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.  

Shifting Focus

Sometimes it is hard to make the shift.  Sometimes we have so much on one plain we don't see the other side or have another view of the world. 

I was reminded of this when I saw this picture.  I clearly stole it from an amazing photographer.  

 Are we coming or going?  Beginning or end? Start or finish? I guess it is the old "To Be or Not to Be? That is the question.

I think I am so beyond the worry and concern.  I think I can help other's who are starting the voyage but it takes just a moment, a note, a post, a call, an old picture, a question, a piece of paper to have it all come back in a rush.  Classic PTSD. I wonder when it does go away?

Meb drove herself to the eye doctor today.  She went to see Dr. Balter.  The same eye doctor who found the swollen optic nerves 10 years ago.  10 years of our lives have passed since that fate filled day.  120 months 3650 days.  One thing I can say is I sort of really know what has happened during these last 87,600 hours.  Oh do I know what has happened.  

Okay, so I have decided we are taking off.  We are not landing, we are not sitting around on any old daisy and just waiting for life to speed by too fast.  (Speeding is only for Iowa highways)

Sometimes Dreams come true we are waiting for the the next bit of great news.

WE had an appointment today. Things are so good we don't have to go back for 28 days.  A month, 2 fortnights,40,320 minutes. So what great news!  Now we have to call if she something comes up. So we have to watch for spots and bumps and other things that cause worry.  Pimples, weird food craving, sudden growth of purple and pink hair, a desire to clean the basement.. that sort of thing.  Mostly we have finally reached the point most people reach on day 100.  I will take it.  I will make sure we enjoy every one of these 28 days. 

My focus is shifting to help mom work on moving to the Senior Dorm and recovering from impending hip surgery.  She is a tough bird and we all expect her recover to "exceed expectations" I also am aware there are huge risks in any operation.  Mom is very clear on her wishes and she is going to be fine.  That is my story and I am sticking with it.  I also always have an uneasy feeling in my gut about the whole thing.  I know too much.  She will be fine. It will be fine. Fine I say, Find I say.

It is good.  We were able to see Kaylin today. She is in love with Justin Beiber and he met with her when he was here.  It made her really really happy but what made me happy today was to see her walk into the hospital. Since September 2011, I had never seen her out of one of those large jogging strollers. We saw her today and it was wonderful. 

 You would not recognize her.  She is coming off prednisone and her face is going back to normal but best of all her hair is getting really really long.  What a great gift.

 

So now we wait for the results on Alistair.  She is a special little friend of ours we hold in our hearts and squeeze with all our power.  This is a much loved little girl and her relapse was so so awful for everyone.  When I told M-E she went completely silent.  She went to her dark and quiet place.  It took a while for her to return.  When she did we delivered a Bitty Baby.  Nothing more we could do but pray but always good to have a distraction while waiting.   We visited for a few minutes today and are waiting to hear she is in an acceptable kind of remission for a transplant.  Her cancer (AML) is particularly uncooperative sometimes.  It does not like being poked and prodded. But transplant is the only option and there has to be a bit of a miracle for that to happen. 

 

I thing we are due for a few Miracles.  I need one for her.  

 

 

   


  

Long Drives and Short Stops

Went on a quick jaunt over the mountains, through the high desert, through the winter wheat fields to Spokane. 

Watched Samuel Page become an Esquire.  He has only the "bar" to jump over and then he is off to work on his life as a lawyer. 

Gonzaga does it right.  Lots of good speakers, some  nice bag pipes and a president that looked a bit like Dracula but then maybe that was what he was going for with a bunch of new lawyer wannabes as his main audience.

Mary-E was able to catch up with a couple of her friends. One friend graduated, another will be there next year.  Spent some time with Father Housman.  He took us on as a special project during her transplant.  He some memory issues but eventually makes the connection and then becomes totally present for us.  He had a stroke 5 years ago and taught himself to walk and talk and all the rest.  He will be a good guy for her to have around.  He walked us out and then began to walk like a bat out of hell.  I think ME nailed it when she said, he taught himself how to walk and is like a toddler, he has one speed.

It was a good way to begin to grasp the real possibility of returning her to school.  She is willing to leave the Children's Hospital bubble and feel better about it.  Little connections to what she knows and remembers.  Leaving happened so fast.  Hopefully re-entry will happen with a bit more control and organization.

We have been on the world's longest road trip.  Time for it to come to an end.  Tires are good. Oil has been changed. Car will be washed.  Three months.  We will do the trip again and when we do it will be to end Cancer Part II.  Need to figure out something spectacular to celebrate, other then a Blizzard at Dairy Queen in CleElum.

I abandoned Dante but HE IS BACK. Level 8 has lots of levels.... Bolgia 1.

So conscious fraud and trenchery.... interesting if you think about it. The other levels are a myriad of bad human behavior like murder but deep in hell and in Dante's mind this was worse.


Bolgia 1: Panderers and seducers march in separate lines in opposite directions, whipped by demons  Just as the panderers and seducers used the passions of others to drive them to do their bidding, they are themselves driven by demons to march for all eternity.


Pandering: is the act of expressing one's views in accordance with the likes of a group to which one is attempting to appeal. 

In cancer world we really don't get much of this, at least at Seattle Children's.  We do see the adds for places that are almost guaranteeing a cure but they must have anti-pandering classes all the time for everyone.  As parents we have a list of stuff we want to hear.  We want to hear only about unicorns and rainbows and that there was a mistake and it is all over.  

We do a fair amount of "Self-Pandering" .  We often don't want to hear the truth and we do what we can to make sure we only hear the things we want to hear.  She will be okay, she will have a long full life, she will be able to have children because 1% is really good. 

Maybe there was a special level in Hell for panderers because as a group, we fall so easily for the good news. 

Seduction is the process of deliberately enticing a person, to lead astray, as from duty, rectitude, or the like; to corrupt.

I read this and laughed a bit inside.  Oh are we easily seduced as a group.  Just watch 2 minutes of commercials.  Creams and pills and instant weight loss.

Our biggest fault is if we just follow the rules, inject poison and death ray our children, it will all be okay. Maybe just one more round, one more poison.  Maybe if we just give it time, maybe if.....

We are all seduced into thinking it is going to be okay.  Sometimes it is not. 

I don't think there is any harm in hope and I believe in Unicorns 



 

Our Small Circle of Moms.

We all know that Meb has a dead part of her bone.  She is thankfully not in pain and her steroids are going down but it is a problem.  It is not a huge, pull it out and replace it problem but it is of "Grave Concern".  So how do we address it you ask. 


Some swimming, some gentle walking, some yoga, some high calcium rebuilding chews, do-able stuff.  So yesterday we went to Seattle Children's before even the Valet guys were awake, (7:30 am).  We settled into the Physical Therapy waiting room and it was very quiet.  One poor child with over active nerves in her ankle beginning and intensive 2 week rehab program, and a Chappy kid. 
Dr. Chappy Conrad, is a gaulky awkward guy that takes out bones and rebuilds them in kids with bone cancer.  You can tell the kids, bald, braces on their legs and usually a spot that just won't heal on a long incision.  We were all chatting and in came a child, 6ish, with a pregnant mom. 

Child sounded like a TB patient with snot going everywhere when he coughed and sneezed.  We did not stay but were luckily leaving.  I suggested to William's mom they get into a safer place and the snotty child's mom was not happy.  "He has asthma, he is not sick!"  I left.  I did not have a chance to let her explain how stupid I was to doubt her judgment.  Now, I would have loved to talk to her about donating her cord blood as she was obviously pregnant but had to let it go.  We were off to another clinic, not at the hospital.

Here is my general apology.  I am so sorry I hurt your feelings.  I would do it again. I won't expose her to anything if I can help it.  I certainly am not going to sit in a small confined space with a leaking child. 

We all have to do what ever it takes to keep our kids safe.  Cancer Moms are a crazy bunch when it comes to such things.  We live every day with huge amounts of fear and trepidation.  The smallest thing can push us over the edge.  And once we are over that edge, we don't recover very well.  We have no reserves. 

So if you encounter us and we shun you with disgust, please don't take it personally.  Now I have to find my dinning room table.   

Greed.... Level Four: We just want to be back to Norma

Virgil:

 saw multitudes
to every side of me; their howls were loud
while, wheeling weights, they used their chests to push.
They struck against each other; at that point,
each turned around and, wheeling back those weights,
cried out: Why do you hoard? Why do you squander?' "


 We live and die by protocols.  Long pages of stuff that determine what is next.  Dates of treatment, types of treatment, rules about when there will be treatment.  It is pretty amazing how difficult and complicated it can be for all involved.  More then once I got us prepared for a hospital stay and then the "counts" were not right.  Or we just went in for a blood draw and ended up staying for a week or two.

Oh Cancer parents are greedy and we hoard and squander like the best of them.  We pursue health and any small moment of laughter.  But most of all we want to be normal.  We want to look at a calendar and know that what we think is going to happen will happen.

We mostly want certainty and we live in the most uncertain of all worlds.  The world where nothing looks right.  Sort of what I imagine an LSD trip would be.  Everything is the same but just off.....  We are tired of not knowing what is going to happen or in some cases not happen. 

A hard part of level four is the isolation.  Most is self imposed but some comes from people being afraid to ask you what is going on....   No one wants to ask the question and find out how bad things have become.

My sister called and asked what was going on and I realized we have been doing nothing.  Mary-E is processing and in a dark hole.  She sees no reason to get out of bed right now.  It takes her a while to figure out things but there is an appointment next week about her GVH and she is worried.  She has failed to taper 3 times and really really wants off the prednison.  She knows it eats your joints and causes other mega problems.  So she withdraws, I try to tempt her with short forays into life.  It will be fine.  It is just a bit of a rough patch. 

For the record, I never took LSD and the day the guy that invented it gave it to the medical students at GW.  My dad was in the hospital recovering from appendicitis.  

Quiet Moments.

are sometimes scary.  It is during those time the darkest thoughts can creep in and take over.  They are also the most creative and most productive. 

This is when I have these thoughts that in the outside world make no sense at all. For example, today I was drinking my coffee and was checking in on my Facebook page.  Small but present post. 

There's a new post about Owen on Caring Bridge http://m.caringbridge.org/visit/owenohara

Owen is the child of Jackie. They live back east but the internet has connected us.  Owen had a transplant, he has been sailing through.  Life has been good, they are getting ready for a Make-A-Wish trip. 

Then BAM..... Leuikemia is back. 

It just made me furious.  Maybe because of where I sit, I see this sort of thing but "Why in the Hell". 

I know there is no one to blame.  I am certain there is no God or Supreme being involved.  I know "things happen"  but for most of our kids, our cancer kids, they have had ENOUGH. 

I wish cancer was sort of like the mumps.  You get it once and then you are done.  You spend a few days on the couch listening to radio dramas (I had it when I was in 3rd grade and there were still radio soaps) and then you are done.  I think Cancer is more like Chicken Pox.  You have it, it is over but the threat of Shingles lingers on and on until your die.

I have had enough.  I have had enough of relapse and new spots on scans and children dying.  It is time for all of this to go away.  I want to return to a world of Unicorns and rainbows and sparkles and shiney things. 

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.

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. 




   

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........

Sometimes the Dragon Wins and Sometimes he does noT!t

During my lawyer days I found a version of this on the wall in a small work place for the weary court house lawyers.

 

 

I am pleased to announce that no Dragon is winning in this household. 

 

We met with Dr. Tracolimus today and went over all the numbers.  I had been pretty upset the last time we met.  I was confused and angry and frustrated that we had transformed from happy kidney land to be careful because if you eat one too many pieces of sushi, we will be doomed for eternity to dialysis and eventually kidney transplant.  I have had quite enough transplants thank-you very much.

 

They had has some serious discussions and her improving creatine level has led them to back off from Stage three Chronic Kidney Disease.  At worst it would be 2, and could be less if she keeps presenting good numbers. 

 

Big sigh.  I have so afraid if we could go from nothing to 3 in a month, we could be looking for a Kidney sooner rather then never. 

 

Side effects of one transplant is enough.  Off to buy sauerkraut to make soup.  I will let you know if it is good........

It seem different this time.

There is this little voice in my head that tells me to organize 1500 blog posts and write a book. Maybe a Dummies Guide to Cancer World Survival. In going through Cancer part one, I am realizing how different Relapse World is from the first time around. There are two books here.

Part One is an easier book because in most of the cases there is an end in sight.  While no one believes it when they are starting Cancer World does become more manageable.  You learn that the schedule is a lie.  You can't count on counts. The side effects can be managed.  Essentially you learn to cope.  You learn to go with the flow, accept help and you let other people fold your laundry.  You can see the end and can sort of power through. 

Now there are plenty of bumps in the road.  Weird infections, blood clots that require constant attention, hair coming and going, different color chemotherapy, long lasting effects from all of this treatment.  It is hard.  It is excruciating.  Lots of people just fall apart.  But there is an end.  Once the panic subsides and you are able to look around it does not take long to get to "We have the good kind of cancer." It is doable.

Relapse World is ugly and treatment and the emotional roller coaster is so different.  First there are no answers that can be given.  It is much more terrifying because when it didn't work the first time, the doctors are more afraid the second time.   They pretend they are not but they are much more nervous.  There is no clear and certain protocol. No straight line.  It is more like the Harry Potter Maze.  Lots of dangers and low cure rates. They know that we can exit the maze unexpectedly and many have.

It is more frightening because they have to take out the big guns.  The dark blue chemo's, the big radiation machines, the big double lumen Hickman lines.  Nothing is held back.  It becomes very clear that there will be no passes, no skipping of chemo, no withholding steroids for an impending dance.  It is serious and terrifying and mindbogglingly.

But again, like last time, you settle into the ride and close your eyes more, retreat to watch 650 episodes of Dark Shadows.  You limit your contact with the outside world.  No big plans for trips are made, no end of treatment party is planned.  You begin to wonder if you will ever trust again. You get angry faster and more often.  You start to want to kill people who say things like "What do you do all day?"  "Why does Mary-Elizabeth still have to to go the hospital?" "Isn't it over yet?"  Its never going to be over!!!!!

I guess we are sort of like the Upper Classmen in a very small and highly competitive and exclusive school.  Our job is to be leaders and help the younger classmates through the process.  We share the secrets of how to survive in the hospital, and what much of the jargon means. We help the other parents by listening to them and assuring them they are not the first to be horrified by _______________________.  Fill in the blank.

As the Upper Classmen we are good sounding boards but are reluctant to share our stories too freely.  We remember the blood curdling screams that when off in our heads the first time we heard the word RELAPSE.  We know better then to let the new people know our story. 

The biggest difference now is the size of the group of relapse parents.  It is a much much smaller clan. Very reserved, very scared and have good reason to be. They don't here numbers like 85%, 90%.  They hear 40%, 10%, or even worse....  Plan a trip to Disneyland... and not in the happy Make-A-Wish sort of way. 

There is also the death thing.  I only remember the loss of two kids during our first round. Both relapsed before they were done with the first part of treatment and both died.  This time is different. Kids are dying before they even get to transplant. When one dies, we all have to work very hard to regain our balance.  Each time it happens it takes longer and longer to straighten up again.

The one thing that is not different is that we still are supportive of each other.  We still reach out, we still go the extra mile. We still have good things to share and lots of support and love to give each other.  We all live with the knowledge that we are fighting the most important battle of our lives. 

I still think we need to commit to cure this thing and learn to prevent it. 

So, I am back in my Go With the Flow Mode.....

A week or so ago, I took a phone call from someone at the SCCA.  On the other end of the phone was a lovely, kind, smart, caring doctor asking me some questions.

To the normal happy go luck parent they would have been simple questions.  They would have been answered and then dismissed as nothing to worry about. We will do a couple of tests and see how it goes.

I am like the hyper alert crazy person when it comes to my daughter.  I have a 12th sense when a call comes and I analyze everything to the nth degree.  I hear what they say, imagine what they don't say and I go to the deepest, darkest place in the Universe.    It is my blood and in by very being. 

I have no choice.  I was born on the Salmon River, the famous River of No Return.  My  river looks like this.  Not a nice straight or normal river.  It is full of twists and turns and rapids and hidden rocks.  Remember once you go down this river, you never go back. 

When I receive one of those calls, I feel like this.  

 

I tell myself it will be all right, I think about what could happen, I call my family, my friends and share the panic.  I don't want to be one of those crazy wolf crying persons but  we all have to remember where we are in this journey.  We are not done with this river, yet.

 

So more appointments, some things to do and drop off, more blood to be let.  School is a good distraction.  I am picking up the language and looking for the secret handshake.  I think I have to do an MBA but that needs to wait until next month.

 

Floating Along.

 

 

 

 

 

 

No Kidney Transplant tomorrow.

Okay, maybe my imagination was a bit off the wall but then who would ever imagine having a child with leukemia twice? 

Back from the appointment and her creatinine is down, not normal but down.  Lots of tests are being done but results will take while. 

 The ultrasound is still on for this afternoon at 4:30 and then we should no more tonight.  They are looking for the following:

a. Evidence of a dissolved or current blood clot
b. Evidence of something like a kidney stone
c. Anything else that might be hanging around and not allowed.

The blood tests are going to look at her liver function and also see if there is any BK virus.  She had it in her bladder last time and it causes major major, horrible, terrible, bone chilling pain.  We were assured by Dr. Tracolomis that if it is in the kidneys there is no pain associated with it.

So we wait, we wonder and I quit saving for a Kidney Transplant. 

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.

 

 

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"

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.

Loving Gonzaga today.

She is sort of going back to school. 

Because her immune system is so compromised  and she had no immunizations because she can't have them because she is taking something to keep her immune system compromised.....  see what I have to live with everyday.

She can't go to school in a classroom.   So everyone says, "Can't she take on-line classes?

Oh yes she can but college is not on-line classes. It is planning dinners for the neighbors, watching Big Bang and eating pizza with the boys.  It is late night study sessions that turn into tired hysterical laughing sessions.  It is trying to wake up your roommate for a class or going to a movie or bra shopping.  It is so much more than going on-line.

The biggest obstacle has been her course of study.  She is in the Engineering Management program.  Classes have to be taken in a certain order. 

Yesterday she heard from her advisor. They are working on developing a way for her to take her circuits classes on-line.  She was hesitant but was so happy once those fears were overtaken by excitement.  She also found one of her really good camp friends is going to be attending SPU and won't be "leaving" for college.  Anne has a car, loves Mary-E and there will be a chance for some of the very necessary social pieces of college.  Sort of.

At this point we love Sort of..... We totally love Gonzaga.

The sun is up, I should walk the dogs.

The Plan:

Water the yard.
And feed the birds.
And floss my teeth.
And fill the yard waste bin with something I don't want.
And do some more desk clearing.
And do some laundry and hang the sheets out to dry.
And rake up the irritating pine cones on the side of the house.
And do some gardening on that side and maybe plant a tree or two. 
And decide what outing we can do today to get Mary-Elizabeth to do some more walking.
And call my mom and tell her about the newest news on Featherville Idaho.
And look on E-bay for Ice cream forks lest I ever return to the 1988's.
Contact my newly found Barnes Cousins and send them some pictures of the family and plan a mini-reunion.
Go on an archaeological dig and find more pictures in the basement and everywhere.
Talk to friends.
Figure out something for dinner.
Finish War and Peace
Finish the two quilt backs so I can start a new one. 


Reality:
Some watering,
Potatoes dug,
The yard waste filled a little bit,
The Russians are almost to Moscow
My cousin Jane came over.  She is moving to Seattle and lots to say.
Trip to Snohomish in search of a desk for Mary-E
A lovely lunch at a Thai Restaurant,
Lots of walking around a cute little town,
Child not exhausted and would like to go again.

Sometimes the things you end up doing are much better than the Plan.

 I think the Spaghetti Nebula just happened without a plan.