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.