Wednesday, January 30, 2013

Process....vs. Event.

I have been strangly upset and stuggled the last couple of weeks.  Sort of freaked out and tense and worried. A general milaise. 
 
We went to watch Lincoln the other day.  I had not had the ability to consentrate or focus on anything.  When we came out of the movie I read the E-mail about Rebecca. 

I know this will sound awful but I felt calmer. I knew we were headed to the next level of this journey.  Her parents knew it was over, she was no longer struggling.  It is a calmer place. 

 I knew she was not going to survive the transplant.  Too many organ systems damaged and too much going on with her.  Her ball of yarn was so tightly tangled the yarn had to be cut and she had to go.  It took almost two plus weeks. 

That is such a disconcerting time.  Everyone comes to say goodby not knowing if they should or it is goodby. Everyone is there and supportive but as the parents you still want to push them away because their love and support is pre-mature.  Hard hard stuff.

Death is not easy, nor should it be. There is this long struggle between coming and going, staying and leaving and lots of waiting in-between. You want it over but then you don't want them to leave. 

Birth takes 40 weeks and a day.  Leaving is a lifetime, only you never know how long it is going to be.



She is planning to go Back to Gonzaga......

Sometimes I worry that if I make any sort of plan, it will be hijacked by a complication.  Christmas, a hockey game, a dinner party.  

It is sort of discouraging not being able to plan.  

Since she was diagnosed and taken out of school, I have been pushing for her to get back. 

She left in September of 2011.  I was hoping she could get back in remission, have a transplant an be back in school by September 2012.  They nixed that and said a year from the transplant date. I tried to move up the transplant date but that did not work.  So then I tried to get them to agree to let her a couple of weeks earlier.


Well she has been sick or stoved up because of the port for most of the month of January. That would have been a huge mess.  

So, in her own plodding way, she has always said she is going back in August.  Never wavered from that plan.  August.....  She has made the first big steps by arranging her housing.... 


I realize now, it is not enough to go back, she has to go back and stay.....  

Tuesday, January 29, 2013

You Do Too Much....

How often do you hear this or say this to someone? 

I have a lot to do and always find more to do.
I say it when I feel I have not done enough and see there is more to do. 

Trust me there is so much to get done and I often fail miserably in some things and excell in others.  Laundry no.  Keeping in touch with a scared confused young adult in Turkey at day 9 of her double cord blood transplant, I am jonny on the spot....

You can never tell what is really going on inside the mind of a cancer mom.  We are special kind of creature that is busy trying to remember what life was before cancer came and trying to get through each blip and disaster that comes our way.  We feel bad that our child has cancer and when you ask about it we try to make it okay for you.  We try to hit the good points and not dwell on the dreary reality.  Some would call it denial.  But know we know the reality and will deal with it later.

Part of how we deal is doing something we can do.  Read, needlepoint, quilt, write endless e-feedbacks and try to make things better. Write long endless blogs.  Garden.  Fail to garden.  Cook, shop, walk the dogs, go to events, organize events, spend time on Facebook, Internet research on better cancer treatments, clean house, organize pictures, scrap book, fill boxes with stuff that should be put in scrap books, finish projects, start projects, walk the dog, go out to eat, order in, shop, text, answer the phone, refuse to answer the phone, write letters, forget to mail the letters, take long showers, forget to take a shower, start a bunch of books and never finish them, fold a thousand and one cranes, forget how to fold cranes, worry that you did something to cause cancer, wonder how everyone else's children are doing, worried that they won't make it, wonder if life ever will return to normal, try and figure out if there will ever be a job that will take you given you don't know from day to day whether or not you are available.  

So  

It is a weird life.  We do what we do to keep from going crazy.  Thank-you for your love and concern and support. 

We all do too much, lets hope it is too  much of all the right things.....

Monday, January 28, 2013

Rebecca started on a New Journey this evening.

What started out as an email from someone looking for guidance and understanding about how transplant affected young adults turned into a friendship.  

Elizabeth, Rebecca's mom let the world know that Rebecca's battle with cancer is over.  Her mom's battle to help eradicate this disease is not.

Only thinking good thoughts about Rebecca and her family and they settle into this most horrific of journeys.  

One of the basic rules is that Children are not supposed to die.  It is just not supposed to happen.  

Sunday, January 27, 2013

Generalized Anxiety and her name is Juliette...

I don't generally "feel" my anxiety but I am aware that she is sitting on my shoulder.  Her name is Juliette Pinette.  She was identified as my invisible friend when I declared her presence at age two and a half.  She was around for a while and everyone thought she disappeared when I was older.

I think she has always been here.  She is the bad scary feeling when things are going wrong or we think they are going to go wrong.  Sometimes a bad feeling, sometimes a twitch or a jerk just as we drift off to sleep.  She is the one that really really likes ice cream and cake.  She will eat other things if they are not around but cake.  Good Chocolate Cake.  Her very very favorite. 

She snaps at people, she makes it so I don't sleep or she makes me just crawl in bed and go to sleep to shut off my brain.  She has moments when she makes it so I can't breath or I must shop for things I don't need.  She can be fun which explains why there are 8 quail eggs in my fridge ready to be made into tiny deviled eggs.  (Don't Ask) 

The last week Juliette has been particularly active and present.  Mary-Elizabeth's port placement, some after port placement stuff that was weird and concerning.  Rebecca is deteriorating, as dieing is a process and not an event.  Her mom is having such a hard time.  Other folks struggling.  Just stuff. Or maybe I am just now able to "feel" the anxiety.

What I have observed is I can measure my anxiety by how long I can watch a show with situational tension.  The "the music tells me something is going to jump up" or the ever present " main character is going to be caught and then the show will have to end" moments.  There are situations in South Park that are too stressful. 

I need to send Juliette off to play somewhere.  Mary-Elizabeth is regaining her strength after a month of sick.  I am back in school and figuring out this job thing.   Rebecca is going to finish her journey and I can be helpful to Elizabeth for as long as it takes. 

It is under control, it is going to be alright, in fact things should be more then grand.  Lots to do tomorrow...

Hockey Night in Mountlake Terrace

Hockey is not something many of us in the West understand.  Hey, I was one of them. I did not understand how it could be fun to watch guys in bad cloths chase a little black thing on the ice.  I have said it many times before, You have to be there. It is not something to read about or watch on TV. You have to be there. 

It is a true sensory experience.  The noise, the intensity, the collisions, the slamming against the wall.  The Zamboni ... but after you get adjusted and start to settle into the game, you realize it is an art.

These big guys are traveling at breath neck speed, in both directions.  Their entire focus is on the a 4 inch piece of frozen rubber.  Their ability to move it around the ice and slam it with precision is always breath taking.  They are such good skaters.

Several years ago, maybe when M-E was a Junior, we went to see the University of Washington play in a tournament in Eugene. 
It took about 10 minutes to be hooked.  I am still amazed every time I go.  

I am not a fan of fighting and it does happen and everyone gets to go the bad boy box or they are escorted off the floor.  They are guys on a mission and every time someone gets in their way or uses a stick in a manner "not prescribed as appropriate".  There is a bit of unnecessary roughness but they are traveling so fast and so focused, they have a mission. Love this kind of focus. 

Our team has really improved over the years. They work together and they shoot for the goal much more then in the past.  The fans have increased tenfold.  Had we stopped for dinner, we would not have had a place to sit.  

Mary-E loves hockey and we tired to go before Christmas.  She had warn herself out that day and just went to bed.....   She managed her energy better and we made it through two periods.  So happy we could see our team do well....

Saturday, January 26, 2013

Hoping.... Something we have to do as Cancer Moms


Definition of hope

noun

[mass noun]
  • 1a feeling of expectation and desire for a particular thing to happen: he looked through her belongings in the hope of coming across some information [count noun]: I had high hopes of making the Olympic team
  • [count noun] a person or thing that may help or save someone: their only hope is surgery
  • grounds for believing that something good may happen: he does see some hope for the future
  • 2 archaic a feeling of trust: our private friendship, upon hope and affiance whereof, I presume to be your petitioner


    We do it all the time. We do it every day. We pray, we plead, we often live and breath hope. WE have to keep hope close to our hearts because the other side is so so terrifying. 

    Often as Cancer Mom's we have to ignore the obvious because we can not fall apart all the time.  I have been having conversation with Rebecca's Mom.  Rebecca is so so sick and her mom has been told the battle is over.  Just as she is ready to realize it, some small, tiny improvement will crop up and then she is back to hoping again.  It is such a push pull situation.  

    The conversation goes like this:

    How are you?
    Oh, I am fine,

    How is Rebecca? We have been sitting here waiting for her to die.

    What are they telling you?  Well her liver has GVHD, she has cirrhosis, the Hepatic Vascular Disease is very bad but her bilirubin is dropping so I think she is going to be okay. She is on a ventilator  she has aspergillus in her lungs.  Her body is covered with petechiae ( little bruises) and she is bleeding internally.  Her kidneys are not working and.......................

    Oh, dear.  It all seems so hopeless.  It breaks by heart but in such circumstances hope is the only thing that attaches us to this mortal coil.  Hope is the only thing that keeps Mom's from falling apart at the wrong times.  Hope is all we have at times like these.

    I can't really imagine being the mom in the situation.  I have played the scenario through my head a few times.  But like many things in life, it is not something I can understand if it has not happened.  Sort of like all those people who think their life will be a baby will be the same as it was before the arrival.  Until it happens you don't understand... you only have observation and what ever you have gained through books and movies etc, not the same thing the experience.  

    Hoping (desire) for a good outcome......

      






Friday, January 25, 2013

Central Line University

Docs have secret ways to inject poison into children.  In the outside world we are all familiar with the IV.  Well IV's fail, need to be changed a lot, create problems when the veins figure out something is going on and they rebel. 

So.... there are 4 things kids in Cancer World people receive.

1. PIIC Line.  It is put in a child's arm like an IV but there is a catheter that goes into the child's heart.  The docs love to put lots of chemo into children and if the end of the line is in the heart it is dispersed very quickly throughout the body.  Mary-Elizabeth had one of these from August 2004 until December.   They didn't want to give Mary-E a port so we had to make the PIIC Line last and last and last.  It was it's  own kind of nightmare.  It had a dressing that had to be changed and her skin did not like it and on and on. It had to be flushed twice a day.




2. Port-A-Cath.  So this is what she has now.  It is commonly called a Port.  It goes under her skin and is attached to her chest wall.  The tube/line goes into the heart. Notice there is a theme here....  It is great because nothing is left hanging out.  When there is a need for access.  The fluids go in and out of this.  They have a special needle that goes in and makes all of this happen.  

Ports are wonderful because once the scar heals you can go swimming.  Showers even happen earlier.  


Hickman's.  Named after Dr. Hickman. I think he might be alive and lives in Edmonds.  He is retired.  The Hickman can come with one spout or two.  I am not sure why some people get different ones.  I knew from Cancer Part 1 that a Double Hickman meant a transplant.  We all know how much I didn't want her to have to have a transplant but that is old news. When our new nervous and flustered  doctor told us she was going to have a double Hickman installed, I knew what it meant and was not happy.  It did turn out to be a good thing.  

In Central Line world she has been very lucky.  No line infections, some stubborn times but all in all they have been just fine.  They all fail eventually.  The PIICs require twice daily attention with saline and heparin   Ports must be accessed once a month at least.  Hickmans are on a once a day schedule. 

So short hand;  PIIC lines, Ports, Hickmans.

Our friend Bob suggest that they should install a USB port and then do all the blood work via computer.  I am sure he will be the next to retire. 


  

Thursday, January 24, 2013

Happy Birthday Mary-Elizabeth PearlAnneEllieMae Sierra Lanham

You are almost a year old.  The transplant was at 3:00 pm so let's not jump the gun.  

I don't quite know what to say.  I am sure you don't either.  I wasn't too interested in transplant day.  I was much more interested in Day 18 when cells showed up.  Trust me the days between 1 and 18 were pretty horrific.  

You were one miserable child and for good reason.  
Everything was an effort.  
Everything was difficult.  
Everyone hovered, a lot.
Everyone wanted to poke and prod.
Everyone wanted to weigh in on how you were doing.

You did it.  You invited PearlAnnEllieMae in and made them feel at home.  They are still being bothersome but that is how toddlers react to the world. 

A year. 365 days.  It took only 40 weeks to bring you into this world.  I can say this process was much more difficult and trying. I am expecting much better behavior this next year. 

Love you. Cherish you. 

I am so glad you are still here, even though you are going to become a toddler and get into everything. 




   

Wednesday, January 23, 2013

She is Awake, She hurts, but only when she Move.

She is good. The Port is inserted, in the same place as the scar from Port 1.  She should have much less trouble with blood draws right now.  It might seem extreme but her veins are shot and I suggested they take her to the OR each time she needs a blood draw.  The Surgeons were concerned about putting a child size port in an adult child on steroids.  We were having none of that nonsense.  Seems to me that they should order a few adult size ports.  They also did not think it was a good use of hospital resources to take her to the OR and some nitros each time she had a blood draw. 

Port has been installed.

I am going back to bed.  I forget how much I don't sleep before surgery and other important stuff. 

I think I handle it but the late nights and weird dreams and frequent wakings tell another story. Another Good Rem period is all I need to be good. 

Tuesday, January 22, 2013

Don't Get Me Wrong, there are good Stories.

I am not a gloomy person.  I am a happy, well adjusted human being.  Generally life is good or we can make it good with a little effort.  There are some weeks that are better then others.  

People don't want to know the dark side.  I totally understand.  Hope and statistics is what gets us through the days and nights and each scan and each impending blood draw. Those of us in Cancer World have no choice.  No choice leads to acceptance, mass rationalization and coping mechanisms abound for humans.   It is what it is so DEAL.

Lots and lots of kids do their time and move forward, just like in the movies and on TV.  I remember the lovely one episode of Grays Anatomy when they did a bone marrow transplant in one episode.  Child was in the hospital for about 56 minutes.  




This process, like so many others, is long and complicated.  It more like remodeling your bathroom.  You start with a water spot.....  4 months, thousands of dollars later it is fixed.  But sometimes the fix reveals the uranium mine under the foundation and the whole thing has to go. 

Mary-Elizabeth is in that awful part of construction where they are doing the trim, the fixtures have not arrived and there is that pesky problem with the toilet still rocking.   All will be done in good time but somethings can't be rushed...

Monday, January 21, 2013

My Rebbecca is on the East Coast

So Pam S. a parent from Seattle Children's thought I was talking about another Rebbecca being treated at Seattle Children's.  Seattle's Rebbecca is 18, had a transplant and then disappeared from the floor to the ICU. Kids disappear.   

It is another example of a subtle problem we have while in Cancer World.  The hospital won't admit there are ANY children at the hospital because that would violate HIPPA.  We live on the floor and many at Ronald McDonald House, chat in the clinic, Facebook each other and have a myriad of ways we ferret out information about what is going on with "our kids".  


I can remember coming out of Mary-E's room one night and there were a million people in the room next door. Doctors and Nurses and portable machines.  There was huge amounts of frantic activity.  The next time I was out of the room no one was around.  The room was empty and it looked like a war zone.  No nurses were around and it was just creepy. 

Kids just disappear and no one wants to talk about it. How sad is that.  Some one's child is critically ill or has died and we pretend nothing has happened.  Trying to "protect" cancer parents from what they know is a possibility from the moment we ask about outcomes may need to be reconsidered. 

The silence scares us more and it removes a very important support system from the family. 

Sunday, January 20, 2013

Rebecca is going to have to do as Dr. Tracy used to say "A do over"

There is just too much going on right now.  She retained almost 26 lbs of fluid over 24 hours.  Kidneys are tired, blood pressure is up and down and not in a good way,  spleen is not doing what ever it does, liver is not functioning and on and on and on.

I spoke with Elizabeth last night and she was exhausted and emotional and scared. I so wished I could have taken her a couple of tea cups and some tea. 

These kids are strong and determined. 

It makes me so so sad.  It is so weird how connections are made.  Even though we don't spend a lot of time in traditional neighborhoods, we still look out for each other's kids.  Our neighborhoods are a bit different then before.  Little bits of data, 1s and 0s across wire and cable and real things happen between people. Someone asked why I reached out to other moms in other states and countries.  How can we not do that?  Cancer parents have a special insight into what is really happening and it needs to be recognized and we need to fix it.  Just fix it.....   

Prayers go out for this family as cancer wins again. 

Friday, January 18, 2013

Five Years is not Enough

We all make deals with God all the time. If you help me pass this test, I will say 10 Hail Mary's a week.  If I pass this test, I will never swear again.  I promise to do anything to make this nightmare go away, I will even fold the laundry.  (you have not idea how bad it has gotten)

My daughter should not have cancer, I want her to graduate from St. Joe's and go to Holy Names and graduate from there... that is all I want.  I want those 5 years they talk about.

They always talk about 5 year survival rates.  When the words are tumbling towards you and your brain is in a rapid river and all you want to do is hear good news, 5 years sounds like a gift.   It is something to hang on to as your whole life is being dismantled and you are rushing down the river.  5 years. 

Well let me tell you from deeply felt experience, I want 50 years.  5 is not cutting it.  5 years off treatment flew off the shelf so fast I didn't even notice it was gone.  Whossh, and it was gone.  From what we have been told, it takes 5 years to recover from the treatment.  That should not be counted as the 5 years.  

So the docs need to buck up and they need to look out into the future.  They need to be more optomistic.  They need to re-write the script. 

50 more years...... 50 more years.... or 60.  I am not too picky or demanding. 

Thursday, January 17, 2013

Rebecca

Day 48ish.
Sister gave her bone marrow.  Mostly matched but not all the way. 7 months off treatment before relapse.  Trying to get her life back. Trying to be a normal kid.

She has been in ICU for more then a month.  Kidneys, Dialysis,seizures, weird blood pressures, spleen unhappy, sepsis.  Lots of scary things.

I spent some time with her mom when I was in New York. We chat on occasion and I try to answer the questions.  There are a million questions.  When did this happen to Mary-Elizabeth? How did you get over this problem? When did this start to happen for her?  How did you handle this....?  Will she ever get her life back?  Boy if that is not THE question.

It is so hard.  It hard on the kids, hard on the families.  It is just hard.  We all are looking for a way to handle the hardness.  One we we do it is to help other's but it adds a layer of difficulty with every connection.  You don't always want to share what you know and how you know it.  

We were down having Hector the Magnificent draw MEB's blood.  There was a mom and a little girl, 7ish, sitting with her American Girl Doll named Lily. Lily was all garbed up and pasted up ready for her EKG and a blood draw.  The little girl was explaining to Mary-Elizabeth how she was brave and didn't have things done to her that hurt very much any more.  The mom was so happy that they were celebrating 4 years off treatment.  I looked at Mary-E and she looked at me and then returned to testing.

Later I complimented her on how she had not said anything.  We both knew there was no reason in the world to share our story. 

When you are sharing, you always hold back the scary observation.  The bit of wisdom you have garnered along the way.  The words you never want to hear spoken outloud.

Sometimes it is important to just listen, and pray. Today after I heard Rebbecca was having some Liver issues, I talked to the third grade I was teaching.  I explained a bit about Leukemia and touched on Bone Marrow transplants.  I told them about Rebbecca and told them I had promised her mom they would say an extra prayer for her.  I had told Rebecca's mom 3rd graders prayers have great power. 

I think they do.  I think the little ones have such strength and purity of belief.  

We said a prayer for Rebbecca at the end class and Grace said she would mention her tomorrow.  Grace is in charge of prayer this week and she wrote it down.   

Special Powers........

Frost filled Mornings

Coldness is creeping into all the crevises of the house.  Frost is deep, the kind of frost that could be mistaken as a light dusting of snow.  I think my yard waste container is frozen shut.  (I will be testing it soon when I add more after I bundle up and venture outside.)

Outside looks like a lot of parent's in Cancer World feel.  Dark, cold, isolated from those that are in warm cozy houses.  It is hard to describe.  Despite what is happening, we have oodles of optomism.  Against the most horrid odds and twists and turns of the process.

The good thing about it, warms up.  The birds brave the cold and then we all feel better.  We all have bad days and very frosty days.  It does not take much to help spread the warmth.....



Tuesday, January 15, 2013

A call for Kindergarten came and I went....

What an amazing thing to do. They are so fun.  Squeggly, all the time.  Noise just emanates from them.  This bunch had a problem with lines.  Really, I have standards and a line is not a hard thing to make.  They do have 26 in this class so it is pretty crazy. 

Lots of stories, lots of work sheets.   They have white board projectors and I need a manicure.  The day passed with relative ease.  No one scarred, no one in too many tears about hurt feelings.  The door holder was not happy that everyone did not say thank-you.  During free choice time, Em decided she wanted to explain to Anna about her horrible day.  Rudy's nose bled. Blevon's finger bled. Samantha fell and her hands were scratched. 

I just covered them in lots and lots of purelle and stripped down when I came home. 

It is interesting to be in different schools with different kids.  Now this is not a rich school by any means.  Solid school in every way.  All the kids are in uniforms.  There is an energy and a neediness that comes from some class rooms.  It is very apparent that some kids have their very basic needs met but other are seeking some of that from school. 

There is a lot to be said about have a good breakfast, a hug from a mom in the morning and a good friend in school.

Oh, Hot Lunch at St. John's has Chef Walter beat...

Monday, January 14, 2013

I Sat By a Guy named Brad

On the way back from New York.  He was coming here for Christmas.  He was from Southern California.

He had lived in Seattle for a number of years.  He owns a company, lives in Berlin and while at the University of Washington came down with Lymphoma.  While he could have been treated at Children's  he was at the  University and when the big merger happened under the SCCA.  

When he asked why Mary-E did not have a Port, I knew he was one of us or had someone in his life that was from Cancer World.  We had a very long talk.  I was most interested in how his life was now.  What he had experiences over the past few years.  You know I asked him a million questions. 

Brad told me it took him almost 5 years to really feel good again. He counted each and every day a good one when he woke up and had energy.  He has crafted a life for himself that works.  He travels  a lot.  He spent time with friends and family and lived in a place he fell in love with, Berlin.  

I don't know if I let him know how much our visit lifted my spirits.  We spend so much time in Cancer World managing a the crisis d'jour that it is hard to see 5 years down the road, let alone 10.  

I know Mary-E was almost 5 years out when she relapsed so we should have been pretty darn happy.  But you, know, she never felt like survivor.  She always hated that word and relapse was the word that cast the biggest shadow.


Thanks Mr. Brad. 

Sunday, January 13, 2013

Tucker may have to Die today..... and so should some administrators that think they can cut corners on the SCCA floor at Children's Hospital.

I love Tucker.  He is a great dog.  Noble and wise.  He is sort of like some of the nurses we have had over the years, (not many but some) and they all lack common sense.  

Rules are something we must have because not all people have common sense but then even when there are rules, it is a good idea to apply them with some common sense. 

So this morning I let the dogs out (Lily is back).  They ran, Tucker bit and shook the hose (he is a dog, how do I know why) and then they began to bark  in the driveway.  Our driveway magnify sounds so I worked to get  him in the house.  

Since we were under attach, there was a need to work extra hard.  I tossed a couple of treats down the stairs and he came in, finally. Mission accomplished.  I could have some coffee, and spend some time on the computer.   But........

Best laid plans are not always the best.  Two of the treats ended up on the stairs going down to the basement.  Tucker could not figure out how to get them. He just whined. He is an awkward sort of dog so if he just bent his head and tried he would fall down the stairs.  He just whined. He sat and looked at them and then guess what?   He just whined some more.  I tried to explain to him that if he went into the basement he would be able to eat them as he walked up the stairs.  He never stops on the steps, he goes all the way down.  Something about physics and gravity and other nerdy stuff.  Again, he just whined.

So after he resisted my efforts to send him down stairs I unleased the hounds again and more barking was happening.  I took pitty on my neighbors, picked up the treats, brought the dogs in and realized sometimes, you just have to whine.

Sometimes there is nothing that can fix the situation.  Things require whining to accomplish the better out come.  Seattle Children's is going through a major change in how they provide care.  At least on the SCCA floor there has been one to two care.  On transplant day we had two nurses all day.   They have gone to a CNA system where the lesser paid and trained people do the really basic, cann't screw it up no matter how hard you try sorts of things.  

Oh, yeah, lets go from the most highly trained nurses to people that are just starting out and don't really understand.  Here is the link to my friend in the trenches Gail and her experience.  She is not just whining.  She is trying to save her child from Leukemia. 

Mr. Tucker will not give up.  He will not stop whining until he gets what he needs and what he wants.

Handling things like bad food issues, problems with Security and their stupid badges, filthy and incompetent emergency department is hard.  Having a CNA try to wake your child to weigh a diaper is just too much. 

Rules are good.  Common Sense is better.

http://www.robinaviva.com/2013/01/the-new-we-dont-care-model.html?spref=fb
 




Saturday, January 12, 2013

Voices from other Places...



So my chatterings on the Internet bring strange results. People Google things and they find my stuff and they contact me.  This is both good and bad.  

Always good to know others are out there and there are about 6000 new sets of parents a year. In the US.  I have no idea how many are out there in the rest of the world  It is sad to know what happens in many situations.  They don't always have happy endings.  Sometimes you don't know the ending. Sometimes people just reach out and then disappear.

The newest to reach out is a young woman from Turkey.  


> Hi there,
> my name is gulenay  i'm from Turkish Republic, and i'm a 24 years old girl who has a lukemia (aml m5)
> i found you from your blog.. and i'm gonna have double umbilical cord blood transplantation.. and i'm scaring.. what shoul i do? what u recommend us? help us pls

I wrote back and was very worried that I had not heard.  This morning, I received this: 

 hi there!
today is the first day of chemo. i mean -7. 19th of this minth is the certain transplant date.. i was a little bit busy so i forgat to write you.. they send me other parts of hospital (nose ear trouht, eye, teeth, lung etc..) for control to before transplant..
tey gave me a paper today and and somr boring things writing on it.
example: during the 1 year after transplant dont go crowded places such as shopping centers, never eat outside don't eat the goods whic are close to soil such as mushrooms and greenness etc.. etc..
is that rules really very important?
there is no problem about nutrition now. i drink nearly 3 litters of water every day and eat everything (i mean allowed by the doc.)
how is your doughter? and. and i really wonder that how old is she?

I am amazed to hear from someone but what a gift.  Well I have to feed the hummingbirds and pick up my house a bit.  Lily is coming home and we are staying close to home.  The outside world is dangerous on the week-ends for us.  





   

Friday, January 11, 2013

Year of the Water Snake and Drinking Death Wish Coffee

WE have been on a very long journey.  One that has ups and downs.  Set backs and gains.  Lots of stuff. I figure we can not be surprised and it is all under control.  I have more hope than before.  Why you ask?

I have had a whole pot of DeathWish Coffee.  It is supposed to be the most highly caffeinated coffee in the world.   http://www.deathwishcoffee.com/

I am not sure whether or not it is but Just saying sometimes makes it better.

It is also the year of the Snake.  More importantly a Water Snake.  This happens only once every 60 years.  Yes draw your own conclusions as to how old I will be this year.  

Just also remember the water snakes are the worst of the lot.  They are the most deadly, hard to see and sometimes cause funny things to happen in movies like Father Goose. 

See what happens when I drink highly caffeinated coffee. 

Too many sad things are swirling around me today.  I am going to go have some more coffee.

Thursday, January 10, 2013

There has to be a better way....

HIPPA has made everyone very so closed mouthed.  If they even acknowledge there is another patient on the floor, they have to kill you.

It is sort of like being in seventh grade and the mean girls are keeping secrets. 

I am so tired of being blind sighted with finding out someone had died.  Last night it was in a college newspaper. 

I know lots of people, I see lots of people.  We talk and share stories but not always e-mail and Facebook and Caringbridge and blog addresses.  Sometimes we don't know the names or diagnosis.  We don't snoop but we have a story about each of them.  This was Nerf gun guy.  He would be admitted, and often have a very young roommate.  He had an arsenal of weapons.  He would gather the kids and there were endless wars. 

I often was bombarded by soft brightly colored foam.  It added a moment to the floor's frivolity.

Well another bright, caring, loving guy has fallen.   Osteosarcoma is a bad thing.  I have long memories of this disease because as a child I remember my dad's concern for Patrick Kennedy when he had it.  He was only 8 or 9 and so was I.  They took his leg.  There was no other treatment for it.  Dad expressed concern about how it spread.  It loves lungs and other bones.   Nothing much has changed in all those years. 

Nolan is gone.  I think I will give the floor some Nerf guns. 
http://dailyuw.com/archive/2013/01/08/news/former-uw-student-granted-posthumous-engineering-degree


Wednesday, January 09, 2013

How To Properly Return Home.

Blow by all the Security Folks and ignore their plea that you stop and get a badge.


Load one wheel chair full of stuff, slip down Rocket/Bear Elevators, grab the prescriptions, get a New Cap Badge ( six month badge for kids like MEB and  load the car.

Return, find your child load her in, Stop by Starbucks. 

Unload car.  Go to Palisades lunch for celebration with Kira your lovely niece. Try and figure out why their bisque is better then yours.

Come home and put child to bed.

Nap.

Vow to never do this (hospitalization not Palisades) again.

Notes from the Ice Flow

Hoping she is coming home today.  I am hoping she gets some sleep here. Hoping she regains her positive footing. Hoping this is just an unfortunate bump in the road. Hoping Hoping Hoping.

"It is just a cold or the flu".

Boy I wish that was not the case.  In my world "JUST"  is not an option.  We don't get justs.  It is just a bump, it is just another week, it  is just one year without a real Christmas tree.

It is all about perspective.  Millions of people have colds and flu.  They feel bad.  They don't get hospitalized in strict issolation on oxygen for 9 or 10 days. 

Our ability to rationalize and make our brains accept what is happening is directly related to rest, right food and the time of day. Mornings are better than evenings and Mondays are generally better than Fridays.  Tests on Monday to Thursday are better then Friday to Monday AM. (Waiting for results is horrid over the week-end and we don't trust the baby docs.)  No visit it the ED (Emergency Department, because we have been insulting them by calling it the ER) is ever acceptable.  

So while we drift on this Ice Flow remember if we are bit curt, or less than encouraged by your words, that we are really cold out here.  It is very alone and we are the folks that have made ALL the good kind of cancer.  Really can any kind of Cancer be good.  

Meb is home.  We are about to go celebrate Kira's and Prince Catherine's (Kate Middleton)  birthday at Palisade's!!!!

 

Tuesday, January 08, 2013

Deep Dark Woods and Desolate Ice Flows

Quote of the Day


"Polar exploration is at once the cleanest and most isolated way of having a bad time which has been devised."
--Sir Ernest Shackleton


Betsy Hawkins and graduated from high school together.  She has moved over here and we reconnected in a nice way.  She has a great husband that loves to clean up my back yard.  But more then that she has been an emotional resource. 

One way she helped was to connect me to another friend of hers going through a Bone Marrow Transplant.  Roger is an adult, had a different kind of cancer but there is a certain sort of camaraderie among those of us in cancer world. 

Well things went well for Roger and then the Leukemia returned, with a vengeance.  He is coming to the end of his treatment and is struggling to travel from Salt Lake to Missoula where he lives.  There are lots of issues with transportation, insurance companies, sufficient oxygen for the journey, I can't even imagine.  None of it is good.  None of it is happy.  None of it is easy. 

I just happened to check in on their blog: http://bonemarrowboogie.blogspot.com and found the quote that starts this entry. 

I love it.  I reflects the isolation and desolation of this journey.  I had always pictured us in deeps dark woods with a myriad of paths and lack of good signage!

Maybe we are on an ice flow.

Say an extra prayer for Roger and Candie and they slide across this most of desolate places.  May they find a warm and welcoming shelter.

 

Basic Expectations

I am very  much a half-full person.  I was raised by Mary Foster Lanham.  She was sure that if a child had enough raisins in their oatmeal things would be good.   She felt Hitler did not have enough Oatmeal.

I do have some basic expectation.  I like the sun to rise.  The toast to be hot and full of buttery goodness.  I expect the coffee to be strong and it does not have to be hot.  I expect food to be cleared of anything made in a factory.  I expect people to be polite and trustworthy.  I expect good signage.   EXIT  is not a sign.

The University of Washington if failing to meet my signage expectations.  First all the buildings basically look alike when it is dark.  The campus map is wonderful and interactive  on a phone but if there is no map on the campus that says:  You are HERE  then interactivity is for the birds.  If there is not a single path or street sign and you can't tell Spokane from Sandpoint, then a map is pretty useless.  I had a horrible time last night "wayfinding". 

With the help of Kerry, I arrived in class, all most late and with a nasty attitude. Some kind happy delightful man tried to give me a pen and be nice but I was having none of it.  It was the first class and everyone was excited.  It is Training and Development and the women named Linda was there all excited to be our teacher.  I was grumpy and not very nice.

I realized how often our expectations can really screw up out attitude about the world around us if the expectations are not met.  It would seem simple to have fewer expectations and lower standards.  But if we expect less of the world then how do we maintain a half full, trusting world view? 

I will think about that today.  I am feeling 100% so I am letting myself out of prison and going to go explain my expectations to some people in the food department.  Then I am going have a chat with an arrogant resident.

Hope I meet someones expectations.

Monday, January 07, 2013

Both ends of the Spectrum

Mom has been sick.  Mary-Elizabeth is sick.  I have been caring for both of them.  Seems perfectly  normal but I wish they would quit tag teaming me.  I really need them to need me one at a time. 

I had promised Belle that I would be there for Karianna's trip to the "New Parts" guy but I knew when I said it, it would not be reality.  After a bit of time, Belle knew it would not work and we sent "her brother" Alex to be the voice of reason.  There are times there is need for someone else to be there and tell you it is okay and we will get through this. 

Alex has that calm Foster demeanor and the Lanham sense of humor.  That is ever so helpful.

Mom is feeling better and going to leave the house because it is Housekeeper Monday.  She is going put the dog in the car, drive to a breakfast place and have breakfast.  Big steps for her.  I don't think she has driven for several weeks, maybe months.  She should do fine. 

Mary-E is fighting off the needle pokes.  She is feeling well enough to simply tell them "NO" to more than one poke a day until she gets her port.  She has taken on her own care with a new sort of verve... I can tell she is feeling better.  

They both are feeling better.   I can turn my total focus to School, Parking Permits, and maybe even a UCard.  How cool is that.... 




Sunday, January 06, 2013

InFLUenza....

Boy.... is this a serious illness.  I now understand why people died. I should know better.  Most people think the flu is that nasty vomiting thing.  Wrong, Wrong, Wrong..  It is more likely to be a bad burger or some off may.  It is Norwalk virus sort of thing.  

This is not the same thing.  It is 

INFLUENZA


Questions & Answers
What causes influenza?

Viruses cause influenza. There are two basic types, A and B, which can cause clinical illness in humans. Their genetic material differentiates them. Influenza A can cause moderate to severe illness in all age groups and infects humans and other animals. Influenza B causes milder disease and affects only humans, primarily children. (MEB has A.  We know this because the hospital LOVES to culture stuff.  The rest of us are out of luck we have to guess.  Alergies, cold?  Sort of a Crap Shoot.)

How does influenza spread?

Influenza is transmitted through the air from the respiratory tract of an infected person. It can also be transmitted bydirect contact with respiratory droplets. (People, keep your secretions under control!)


How long does it take to develop symptoms of influenza after being exposed?

The incubation period of influenza is usually two days but can range from one to four days. (If I had it, I must of caught it on the plane.  I wonder if Laura Breshock was sick, because we were on the same plane)


What are the symptoms of influenza?

Typical influenza disease is characterized by abrupt onset of fever, aching muscles, sore throat, and non-productive cough. Additional symptoms may include runny nose, headache, a burning sensation in the chest, and eye pain and sensitivity to light. Typical influenza disease does not occur in every infected person. Someone who has been previously exposed to similar virus strains (through natural infection or vaccination) is less likely to develop serious clinical illness. (We were both vaccinated... What is up with that!!)


How serious is influenza?
Although many people think of influenza as the "flu" or just a common cold, it is really a specific and serious respiratory disease that can result in hospitalization and death.


In the United States, the number of influenza-associated deaths has increased since 1990. Influenza disease can occur among people of all ages; however, the risks for complications, hospitalizations, and deaths are higher among people age 65 years or older, young children, and people of any age who have certain medical conditions. (BMT patients!!! on two kinds of immunosuppresents?)

I have been watching this bug work on my poor daughters body. She is so fragile physically and emotionally. She is being really mean to her mom and that is good sign but then it tells me she is really scared.  She has been dealing with a dry hacking cough for two weeks. She is exhausted, having a hard time sleeping and her lungs are not working very well.  Now she has some sort of red bump on her arm... Because life threatening virus's are not enough. 

Now I have the sore throat.  Very dull present and uncomfortable.  Yuck.   I don't want to get sick again. 

It is just time to stop all this nonsense.  I have school starting tomorrow. Mary-E has school to do.  A Circuit's final and some deep philosophy reading and writing to do.  We need this to be done.  

Now.... Please.  2013 is beginning to make me mad!!
 

 

 




Friday, January 04, 2013

She was mad at me today...

She was sure I would fail to bring back McDonald's apple pie.  She was upset and hungry and wanted bad food and she wanted it NOW......  She wanted sleep and she wanted it NOW.... She wanted a bath but was too tired to have that but she wanted it NOW.

She is about 3 right now.  It is a good sign.  That is the age they really start to fight for themselves.  It was just one of those days.  Full of little setbacks and no real end in sight. 

Step forward: There is a plan in place for putting in a new port. 
 
Step back: I left to pick up lunch and during my absence they needed to take out the much fought for IV. She is afraid she will have to have another one.  I have assured her they are not  going to do that without me there and after a lot of discussion about alternatives.

Step forward:  Her cough is becoming productive.  

Step back:  She coughs so much she can not sleep.

Step forward:  We finally had a discussion about making sure she gets some sleep.  
Step Back:  Shift Change and we have to do it all again. 

It is the little things.  I left to take care of the dogs and because I don't think I am helping.  I am going to go back after some dinner and drop off some sugar free cough drops and some food.  She is not really hungry but will be later and we know there is no food for her at the hospital beyond the satsumas and jello.  

Sleep will help her more than anything.  Today was the first day she mentioned wanting to go home.  I am hoping we can make that happen in a day or two.