Eagle Sighting

WE are bird watchers.  Binoculars, feeding, listing making, discussions,  Come Look.... It is the story of my life.  We are observers. We were trained to see things other people don't. 

In fact after I took the MMPI (some sort of test established to figure out if you are sane) during law school, I was called in and asked about some of my answers.  I had answered yes to the question:  Do you see things other people don't?  I answered yes.  I do see things other people don't.  I am more observant and aware.    A gift and a curse.  

I see pain and suffering in odd places.  It does not leave me. I read between the lines, I observe the silence and lack of communication as a sort of communication. I don't see dead people but I see very sad and hurting people.  It was the best and the worst of my lawyer time.  I wanted to help. I want to make it better. Many things can't ever be made better. 

MEB is doing great. But she is deeply deeply scarred and will carry those within her being forever.  Many are not visible. They are there.  Sometimes they rear their ugly head in odd ways. Panic over bad grades, worry about when a check will clear, avoiding new things.  Now lots of these are very normal stuff.  Hers has a bit of unusual intensity. It makes me worry but then I don't think there will ever be an end to the worry.  

We went to a special birthday party yesterday and went for a walk looking for a beach path.  She would not enter the wooded area even though it was raining and dry under the branches.  She fears the woods because of the fungus, the mold the stuff in those areas.  No amount of coaxing would work.  Instead, I left the dry and we walked up a pretty impressive hill.  5 flights on the Fitbit. 

 During the walk we were looking up and down and out on the water. Then it was spotted, the large mass of dense sticks tucked in the top third of a Douglas fir.  We had seen a couple of mature Bald Eagles flying around and now we knew why.  A moment of quiet observation of a good thing.  The sort of observation makes you think about things grander and more mysterious. A special moment of wonder.

Then there is the really frustrating bit of observation. A new bird, a flash of yellow, serious concentration on the small black and yellow being searching for food.  But sometimes even with the most astute observation can be thwarted.  Somethings are so very difficult.  One of these visited. I will never probably know which one it was.  It just was one of them.

One thing I have learned is that a flash of observation sometimes has to be enough.  We seldom really ever know the answer.  

Piles of Pennys

So how long will the penny be around?  Canada has stopped using them. We have them but they feel weird. I have a big jar of them because we started saving change a couple of years ago. Or to be more precise, I started to save change.


Some are shiny. Some are old and tarnished. Some are really made with copper. I even have a couple made of aluminum from WWII times. We are attached to our pennies. 


 A penny for your thoughts.
A penny saved is a penny earned.
Penny wise but pound foolish.


No one really pays attention to them but I bet if we just stopped using them on a certain day, there would be screams.

I think like many things the penny will fade from our memory.  It will be something we think about when we run across those spare ones fallen in the corner of a drawer.  Insignificant. Minor. Minuscule, not worth the bother.

It makes me wonder what else we have let fall in the drawer.  An unfinished letter, an old stamp, a memory card, a cord from a long gone electronic devise, a half-used up pen, a key, a broken chain. Things that seem to have slipped away from our lives. 

Because I know things can slip away, I try really hard to keep in touch with the important ones.  I am working on people right now.  I figure what is the worst that people can do be ignore me.  (Not that I am easy to ignore.) I want to make sure I contact and connect with people in a real way.  A call, a note, a real cup of coffee. An invitation.  It is not necessary for the house to be perfect or even acceptable.  No one notices I have a pile of piles that needs to be filed or bits and bits of projects on my table in progress.  A book or 10 on the coffee table might lead to a good conversation and some exchanges of ideas.

I guess as my soul energy returns I can reach out more.  I have been in a quiet place for a long time.  A place of self reflection, a bit of self pity, a place of worry and deep concern.  A bunch of pennies have piled up and it is time to use them.   

I am the Mother of a Bonifide 17 year old as of April 12, 2014

Yes her age in the US is 21.  If she was in Korea it would 22 and if she were in Saudi, who knows (they have a truly complicated calendar.)


We all know she is an old soul.  She never was a child. I remember a time when she was about 9 months old and lying on the bed, looking at me and talking. She was just jabbering in completely sensible statements with lots of meaning and inflection.  I was not able to understand but it was at that moment I realized she was never ever going to "not talk".  She is an old old wise soul.  She carries cancer around with great grace.  She doesn't flaunt it, she doesn't explain it, she uses it to her greatest advantage.  Not in a bad way. She is able to take the lessons learned and apply them to her life.  She is very serious about school and picking her friends.  She knows she has to say no to lots and lots of things.  She has watched death swirling around her and knows lose as no one should at that age. 




She has lost 4 full years of her life.  Two years during Cancer Part I and then two during Cancer Part II.  She did not have the energy to keep growing emotionally.  She had to keep focused on getting well.


Driving was a big example.  


She took Driver's Ed at 16, pretty normal.  I could never get her to drive after that.  She just would not venture out.  I remember taking off the moment I was able to drive and never stopped.   I even bought her a car in anticipation of her driving.  Okay it was a tank but it would protect her when she ran into those things that jump out all over the place when kids learn to drive.  


Well she just didn't do it.  No driving. No real movement.  My mom finally told me to "leave her alone!!!"  She told me ME would drive when she was ready.  She always had her own schedule and was going to stick with it.  Mom was correct in that regard.


ME decided it was time. With the help of John Carden and several hours of driving and cones for parking practice.  I guess she does great without her mom in the car.   It is all good. 


She scheduled the written test and passed. She scheduled the driving test and passed. She went to the licensing bureau and they took a wonderful picture.


One more step in the road to normal. Hopefully the transplant will give her the years to catch up. Boys are next.  Her dad can worry about that!....

Windchimes.....

WE have lots of them.  Lots and lots.  My ear only likes certain types.  They need to be tuned.  Not just clanky.  They need to happy sounds.  They clear the air and the surrounding area of bad vibes.  They must be willing to become tired and faded over time.  A bit of rust seems to be all right.  It is a good thing.  clear crisp sounds. 


I recorded some of the night sounds.  It starts with slow movements of the trees, there is a rustle in the magical Douglas fir in the neighbor's yard.  It gains some power as it flows through the rest of the grove.  Then they start.  The first clang of the rough, single temple bell, the various chimes join in, followed by the gong. The garden gong.  A virtual cacophony ensues.   As quickly as it starts the silence returns.  


On a good night they will bang and clang with great enthusiasm.  Great fervent evil spirit banishing sounds ring out.  Mostly we have to be happy with a bit of some tinkling. Gentle reminder of the presence of good spirits.


I found a new set the other day at Good Will.  Brand new, Woodstock Chimes.  Olympic... power of the ancient gods.  I know why they had been donated, they are deep and resounding as they sway with the trees.  They have a whole area of their own.  One set it all that is needed outside of Mary-Elizabeth's room to keep away lots of goblins.  Lots and lots.  


I need them.  A small barrier against the never known predators stalking us.  I am not sure how to keep the demons away.  Sort of like garlic against vampires.  Not sure if it works but know it is something I can do.  It is one small thing. I guess it is why the tiny chimes are in the Wishing Rock bags.


Every day I read about someone just beginning the Cancer World journey or the Bone Marrow Process.  I take a moment, feel the panic, take a deep breath, say a bit of prayer and answer with a comment.  It is not a usual comment.  Even today I don't really understand how horrible the process has been.  Day after day, week after week.  While I was responding to a mom, I came up with the name of my book.   "It Certainly Isn't Like it is on TV!!!!!" 


Please come visit on a windy day.  Enter through the secret barrier of the chimes.  Know they are there for everyone.  Each a message to those we have lost, those who we will lose, all who are fighting, all that hope to never have to fight again.  

Marys and Sallys and SallyAnn

I had an interesting conversation with Esther Smith last night.  It was midnight her time, in New York City.  (She and I have a weird connection about Address Books and a bunch of other stuff.  She teaches at Cooper-Union and her husband runs a Printing Press company Purgatory Pie Press.  Worth checking it all out.)


So last night she posted a question about the following sentence: Mary's going to the store to pick up some coffee for Mary's brunch tomorrow.  


So the question revolved around the issue of Mary's as a possessive or Mary's as a contraction for Mary is.   I love questions like this because if you made the statement with the spoken words others would understand you.  We say it all the time and don't think twice about it.   Mary's = Mary is if the context makes sense.  But when it is written, it is clearly incorrect.


Sally's writing a blog post this morning.
Sally's blog was about Sally's blog.


Perceptions, expectations, reality, it is all such a slippery slope of words and other such nonsense.  I have such a different reaction to everything I read and hear than you do. We each have every thing filtered through our own life experience.  It depends on so many things.  Something as simple as how tired we happen to be or what has gone on that morning.  How frustrated, how emotionally spent we happen to be.




Because of my lawyer training, I don't quite hear things the same way as you do.  I usually ask the question more than one time because I want to make sure I understand.  It is just something I do because there are so many ways to say so many things.  We all live with assumptions and make them at the most inopportune time. 


It made me think about Marys and Sallys and all the rest.  I have found I definitely carry two Sallys with me most of the time.  One is Lawyer Sally.  Outside Sally, Hard to get along with sometimes Sally.  She sort of heads out into the world read for battle.  SallyAnn is not like that at all.  She is about 10 or 12 years old.  She sort of was stuck when her brother Eddie was taken to Napa State Hospital.  It did not make sense to her why he had to go.  So she is not quite grown up yet.  She still likes to watch old movies from the 50's and loves Cream of Mushroom Soup on everything. 


The Sallys knows lots of Marys.  Her Mom, her Mother-in-law, her daughter, Mother Mary, several cousin Marys and Aunt Marys.  Lots and lots of them.  She feels a certain comfort in all the Marys in her house and her life.   Marys keep her centered and her feet on the ground.  She seeks them out when she is upset and is a bit confused and worried and panicked and generally out of sorts.  The Marys give the Sally and SallyAnn a place to rest and they catch her all the time when she is floundering.  


Sally's blog is a lot about one Mary or another.  SallyAnn knows that no matter what has happened to Mary-Elizabeth, Mother Mary also had it bad.  Her child suffered and died in away she never imagined.  


So Mary's keeping me sane during this time of growth and transition. Now who knows which Mary's providing the solace and balance but since I have lots in my life, we can rest assured it is one of them. 


(Some have commented on how my writing in this blog should be more polished.  I don't think Lawyer Sally writes here.  There is a smaller more confused scared SallyAnn that is the main writer. She writes when she is scared and hurt and overwhelmed.  That is her best stuff.  She pours her heart onto the "web" and in a sense lets it go.  Sometimes, like today she is just babbling but feels a need to express some babbling. Rest assured, some day grown up Sally's going to do some editing. )               

Thoughts on Change

"Everything in the universe is constantly change and nothing stays the same and we must understand how quickly time flows by if was to wake up and truly live our live"

Jiko, from A Tale for the Time Being.

But how do we know if we are awake?  I guess that is only one of the questions.   Do our dreams prod us? Do our fears let us know we are slacking or we are awake?  I wish I knew the answer to all of that but I suspect the definition is different for everyone. 

I know we all expect to live each day to the fullest if we are that sort of person.  I think some are more bold than others.  Some are risk takers, some are risk avoiders.  I know for sure my daughter is a watcher and thinker and she does not make a move without much cogitation.  The whole menu is read before a decision is made.  I am more of an impulsive person.   Both methods are good things.

I suffer from a fair amount of PTSD from the whole cancer twice in a decade thing.  It changes you but I think it does so for the better in lots of ways.  It certainly opens you eyes to another realm.  I am entering the alumni role now.  We have graduated, so to speak.  It gives me time to reach back and try to help those in the midst of the process. 

I remember when MEB was first diagnosed and St. Joseph came to the rescue.  The school, the church, the families.  The first on our door step was Rick Boyle.  He has been at our side during all of it, the first diagnosis, the relapse everything. It was an amazing gift and will never be forgotten.  Not to say everyone did not do something of great value at the time.  He was part of my new tribe.  He knew in that way only one in the same situation can know. 

After induction to the tribe a creation of new part of your being happens.  Sort of like a growth.  Maybe it would be better to think of it as some sort multiple new neurons in your brain.  It can't be removed and it sort of becomes your friend.  That bit of growth gives you more compassion, more insight, more creative powers, the ability to help those in your tribe survive.  It makes you know things no one wants to know.

So our time in Cancer World keeps changing who we are and what we see and do.   I am trying to make it less of who I am.  I don't know if I will ever be free of the worry and anxiety it produces.  I find that if I can help someone else and focus on their journey, it helps. A lot.

Change is always changing.  Time is always moving forward. I have no control over much.  Mostly I think I have control but then I am very very wrong.   Everyday I try to do positive things for others.  Good things for myself and keep moving through life   Awake.

Busy Busy Squirrls

When I was a kid we had a house in Spirit Lake Idaho.  It was a great house.  We had a big lot with three giant trees on the other side of the street with big maples on our side.  We also had a sour cherry tree on the side of the house but mom sort of hacked it to death so she could see the lake while having coffee in the morning. 

One day we happened upon a large bag of nuts and Mom dumped them at the base of a tree.  We left to do some errands or go swimming or go visit Grandma and Grandpa on the other side of town.  When we came home there was still mass activity.  It went on for hours.  The squirrels did not quit until each and every nut was gone. 

Mom felt awful.  She was sure they were exhausted.  She never ever provided an unending supply of nuts to them again. 

Mary-Elizabeth is very Squirrel like.  She starts a project and will not rest until it is done.  She does her homework ahead of time.  She spends hours and hours on something until she really really understands it.  The hours she has worked on her homework and her test prep is amazing. 

I remember how things went when she started 8th grade, still in treatment, still suffering from nasty chemo brain and the radiation was still reducing the brain cells.  She would come home from school and start studying and did so until she went to bed exhausted.  Every day, every week-end every break.  She was like the squirrels.   Despite everything she graduated with Honors from Holy Name Academy, was accepted into 9 of the 11 schools she had applied. 

She struggled as every freshman struggles but finally was able to be a successful Gonzaga Student.  Many more hours, lots of study groups, tutors... what ever it took.  Then.... September 28, 2010 the leukemia returned with a vengeance.  Now remember she did go take her tests before her school ending blood draw.

One Relapse, One Double Cord Blood Transplant, Two years of struggle and pain and misery and back to Gonzaga.  Hours and weeks of study and more tutors and time with professors and lots of other helpful people and ME was finally given proof hard hard work pays off.  Yesterday she received a letter from the Math Department letting her know she was one of 50 out of over 1000 nominated for the math prize. 

 

 

 

The squirrels had their dens filled and ME has filled her brain one hard problem at a time.  Go MEB!!!!!

Darn I wish I would have thought of that earlier.

Mary-E is doing great. She is thriving, she is applying for Engineering internships. Her professors are happy with her progress. She is at the top of her game.  I should not complain, or worry or even note this ongoing sadness in her life.

Every time she sees a new baby or a small child she melts. Every time she has a hot flash she melts.  Every time she realizes she will never have a baby of her own making she dies a little bit in side.

Why in the hell did I not make sure she had some of her eggs frozen when she was between treatments?  Why?  What was I thinking?  Why didn't someone mention it to me?  It would have been a costly but do-able process. It could have happened over a summer.  I could have found some money somewhere, there are people at the U that take care of those things. 

For all those of you that will reply or think about how she can adopt or foster or snatch a cute baby from an abandoned stroller, she knows. She knows she has other options.  But that is not the point.  Trust me every single boy, of appropriate age stored Sperm.  Easy peasy.  No issue, not discussion of cost, deed was done and they moved on to injecting horrible poison into their body. Like many things, not so simple for girls.

Boy one bit of advice I would give everyone with a girl child would be to store some eggs when it is time. 

Just a thought for the day.

Rainy Day Contemplations

First, I hate to tell everyone, St. Patrick's day is not until tomorrow.  I don't care how much green you wear, how many parades you have, how many fun runs, it does not count!Okay that is off my chest.

Ss some of you might know I had an experience around Christmas that made me want to reach out to some new Cancer Kid families.  They were unfortunately introduced to Cancer World on Christmas Eve. 

I searched my brain and began to put some things in a bag.  I thought long and hard about what those items might be.  After two stints in intense Cancer World, several years apart it took a while.  I had learned a lot between treatments.  There is lots of "stuff" available at Seattle Children's but not always what you really need.  

We ended up spending lots more time inpatient the second time.  Months and months at a time.  Did I mention months and months and weeks and more fortnights.  So the gathering began.

1. A multi-useful bag.  As a parent you are always hauling around stuff.  Cloths, clean and dirty, stuff to go to the shower.  Extra stuff from the room.   A good bag is necessary.  

2. A china cup.  Months of paper cups are hard.  It feels so so institutionalized.  Nothing like that morning cup of coffee from Starbucks in something you can warm your hands on.  For a few nano seconds it is possible to pretend you are having a moment of peace and quiet at your own home.  Also I was moved by this passage years ago.
"Teresa has been given a cup of tea in the front hall of New Waterford General Hospital. The head nursing sister was the first to come across her. If it had been that nice young intern from away, the hysterical woman would have been given a shot in the vein instead of a cup of tea. The head nurse, however, has noticed whether they drink the tea or not, the mere act of reaching out to receive something that must not be spilled seems to have a profoundly calming effect on all but the downright insane." Fall on Your Knees by Ann-Marie Macdonald 

I also let the new families know there was instant hot water from the nurses and they had tea in the nutrition rooms for the families.

3. A Starbucks card to get the families started on their way to being Gold Club members.  Oh trust me during admissions food and drinks from Starbucks is a life saver given the lack on going lack of nutrition at Seattle Children's.

4. A small shaker of Cinnamon Sugar.  Cinnamon settles the stomach and helps when there is not food from the kitchen because they are closed and your child has been NPO all day because the procedures are backed-up. (Happens all the time.)

5.  A magazine.  During Cancer Treatment the most any parent can read is a page, with lots of pictures.  I think this is one reason bible scriptures are helpful. Short, and to the point.  Granted I did read House of Seven Gables and War and Peace but that was just because I am weird and it took me a long long time and I had started them before.

6. A bead. A small bead that will fit on to the parent ID badges, the necklaces we all wear to ward off evil spirits.  Cora Breuner took a bead off her own necklace and gave it to me during a very scary dark time.  I have handed several to moms in crisis.  I left one with my friend Elizabeth from NJ and with Carol whose daughter survived a transplant for lymphoma.  Some of the kids get beads of courage but the Mom's need them too.

7. A rock.

A stone, a little bit of something to grab on and place and focus on during some of those awful times during the process. The pain, the despair, the fear and the agony that is transplant and cancer treatment.  A stone. A special stone. One that shows a bit of interruption in life.  Not a big one. A little one. One that permeates everything in your life but still only a disruption.  This stone had a disruption but was able to keep it together and regain itself.

8.  A few pre-stamped note cards.  Pretty happy ones. Ones that can be used to thank all the people in the family's life for all they will have done for them.

9. A small warm fleece throw.  Hospitals have blankets but they are nasty and scratchy and smelly and need I go on?  Something soft and warm to gather around your shoulders at 2:00 am is a good thing.

10. A wind chime. Oh yes, the chime.  We didn't stumble on to these until our first night of our first month of Blue Thunder Jail.  Mary-Elizabeth had 6 various IV pumps, we shared a room with two other kids and their pumps.  One night the pumps alarmed every 15 to 20 minutes.  I still can hear the noise in my head.  I came unglued.  The next morning I went to City People's Hardware store and found the smallest, good sounding chime.  Not big, not noisy.  Pleasant tinkling was the goal.   We installed it and things got better.  I think the pumps were feeling unloved.  Our chimes were with us for the entire time of the Transplant.  They were placed for either maximum sunlight or pump duty.  They have been passed on to another patient that will be spending months in the hospital.

Then there is what ever. What ever strikes our fancy.  Maybe some nice cream or hair products. Some shower shoes, a list of places that deliver real food from the outside world.

I approached Seattle Children's Guild Association and this was their reply."

Hi Sally,

 

I hope you are doing well. I am sorry to be getting back to you nearly a month after we met.  It has taken me a while to reach out to different individuals to seek their input.

 

  We talked about the bags and the challenge with storage as well as the contents not necessarily being the right fit for all families.  We think it is a lovely and generous idea, but it is not something we are able to accept and distribute at this time.  I know that every item in the bag is meaningful to you, and for good reason based on everything you shared with me at our meeting.

 

I have reached out to other staff members at Karyn’s recommendation to seek ideas for items that would be most helpful to patient families should you be interested in changing direction of your support.  The response so far has been that food bags and gift cards are the greatest need – which is currently a project that we are doing called Operation Family Care (see attached flyers).   We would welcome your support of these efforts if you were so inclined.  You do not need to be a guild member to participate.

 

Regarding the Wishing Rock Guild, we haven’t processed your application or membership checks as we would need to determine a different project than your original intention. Should you desire to raise funds for the cancer program at Children’s, we can talk about different funds that may interest you in supporting.  

 

Is there a good time Melissa and I can call you and discuss other ideas?  I know you feel strongly about your bags and thus may not want to participate in any other efforts. If that is the case, we totally understand.

 

Thank you Sally.  Hope to hear from you.

 

Aileen Kelly

Executive Director | Guild Association

 

 

 

Not to be dissuaded we are going ahead.  I think Aileen is right.  This should not be a project for Seattle only there are other very deserving families in pain, not just here.

As the rain continues in that steady drippy sort of way that is so Seattle, I will start the foundation paperwork, Work on an agenda for our next meeting on Wednesday the 19th and carry on.  Seems like the right thing to do. Please contact me for more information.

Passages...

Some are dark and gloomy. Some are sudden. Some are full of light and wonder. Some are just so scary we cannot even begin to comprehend the importance of the event. 
Sometimes they slip by and we don't know they happened. 

I hate to plow through life and not notice.  Not pay attention to the important moments.  The person that needs a moment of your time to re-establish their grasp on their life.  The moment to listen and try and help.  We need this going both ways.


We lost such an important person today. Anne Lunceford, age 93.  She had been slowly winding down for awhile.  A long while.  She knew people and still was able to express herself but the spring was pretty weak for a long time.  She had been a part of my life since I was 13 years old.  Always a smile, always a willing moment. Always reading her bible quietly. Hair always the same.  

 

She is going to be so surprised when she is greeted by her last dog, Min Min.  No one had the heart to tell her Minnie had died.

 

She made a million cookies, said a million prayers, took in a million dogs and cats that were not her own.  There was always a calf in the corner of the kitchen that was wanting a special bit of extra care. She would never turn you away hungry. She would always take your forgotten paper to school. She would never be upset when Kelsie the Westie locked her out of the car. She would never not pick you up at 2:00 am at the train station.  She always gave you the best of everything. She gave the best she had to those she loved and she loved everyone.

 

The world is a smaller sadder place today than yesterday or even this morning.  If everyone did just one Grammy like thing.  It will end up being a grander place.

Intentions

We are all guilty of misunderstanding the intentions of other.  We read them through our own intention prism.  Sometimes the view is drastically altered depending on the overall ambiance of the moment.

We intend to be supportive but things get in the way and we are dealing with our own crisis and then there is the snow storm and a new project.  We intended to reach out and then the perfect moment passes and then the acceptable moment passes and then it is just too darn late and it is embarrassing and shameful and oh well.  We intended to reach out.  The other person or family might never know. Too late now and it is best to ignore the event ever even happened.  The best intentions are now a reason we don't see or communicate with someone we dearly loved. 

Sometimes it is a good idea to reach out AFTER the big moment.  The person reaching out feels better. The person touched once again by a friend will not be reminded of the unintended slight but be relieved things are fine.

For more than a year I have been "intending" to call.  I finally did.  It was a good thing.  You never know when it will be too late to call. 

Glimpses of NOrmal

I know I will never trust the universe in the same way.  I was speaking with someone today about my bad surgery karma.  Dad comes for surgery, he dies 2 weeks later. My knee is installed, MEB relapses.  Fool me once shame on you, fool me twice, Shame on Me. 

Yes I know it is a silly way to think but we are creatures that seek patterns and insight to make sense of the world we inhabit.  That's why we Cancer Mom's freak out so much when some little thing happens that is not "normal" in Cancer World. 

There is a secret, by invitation only, Facebook page for Cancer Moms.  There is true, raw gut wrenching stuff happening on that page.  Most times the moms are wondering if what is happening with their child is "normal".  They need to check in with each other about their worries.  No one ever suggests they are over reacting. 

"My child has a low fever and I am afraid to call the doctor because they think I am over protective."  The doctor that thinks she is over protective is not her kid's Oncologist.  He is her much loved but semi clued in hometown doctor.  It is frustrating for everyone. 

Speaking from experience, better safe than sorry.  It is never worth not making that call and finding yourself sitting in ICU with a child on life support.  Might seem extreme to many but it happens in Cancer World.  We all know the stories, the reality. The warm spot on the leg that is a blood clot and a 6 day stint in the hospital on high dose blood thinners.  The fear the clot might move and travel to the brain or the lung.  It is a call that needs to be made.

We live with a different normal and as Mom's we

need to not apologize for our worry.  We each had a kid with a weird, not to be worried about something.  "I thought it was just growing pains." " The earache would not clear up."  " I thought he was being lazy."  "The doctor just told her to go home and get some sleep."

We react the way we do because we have had a shocking, life changing event in our lives.  We have had the call, sometimes more than once.  "You have to come back to the hospital. Bring enough belongings for a two week stay."

Never ever apologize for your worry. Your concern.  When the kid calls from college and says:  " I am having some bleeding."  The right response is, call your doctor and do what she says.  Don't feel silly that she goes to the ER and they do some tests and some exploring and suggest some simple things.  Knowing it is nothing is worth the Co-Pay. 

Nothing is more normal when your Normal is in Cancer World.

Newest Study: Coffee is Good for You!

Oh, there are times I really need to know that I am doing things good for my health.  I hear about people stopping their consumption of Cafine and coffee and wonder what it would take for me to give up my hot strong, deeply satisfiying cup of coffee. More like a barrel if we are being clear.  Deep dark, sock knocking off strong. 

Today I will not worry about the things that might happen and figure out what I can do to change my universe today.

Time to make another pot of coffee.

Hitting Walls and Learning how to bounce back in a constructive way.

I have a million skills.  I think they are very apparent.  I don't seem to be able to convince anyone they have monetary value.  I don't know what they see when they see me, it might be too much lawyer stuff.  Maybe having been a lawyer is sort of like being a convicted sex criminal. No way to not have people view you as your former self.  Everyone thinks I want to be a lawyer.  I don't know how to convince them otherwise. 

People keep saying.... Just go back. Just return to private practice. You are good at it.  And Damn it all to hell.. I am or was. I have a great mind, a great sense of right and wrong.  I can conceive many to do many things they don't want to do.  Yes, you have to give up half or more of your life. Yes, your children will become hostile and difficult (they would have anyway but this will seem like it is all your spouse's fault and you can blame them).

They cannot see  that the lawyer part of me. The part that made me good at my job. The part that was able to make people feel better about what was happening to them is broken. It is gone. It is never coming back. Sort of like the glaciers.  There has been a fundamental profound, forever, global warming kind of death of a part of me.  If it ever came back it would not be the same.  The scars are too pervasive and deep. If I were a seasoned football player with a blown knee, no one would think twice about my walking away.  My lawyer bone is broke, smashed, demolished, vaporized, crushed, broken to pieces, busted up, fragmented, shattered, annihilated, decimated,

rubbed out, nuked, extinguished, run over by a herd of African Elephants, bowled over by 10,001 brides at a Vera Wang dress sell.  I am done. Are we clear?   

So, the journey continues.  Look here, talk to this person, meet with that person. Consider this option, revise the resume, again. Re-draft the cover letter, again. 

Some would suggest I am getting my comeuppance.  I should have stayed in teaching or let Mary-E be alone during those weeks and weeks in the hospital.  She is old enough, I spoiled her.   It could have happened that way.  I just listen and suggest they don't know what it is like to have the phone call, or in our case the calls. Only 13,500 of us in the USA every year receive such a call about our Children. .00004369% to guess.    It makes me crazy when I hear and sense those sentiments.

I have to walk away from the thoughts and the negativity.  I have found myself in this spot today.  I have to make a life from this point today.  I have to somehow show the people with positions I would like to have that I am no longer a lawyer with 25 years of litigation experience instead of a person with value that could add value to their organization, even though I am a lawyer.  

Some don't get it.... Tales from the Tri-Cities. Reallly School, you cann't help this child.

This was posted today by a mom.  Nicole has been mentioned here before. She had OsteoSarcoma and has had to have a bunch of surgeries and chemo and more chemo. She had to have a huge rod and a few screws taken out and an new one put in. There was bone grafting and lots and lots of painful stuff.  See, Cancer and Surgery and Chemo can kill a bone plate and then there is odd growing and can you imagine the sort of stuff a 11 now 13 year old has had to go through.  One of the bright parts to her day is school.  Just ask my daughter.

Nicole's mom posted this today:

It's Monday and I'm venting...along with everyone else! Nicole wanted to go to school today, so I sent her (she hasn't taken a "narcotic" since yesterday morning). They called and "wanted to make sure she's not on narcotics" (she's on a 504 plan for one and do they ask what "drugs" other kids are on?) This girls knows how to handle her pain meds and they don't make her "loopy" and no she only to...ok tylenol this morning! Then they said they didn't know she was coming and they didn't have a para educator on hand to help her in the wheel chair from classes...this girl is tough and can manage on her own but just might need some time! Should they question her wanting to go back to school after all she's been through! I have a few choice words for cancer and all that comes with it this morning.

Karen is much nicer than I am.  Here is a current picture of Nicole and some of the stuff that is going on in her leg. 

 

 

The WEb....

We are almost at a decade of time in Cancer World. Time of lost innocence and so many other things.  It has been a long time.  I realized I am profoundly changed by the experience.  Changed in the same way as going to law school. 

I was talking with someone about some job prospects and realized I no longer take my identity from what I do in a work location. (Unless it might be as a parent liaison at Seattle Children's.) 

We have been here too long.  I have become one of those institutional person's with such a changed view of the world I can't see it any other way again.  Let me out of prison and I still there.

I don't think it has helped that the web connects us in so many ways.  Facebook, Caring Bridge, and the many other sites.  Sites within sites. There are Facebook pages for moms and cancer moms and bone marrow pages and angel pages and.... With each new person I encounter there is a new flaring of the experience. 

It rolls around in us all the time. We are walking time bombs.  We are out in this vast ocean trying to make sense of all we see.  Sort of like the WWII guys that never talked about what they saw.

We connect, we kvetch, we give hope, we explain how to live with no hope, we encourage, we listen, we don't listen, we confer, we keep our fears close to our hearts. We recognize a good situation and know a bad one when we see it.  We try to say the right things and then hope we did.  We fix a lot of tea for each other, or coffee or margaritas...

Yesterday I read a post by a mom whose little girl died about 6 months ago.  Terrible battle. Terrible loss. Three years old. Mom is in so much pain. She feels the docs did not listen, that enough was not done, that she could have done something different.  Her pain is so so close to the surface. She reaches out every now an then when her heart is breaking and her pain is flowing out like lava.

There is no way to help her. A few words. A few moments of thought for her. A few____.  Who knows.  It sometimes is okay to say a few things and make an open hearted gesture but there is no way to really take away pain from another.  We all have to live with our pain and try to make it a positive part of our being. I think it is something we can do but that is what takes time. The pain never ever is gone.  It is transformed. Sort of like a bullet being absorbed by bone.  It is there. You can feel it, you learn to live with it.

So the web brings us the news, the good, the bad, the unsure.  I am still out on whether or not it is a good thing. I do know it helps to pass on the good and the bad.  The happy and the sad. It helps to know you aren't alone. 

Maybe the web is a good thing. 

Here is a picture of the sweet loved child I was talking about.  Meet Yen..

Letter to Mary-Elizabeth, via Ralph Waldo Emerson

Finish every day and be done with it.
You have done what you could.
some blunders and absurdities
no doubt have crept in;
forget them as soon as you can.
Tomorrow is a new day;
begin it well and serenely
and with too high a spirit
to be cumbered with
your old nonsense.

This day is all that is
good and

fair.
It is too dear,
with its hopes and invitations,
to waist a moment on yesterdays.

How can we not love this advice.

I am feeling like the local Beaver

I try to take the dogs somewhere everyday.  I figure it is the best thing I can do for both of us as I look for a job that will take me away from them.  So during my recent ventures I went to a place in Seattle called Golden Gardens.  It is about two miles from here, a park along the sound.  I am sure if we could review history tapes we would see this bit of land was created as a result of a big landslide when the hill gave way.  

They did  some work a few years ago and created some wetland ponds.  The water from the park is full of fresh water.  There are ducks, and other water fowl.  Pretty interesting group. 

Well the other day I was going down to the beach with the dogs and a tree was down over the path.

 

I was pretty impressed and thought someone had done this. Then I looked and realized it was a beavery. I looked around and saw the beaver has been very busy.

 

I did some reading and they will take down any size tree.  No matter the size. I looked and found this 

 

Proof of great industry.  This animal takes dirt, leaves and sticks and builds a home.  A home that is cozy, perfect for his family. 

 

When Meb was in the Hospital we did the same thing.  Took bits and pieces and tried to make a home away from home.  We had endless uses for BioHazard Bags.  They hold a whole piece of cheese cake with room to spare. 

 

Gathering familiar things around you during times of stress is a necessary survival skill.  We always had things we kept in the car for the very purpose when we were close to the hospital. Many of those items are in the bags we are putting together for the new families with Cancer Kids.  

 

Spent some time with Nicole and her dad yesterday.  Love them.  Nicole with hair, they wonder the hallways looking for those of their kind.  They are like we are, they can spot a kid with cancer and a suffering parent a mile away.  We will enjoy having them part of the efforts to help everyone in cancer world have a bit of home and comfort with them. 

 

  

Musical Offering by Bach

I mentioned the other day that I read odd books.  Someone asked how they come to me.  I am not too sure but they seems to sit around and wait even after I leave them in a corner for a while.

I realized most have some tangential historical background or are totally unusual sort of topic. Most books that I read head me on an adventure and some new bit of knowledge is squeezed out.  A word, a  concept, a vague reference to some sort of event.  I often stop to "look up" (pre-google term) what ever peeks my interest. 

This time it was the Royal Theme.  Those of you who have forgotten your Prussian history from the mid-18th century, Fredrick the Great commanded JS.Bach to his court to perform.  Bach was at the end of his life and Fredrick was in the middle of his.  Fredrick loved music and art and Voltaire.  (His father collected Giants but he let them loose). So one night after two days in a carriage, he handed Bach a line of music. Bach was known for his ability to do improvisations from a given theme.  This piece was very difficult and complicated but Bach managed to produce a Fugue  (another word for round sort of like Row Row Row Your Boat).  When asked to do six lines he said he was too tired. 

He went home and then produced what was called the Musical Offering.  A long piece of music based on the theme full of fugues and cannons and other such musical offerings.  All the music stuff always confuses me but I found something that really makes sense.  A moving picture of how the fugue works.  http://www.youtube.com/watch?v=KYouXtuk0T8  It is worth watching.


So I think I have my mom's endless curiosity.  I think it keeps us young if like Bach we take the notes that are given to us and make beautiful music out of it.   Even when we have been in the carriage way too long and we are tired in ways we never knew were possible.

 (Evening in the Palace of Reason, James R. Gaines. )

East Side Adventures

"I am certain of nothing but the holiness of the Heart's affections and the truth of the Imagination." -- John Keats

---

"WILD GEESE"
by Mary Oliver

"Tell me about your despair, yours, and I will tell you mine..."

---

---

You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting --
over and over announcing your place
in the family of things.



This poem was read at Sallie Sear's service.  A lovely lovely poem.  Mary Oliver is rapidly becoming one of my favorite poets.  (yes I am a total geek.)  What really stuck me about this was the fact Tucker and I spend some time with the geese on the Spokane River. 

It was a quiet time.  We walked, we watched, we saw them land, heard the big swoosh.  It was a wonderful moment.

Mary-Elizabeth was so quiet during the service.  I used inappropriate humor, my daughter just wept.  She loved Sallie in a very real way.  I think she knew how hard it was for Sallie to gather the energy to take her to her appointments but Sallie "soldered" on with no complaint.  I had to scold the both of them about the after appointment shopping. 

Mary-E is doing great.  Good schedule, she handles her classes with structured deliberation.  She has a tutor and seeks lots of help. She works so hard at working hard.  She did refuse to show me any Zumba moves but then who is surprised by that.

Spokane was filled with snow but when driving with those that know how to drive in snow the ability to join them returned.  I was all over town, going up and down hills and even stopping.  Everyone should be proud.  No one was proud.  It was expected. 

I spoke too Soon.....

• Sallie Sears was the much much younger sister of a dear friend Debbie Sears. (ends up being 2 years).  She was always the little sister that hung around the "big" kids.
• At some point in the past 10 years with the advent of facebook becoming cool, we re-connected.  Sallie reached out and I reached back.
• We had been ships in the night and had spent time in the same city, never quiet seeing each other.  She returned to North Idaho and Spokane and worked at Sacred Heart in the pediatric cancer floor and was an advanced nurse practitioner.  She was a great friend of Dr. Flemehagen, Meb's Spokane doctor.

She came from this family of doers.  They didn't seem to have to work too hard at it they just did the right kind thing.  Kind works, kind deeds, kind suggestions.  They were just this wonderful family of people.  Everyone of my generation has a Chuck and Lorna Story.  We will have ample time to share them at Sallie's service.  

Sallie was a part of the trunk from the Sears Tree.  She sent Mary-Elizabeth a waiver for application fee for Gonzaga. She helped me connect to medical professionals in Spokane. She took Mary-E to appointments and shopping and just was there for her in a way few could be.  Sallie had lupus.  She understood hard and frustrating and prednisone and lose of trust in your body.  She knew and understood what ME went through. 

She really did what she could to enjoy her life in every way possible.  She did not shy away from the things that "could" be a problem.  She traveled and explored and sought warmth.  It was all a good thing.

She cared in any way she could.  When I mentioned the Wishing Rock Guild, she sent me Starbucks gift cards for the bags.  Just one example.  She always did what she could.

There is an empty place in the physical universe right now.  Maybe what happens when someone like Sallie leaves we all step up a bit to fill the void. 

Her final gift will be to gather many together for her service.  We will tell stories and remember and laugh and cry.  We will be sad she is gone. Glad she is not suffering. We will be selfish about her loss.  We will think about what we will do to replace the void.  We will peer into the future and know it is not the same sort of place it would have been with her gone.

Strangely Quiet on the Eastern Front

Lots of nothing.  No job interviews. No current prospects.  Nothing.  Quiet, unless of course you head to Seattle's China Town.  Then there are dragons, fireworks and dragons and red packets of little bits of money.  Lunar New Year, the year of the Horse. 

Oh dear, I think I just realized the Broncos are a horse.  This could be a bad thing.  I am already in trouble for failing to be excited about the big game.  I am going to work on trying to get up some enthusiasm for this upcoming event.  

Go Hawks.