Something to strive for

another day

I spent some time on the phone yesterday with people at Johns Hopkins trying to figure out what the plan is and when I am going to have surgery.  One of the things I learned last week when we were there, was that there are sinuses sort of behind my forehead bones.  I am sure there is a correct term for it.  Anyway, these sinuses are not "clean" and it would not be a good thing for my brain to come into contact with the sinuses. 

My tumor appears, in the MRI images, to be very close to the sinuses.  Dr Brem said he couldn't tell if there would be a possibility of accidentally opening the sinuses, or if there is a possibility that the tumor has already gone through into the sinuses. 

So, I am getting a CT scan on Thursday this week and an appointment with Dr. Ishii, a specialist in ear nose and throat (and sinus stuff).  Dr Ishii will determine if he will need to participate in the surgery with Dr Brem.

So, it is getting closer.  Thank goodness.   I guess.

One of my friends from church called me the other day to offer advice on taking advantage of the pastoral care services that the church offers.  I think she must think I am on death's door.  She told me how she looked in on another member of our church every day up to the day she died.  Swell.  Just what I want to hear!

It occurred to me that the friends in our dinner group (we know them from church) all know I have a brain tumor, but that's all.  So last evening I wrote an email to them all explaining what kind of tumor I have, and that it may take time, but I will be alright eventually.  I told them not to take out their black suits and dresses just yet!

Monday April 28, 2014

I am having a rotten morning.  No, nothing in my life is bad per say.  Nobody has done anything to upset me.  The things I obsess about, clean house, laundry, yard work.  None of those are bothering me.  Just my head.

Woke up with a screaming headache.  The doctor said that it is common for morning to be the worst as far as headaches.  That has been pretty much true.  But once I am up, have breakfast and move around a bit I feel more human.  This morning is just hurts.  I have been up, eaten, taken drugs, had a shower.   Still in pain.  And very tearful.   I don't cry often or easy, but this morning is different.  A reality day maybe.  Maybe I am starting to admit and accept that I really have a fucking brain tumor.

I think about my kids.  All of them.  Each one.  Who they are.  What they were like when I first met them as newborns and how, without any thoughts of how, the depth of my love, when we met for the first time was so much.  Much more than anyone could have explained to me.  They were all different, each one.   And all unique.  And wonderful.  I would throw my life in front of anything that could harm them.

They all have their own lives now.  They are each unique and oh so individual and wonderful.   I am not ready to leave them yet.  I don't want to be their past.  I want to be their present for a long time to come.

I often say I am not really afraid of death.   I don't really think I am.  Thing is, I am in love with life and not ready to let go yet.  There are too many sunsets and full moons and hot days with nasty bug bites.   So many hugs and kisses.   Scents and sounds and sights.   I am really confident I will get through this whole brain tumor surgery.  It may take a while, but I will recover and live to complain again.   But the reality is, each illness, broken bone, surgery.  Each day lived, is a day closer to not living.  That is just truth.  That is life.  That is why life is so precious and precarious.   That is why we believe in the tooth fairy and Santa Clause.   To postpone the stark realities of life- that we really have very little control, no matter how much we think we do.   This is why religion is so powerful.  It gives meaning to this life.

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I just got off the phone. Had a good cry to my sister and I feel better.  Not too great physically, but, emotionally.  I can do this.  I will make it! 
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I am getting real tired of headaches!

Yesterday I actually didn't feel too bad.  I thought, maybe I don't really have a brain tumor.  Maybe it was all a mistake.  I think, maybe part of why I was feeling better was that I can see an end in sight.  Well a new beginning anyway.  An end to the tumor (fingers crossed), but a new beginning with a shaved and stapled head.  Recovering.  Maybe re-learning some things.  Probably not.  Gaining a new perspective.  Being a survivor.

I thought living through childhood and childbirth and my 50s made me enough of a survivor.  Nope, my brain had a different agenda.  I didn't have anything to do with this new situation/ transition.  Lessons learned I guess.  Never think you know it all or you will get knocked on your ass by something you don't expect at all.   No, I am not saying that I am a know it all.  I am saying that I was feeling like this turning 60 thing was going to be great!  I was really working hard at getting fit.  My energy has been low, but I have been attributing that to my thyroid.  Well, dear thyroid, I got it wrong, partly at least.  My thyroid was/ is low, but I suspect that the greater energy drain was more of a "brain drain".  Pain really eats your energy big time.

Today was not so easy.  When I woke up, I decided that I have changed my mind.  I don't want to have my head cut open.  I don't really have anything wrong.  Nothing a good nap won't fix.  Ha ha, can't fool the old noggin though.  Tumor is still there.  Yup.

It was a nice day out today.  I had workers in the yard.  Family and dogs on the deck.  Then more family in the family room.  After a while, when my head was feeling that vice grip it gets, I told everyone that they had to go home.  I know that they all understood why.  I know that they were okay with it.  At least I hope that they did. I felt so rude, as soon as I opened my mouth.  But I was in pain and exhausted and done.  Just done.   I know everyone is worried and I know that I am loved.  I am super sure of that.  But I need to get better.

I have my advocates; my sister and my husband.  I have always been a pretty good advocate for myself.  But right now, I am not really myself.  I am not my own person.  I am partly my family's, I belong to my friends and my children.  By "belong to", I mean, they are all dealing with their own lives and now this tumor had jumped in front of them shouting "Nancy Nancy Nancy" and they worry and are sad because it is so scary and uncertain and dangerous.   And we all wear a brave face.  And everyone says "let me know if there's anything I can do".  And they mean it.  But there is not a whole lot anyone can do.  Nick cooks and he and Austin know how to clean.  I think having company will be nice while I am recovering.  I hope it will be.

Johns Hopkins

This is what I wrote to my kids and my friends.   I currently have a splitting headache and am tired.  What else is new?


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What a long day it has been! We left home at about 11:30 this morning and
got home at about 7:30 this evening.

Nick and my sister, Carol went with me to Baltimore. We signed in and then
we waited for a bit. Had my vital signs taken. Waited some more. Then we
went back to the exam room and met with Dr Brem's nurse. Dr Brem is the
neurosurgeon. The nurse spent a lot of time explaining things and having me
do some tasks to check for balance and strength and whatever else they are
looking for. One thing I learned is that I would never pass a police
sobriety test- I cannot walk a straight line heal to toe for the life of me!

I signed a bunch of papers giving consent to operate and to use blood and
blood products if needed. I was sent home with a big packet of
information and instructions, including some shampoo! (I am to shampoo my
hair a day before the surgery).

So,I will know either tomorrow or Monday at the latest when my surgery will
be. Dr Brem only does surgery on Monday and Tuesday. It will probably be
in two or so weeks. Maybe sooner.

The doctor said I should stop taking the Percocet because it is not a good
idea to take a lot of narcotics. He said I should try extra strength
Tylenol, which I did about an hour ago and it has not helped at all!

After all the hospital stuff was done, we stopped at a nice restaurant and
had dinner. We had not had any lunch, so we were all starving. I am afraid
I ate to much because my stomached is not happy!

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What really matters?

Looking on the bright side

"Always look at the bright side of life"

I am practicing here before going down the big cliff

 These are some of my favorite pictures of myself.  I was on a camping trip in Margaret River, Western Australia with a group of women friends.

Abseiling (rappelling) down a cliff with the Indian Ocean over my shoulder was an unforgettable experience. I was afraid, but once I stepped off the top and started to go down, I was exhilarated.

You probably can't tell, but I had a messed up elbow and my right hand was broken (that's why I am leading with my left- I am naturally right handed). I had gone over the handlebars of a  bicycle a week or so before the camping trip and banged myself up.

This is life.  Being scared.  Doing the thing you are scared of.  Coming out of it having learned something about yourself and your strength that you never could have imagined.  Life is a trip!

 

MONTY PYTHON

Always Look On The Bright Side Of Life Lyrics
 From the life of Brian:

Some things in life are bad
They can really make you mad
Other things just make you swear and curse
When you're chewing on life's gristle
Don't grumble, give a whistle
And this'll help things turn out for the best

And always look on the bright side of life
Always look on the light side of life

If life seems jolly rotten
There's something you've forgotten
And that's to laugh and smile and dance and sing
When you're feeling in the dumps
Don't be silly chumps
Just purse your lips and whistle, that's the thing

And always look on the bright side of life
Come on!
Always look on the right side of life

For life is quite absurd
And death's the final word
You must always face the curtain with a bow
Forget about your sin
Give the audience a grin
Enjoy it, it's your last chance anyhow

So, always look on the bright side of death
A-just before you draw your terminal breath

Life's a piece of shit
When you look at it
Life's a laugh and death's a joke, it's true
You'll see it's all a show
Keep 'em laughing as you go
Just remember that the last laugh is on you

And always look on the bright side of life
Always look on the right side of life

C'mon Brian, cheer up!

Always look on the bright side of life
Always look on the bright side of life

Worse things happen at sea, you know
Always look on the bright side of life

I mean, what have you got to lose
You know, you come from nothing, you're going back to nothing
What have you lost? Nothing!

Always look on the right side of life...

Nothing will come from nothing, you know what they say?
Cheer up you old bugger, c'mon give us a grin!
There you are, see, it's the end of the film
Incidentally, this record is available in the foyer
Some of us have to got live as well, you know
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