.  Several of my friends think it could be cathartic.  The old "this is not your life but someone elss's"   I know it is make believe and the cancer is sort of weird and not very accurate.  Especially about the Sarcoma kid.  I know who dies in the end.  

I just can't quite bring myself to watch it. Now my friend Darlis has read it, Jai has seen it. Tracy told me not to read it. I have this urge to take myself off to a theater by myself with a box of Kleenex but maybe later.   

I already know kids die of cancer do I need to it.... 

Maybe on a day I feel less effected by it all.  Meb is fighting a pretty nasty cold and feeling lousy.  I will use it as an excuse to stay close and fight the urge to pay to see sadness. 

Anyway I just finished a bread making class at an Italian restaurant and I need to track down .00 flour.  Not sure what it is but it makes the best Pizza Dough. They I need a baking stone and something called a couche? and then I need a dough cutting knife and then I need....




Maybe I should just go to the movie and buy the bread.  This is Ciabatta bread.  Means slipper in Italian.  It is supposed to have holes in it and they are called eyes...  More the better.  Who knew?

Friday, June 13, 2014

Music is back.

I never realized it was gone but it has been gone for a long long time.   I am not sure why but it was. 

My dad was an adventurer.  He saw the world as a place to learn and explore.  He was curious and always had his nose in a book.  He carried that curiosity with him throughout his life.  When he went to college he squeezed everything possible out of it.  He took lots and lots of different classes, Music and Art Appreciation, Photography to name a few.  When we all went to college he encouraged we explore our passions.  

I took a few classes, lots of history, Zoology even though it was not in my major or minor. I did take Music Appreciation.  I learned a lot in both classes.  I fell in love with certain pieces of music.  One was the Mouldau a piece by Smetana.  It is the musical story.  The river starts as a small stream and moves to a big wild river, then on to a stolid reliable river and then ends up in the ocean.   

https://www.youtube.com/watch?v=kdtLuyWuPDs

It made me listen to music differently and in a way I never had before.  I learned about recurring themes and refrains in symphonies and other such pieces of music.   

I have historically loved lots of different kinds of music.  No fond of Rap or long guitar rifts. I think mostly because I don't like loud banging.  Enough of that goes on in my head most of the time.  I don't need to have it enter from another source. Some Jazz is okay, not all.  Squeaking does not make me happy.    But some music resonates with me in ways I don't understand or why some and not other.   Some melodies, some lyrics, some passages.  I remember sitting in front of the stereo player listening to musicals we owned. 

Over the past few years music was replaced by NPR.  Seldom did I play music in the car.  If I am traveling long distances I most often have Pod casts playing or a book going.  If you asked me to go to a play I am much more likely to go than to a listen to music.   

Something started to happen.  Some music started to creep back in.  It is seldom background noise, it is something that takes part of my brain to listen and it has not had any energy or extra power to do so for a long time. I think all the processing nooks and crannies have been filled with ANC, BMT, CPR, NED and all the rest of the stuff in Cancer World. 

The ability started to wake up bit by bit.  Patty took me to a U-2 concert ( not YouTube) I went to see Char, I found time for Mindy Smith, Rod Stewart finally came to town when I could see him.  James Taylor and Carol King performed together.  I made the journey to see Dixie Chicks.  Bit by bit.  Noise gave way to music. 

One of my friends mentioned he had seen the Vancouver Symphony play James Bond music and I started poking around the Seattle Symphony home page.  I had not looked at the schedule in a meaningful way for a long time. Maybe I could sit and be absorbed by music for more than 20 minutes. Maybe there was room in my being again.   We received tickets for a Pops performance at the Symphony.   I ended up going with my invisible friend Juliette Pinette. (I don't call her imaginary because you are the only one that can't see her.)  It took about 12 seconds into a Sousa March for the levee break. 

 Oh yes, music is back.  I bought two tickets before I left, went with ME last night to see Brahms' Second and have nailed down a subscription for the upcoming year.  

Something is currently compelling about complete absorption into something so complicated and amazing. Something not of this world.  It is a sort of drug.  If I could be there every day sitting in the darkened quiet listening to the amazing sound from horns answering the violins and the triangle.  The simple triangle.   That simple moment of clear sound. 

I guess the Music is back.  Anyone want to join me for a bit of Beethoven or Stravinsky. No fur necessary. 












Wednesday, June 11, 2014

To Vaccinate or Not To Vaccinate... WE have the luxury of asking that question.

Rotavirus vaccines are being rolled out across Africa at a remarkable pace thanks to the support of the GAVI Alliance. To date, 21 African countries have introduced rotavirus vaccines in their national immunization programs (NIPs), of which 17 were supported by GAVI. PATH, through the Vaccine Implementation Technical Assistance Consortium, has successfully assisted and supported GAVI and countries in the design, planning, introduction, and/or integration of rotavirus vaccines. 


It baffles my mind that there are people out there that choose deliberately not to give their child the best possible chance to survive and grow into a healthy child.   The article above was posted by Kathy Neuzil MD.  She works for PATH.  They work on educating people around the world on the purpose and need for vaccinations.

I think of all the people that died of small pox, and suffered from Polio or died of Whooping Cough.  It just makes me crazy. 

I know there are lots and lots of scared moms that are sure vaccines cause autism.  There lives were forever changed because of that diagnosis and they want an answer.  I certainly would want an answer but over and over again the link is not valid.   Unfortunately many of the times that Autism Spectrum disorders manifest themselves at some point during a child's development, chances are there is some sort of vaccination that has happened. 

Now I am not a medical professional, I don't have a degree in Public Health, I had the mumps, measles and chicken pox and lived to tell about it.  I was also vaccinated with everything that was available.   I hated each and every time ME had to have her shots.  I started making her Dad take her to those appointments.  But

I also know what it is like to watch a child suffer and struggle fighting a disease.  Why would anyone not prevent a disease if they could.  If there was a vaccine to fight childhood cancer, I would be the first in line to make sure every child received that gift.

I can't talk about this issue anymore.  Neither can I talk about guns.    

I have seen too much death of young innocent children and the destruction is does to their families.  

Just so we are clear, I gained a new appreciation for donuts and Spam after our trip across the country.  I also craved fresh veggies and green green salad.