Tuesday, April 29, 2014

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

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.

-----------------------------------------------------

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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Saturday, April 26, 2014

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.


Thursday, April 24, 2014

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?


**********************************

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!

*************************************

Sunday, April 20, 2014

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
>

Saturday, April 19, 2014

What is "old"?

I have spent much of this last year thinking about the fact that I am rapidly approaching my 60th birthday.  What does that mean?  It sounds like a milestone.   Something to achieve, but what?   I have been trying to get "fit" as I get closer to that birthday called "60".  Why?   I think I am afraid of getting "old". I have not really thought about how I define that age, or the word old.  It just seems to be something to stay ahead of somehow.

Somewhere, in the far reaches of my mind, old is frightening.  Old is being disabled and unable to keep up.  Getting left behind.  Being forgotten somehow.   I'm not sure if I am saying it right.

My mother had a stroke that left her permanently disabled at 61 (or was it 62?).  Anyway, I am afraid of that, I think.  She suddenly went from being a very active woman into being an invalid.    Look at that word:  "invalid"- not valid.  That is so sad.  That is so much what I do not want.  I am not ready.  I don't know that anyone is ready, or if they are, how do they know?

I while ago I wrote on this log about my "bucket list".  Who knew at that time that I had a tumor in my brain?  Not me.   I was writing, cavalierly about all of the places I want to go and things I want to see.   No thoughts of mortality. Really there weren't.   I mean, I know that I am going to die.  And when I do, that's that.  Done.  Shop closed.  Bye bye.  All over.      But on some level, I was glib.  Not really deeply thinking about mortality.

I have dealt with mortality as much as the next guy.  People die.  People you love die.  Young people die.  Old people die.  Even babies die.  I have grieved and mourned.  I have held the hand of my mother as she died.   I have kissed the cheek and patted the hands of friends who are not alive any more.  I know these things.  I know I too will die. But somehow it is still an abstract notion.  It is the destination.  And nobody really knows why. Or to where.  If anywhere at all.

“Life is a journey, not a destination.”

Ralph Waldo Emerson
What did Emerson know? What did he mean?   Why did he say that?   Ralph Waldo Emerson died just shortly before he turned 79.  Did he feel old?  I wonder when he started to feel old.  Was it at a certain numerical age or a mental/ psychological/ cultural age?  Or did he ever "feel" old? I have read that in his final years. Emerson was unable to conjure up the words and ideas that he wanted to express, and was quite embarrassed by that.  So, I guess he did feel old.  
And so, in comes my brain tumor.  How old is it?  How long has it been there sharing life with me?  I know that children, even babies, get brain tumors, so this is not what is going to make me old .  But I suspect it is aging me.  Making me think about the things I am writing right now.

Is "old" such a bad thing to be after all?   As we so often joke "it's better than the alternative",of course, with the subtext that the alternative is death.  Yup.

If you ask anyone, your own children included, "am I old?", the answer will almost always be "no", unless of course you ask a young child who doesn't yet understand that being old is taboo.

And so, for today, I am not old yet.  I guess.  I am 59.  In two weeks I will be 60. I have a brain tumor.  My head hurts.  My body aches.  I am not a grandmother. Maybe that's why I am not old.  Nah?   

I am energetic (well not as much as I would like, but this goddamn tumor has to answer for that).  I see the wonder in the world around me.  I am loved.  I love.   I see goodness.  I try to work toward helping others find goodness and peace.  That's who I am.
Here are some quotes I stole from a web site:
 Bernard Baruch
To me old age is always fifteen years older than I am.

William Butler Yeats
From our birthday, until we die, is but the winking of an eye.

Joan Rivers
Looking fifty is great… if you're sixty.

Mark Twain
When I was younger, I could remember anything, whether it happened or not.

Lord Hood
Some people reach the age of sixty before others.

John Dryden
What, start at this! when sixty years have spread
Their grey experience o'er thy hoary head?
Is this the all observing age could gain?
Or hast thou known the worl so long in vain?

Pablo Picasso
One starts to get young at the age of sixty and then it is too late.

Tom Stoppard
Age is a high price to pay for maturity.

Euripides
If we could be twice young and twice old we could correct all our mistakes.

Thursday, April 17, 2014

Grumpy morning

This morning we were woken up by a junk phone call.  Clearly the guy had an Indian accent, and from the background noise I could tell he was in a call center.  I handed the phone to Nick.  Nick told the guy that the call was being recorded, and the guy hung up!

And my head was hurting.  Why did I have to wake up from a pain free sleep to a banging killer headache.  I was feeling pretty crummy, and very pissed off.

How is it that I have a brain tumor?  I mean, really?  REALLY?  This was not on my agenda at all.  Of course it could be worse.  There''s always someone with worse problems.  Yada yada yada.  Yes I know that.  I have lived all over the world.  I have seen it.  Life really sucks for a lot of people.  I wish I could fix it.  I do.  But right now I am feeling selfish and wishing I could just fix myself.

This morning I sat out on the deck with my eyes closed and the sun shining in my face.  I was not wearing a jacket, and it was a little cold.  But it felt good.  As I have expressed before, that pain at least means you are alive.  I guess cold does too.  I mean, if I was not cold sitting in 40+ degrees, I would be dead.  Or at least, not have any feelings or sensitivity.  Or something.

So, I sat there with the sun shining through my eyelids, shivering a bit and thinking that I would open my eyes and this whole thing would turn out to have been a really sucky dream.  I know better.  It's like wishing for the tooth fairy.   I want a tumor fairy.  I was going to write that I want to go back to being a little kid and being taken care of.  But that would not be true really.   My childhood was not full of magic and dreams come true.   And there is  no happily ever after.  At least there isn't any happier any better than my life has turned out so far- which is pretty good.

I wonder what is going to happen?  Next week when I see the doctor, what is he going to say?   When am I going to have surgery?  Am I going to have surgery?  Should I be scared?   How much "better" can I get after all is said and done?

Took Percocet at 11:00.  Head still hurts, but not as bad as without the drugs.

I didn't take a shower yesterday, but rather stayed in my pajamas all day.  It was something I needed to do.  Today I need to take a shower and get dresses so I can feel human again!

Wednesday, April 16, 2014

Howling at the moon

I was just outside admiring the full moon.  I would love to howl at this beautiful, big, bright moon.  But I can only think about it.  Living in the suburbs means that howling  like a wild animal would not please the neighbors! 

There was an eclipse a couple of nights ago that was supposed to be pretty spectacular.  We weren't able to see it because it was too cloudy.  Also, the best time for viewing the eclipse was 3:00 in the morning.  I do tend to stay up too late, but that's too late, even for me.

When I got up this morning, there was ice on the deck.  By this afternoon the sun had melted and dried up all the ice.  It was cold out, but not too cold to sit outside for a while.

Carol and her dogs came over and spent the day here.  The dogs, Daisy, Mickey and Buddy, had a good time together.    It was nice to just hang out, talking, watching TV.  Being sisters. 

Funny to think about sisters.  We are watching My Man Godfrey- a big part of the theme seems to be the sibling rivalry between two sisters.   I don't think I have seen it before, but it is a classic 1930s movie.  With all the fast talking chatter.   It is one of those movies where you have to really pay attention to.  A lot of double talk that reminds me a lot of the Marx brothers.    That reminds me, Groucho Marx died the same week as Elvis Presley.  We were living in Bangkok at the time. 

I know I am rambling, but it feels good. 

Yes, my head has been bothering me today, as it does every day.  My jaw has been hurting for a couple weeks.  I have been thinking that it was hurting from having my teeth cleaned a few weeks ago.  Now though, I am thinking that it is probably related to my tumor.  Well, we'll see.


Tuesday, April 15, 2014

Tuesday

Tuesday.  Another afternoon with the moms and babies at Starbucks.   Took some Percocet this morning and meant to carry some with me in case I needed it, but I forgot it and I did fine.   My energy, and head pain are so confounding.  One minute I feel fine and energetic. The next, my head decides it has had enough peace and quiet and starts to hurt and sucks my energy away.  Life.  With a tumor in the brain.  Yup.

I can't not write about it.  It is my full time obsession.  I guess it will be for a while.  Maybe even the rest of my life.

I get upset and worn down and I cry some.  But I am still just me.  Slower and easier to tire right now.  But not freaking out (too much!).

The weather (something people are always all too happy to talk about), has been very strange.  On the weekend, it went up into the 80s,  Right now it is just above freezing!  We actually had sleet on the deck a while ago.

Oh yeah, I just remembered, I had a weird dream- I guess all dreams are really weird if you think about it.  Anyway, in my dream, I was hanging out with Queen Elizabeth.     She had granola bars in her purse.   She was driving her Rolls and we (yes I was in the car with her) were racing all over London, driving really fast and laughing at how much fun we were having.  Yeah, right!  Weird!  The night before, in my dream, Marielle Hemingway was telling me what to eat and drink to make my brain tumor go away.   That's not quite so strange.  Marielle was married to our best man.  I have met her.  She is into health food.  Whatever.

I have an appointment at Johns Hopkins next week with Dr Brem.  Carol looked him up, and she said he is really good.   See, why should I worry when I have so many people to do it for me?

Lots of friends are asking how they can help, what they can do for me.   I don't know, really.   I have Nick and Carol.  They can both help me get to wherever I need to go.  They are both pretty good cooks and know what I like.  I think the biggest thing for me is just to have company  People who will just come and sit and tell me how their life is going.   Stuff like that.  That's what feeds my soul.  People. 




These both speak to me

Monday, April 14, 2014

Monday

I feel like I am getting worse.   I don't know if the tumor is growing, or if I am just losing my resiliency or what.  The pain has been feeling stronger than before.  I am feeling nauseated more though I have not thrown up since the other day.

Been on the phone confirming appointments, cancelling other appointments and trying to get things moving.  Dropped out of attending my women's group this evening. I just can't. 

I still feel confident I am going to get better in the long run.  But getting there is a challenge.  It could be worse.  I might get worse before I start recovering.   It just plain old sucks.

At one point, earlier on in the tumor journey, I had thought about writing a letter to each of my kids.  I should say, I mean, I thought about writing individual letters to each of them telling them each, as individuals, how special they are and how wonderful they have turned out.  That they are wonderful adults.  They are all pieces of art and sources of much joy.   Only a parent can understand the depth of these feelings.  The people, children, adults, started out as a promise.  As love and hope shared between the two people who parented them.   I want them all to know that.

I do not want my children to think that they are anything less than amazing miracles.   I don't want them to grow older with guilt or regrets for what they have done, are doing or might do.   

Oh geeze, this sounds like a "good bye".  It is not.  It is just where my mind is taking me.  

Nick and I started out as a couple of dumb kids who thought we owned the world.  Well, we have been less than perfect, god knows.  We have regrets and sorrows and joys as well.   I think we lucked into having such cool kids.   Honestly. who knew?  I cannot speak for Nick, but I know that I wanted to have babies.   To birth them and nurse them and cuddle them and raise them.  The raising them- into adulthood really was not a concept that I grasped.  I just wanted the pregnant and nursing part.  I couldn't think past that when they were born.  Boy was I in for the ride of a lifetime!   ( sometimes, I think we are still a couple of dumb, albeit old, kids)

I am sure it annoys them that I still see them as my babies.   It is not because I do not acknowledge that they are adults.   Not at all.   It is because I was the  first person to know them and feed them and love them unconditionally.  Of course Nick's feelings are pretty intense too- I just cannot write his words and feelngs, only my own.

Each one of our kids grew inside of me.  Was a part of me.  Was nourished, first by my body from inside the womb and then at the breast.  When they were nursing, we were one again.  An inseparable unit.   I miss that, but I also treasure that time and know that it is gone.  And I feel lucky

if I am being repetitious, let's blame the tumor!

Sunday, April 13, 2014

And on today's menu we have brain tumor with a dash of sunshine

It is a beautiful, sunny day out.  I need to get out and enjoy this day.  Too soon it will start getting hot and all of the bugs, at least the ones that bite, will be trying, unsuccessfully, to perform liposuction on me.   They bite, and instead of me getting thinner when they suck my blood, I swell up.   Isn't life strange?  I know, I have said that before.  Well, I am allowed to repeat myself.  I have a brain tumor.  Ha.  Top that!

No, not really, don't top that.  Don't get a brain tumor.  As if there's a choice.  Not a choice I would have made!  I was shooting for getting fit and healthy as my gift to myself for my 60th birthday.  Man, did I ever work hard.  I was at the gym 6 days a week most weeks.  Spin class was finally becoming bearable (made my bottom hurt at first), Pilates, please, I would never have been able to master all of those moves, but I was there and I was trying so hard.  Seeing my trainer (hi Neil!).  

Yesterday, I decided to do some work on the yard.  Not a whole lot, nothing too strenuous.  I decided to cut down the two patches of ornamental grass- the dead bits, so the green would look good when it starts coming in.   I only filled one lawn bag with clippings, and I am sore now.  I am also a little bit pissed off.  I don't want to be sore from doing something so small.  I had no idea I would start losing my muscle tone so fast.  Now I know.

I think about going in to the gym and just doing the elliptical, but my head hurts too much and I might end up making myself sick.

When I got up yesterday, my head hurt so much I felt like the top was going to pop off.   I went downstairs to let Buddy out and then I ran to the bathroom to throw up.   Nothing really came up, but I kept at it for a while.   What an awful feeling.  And poor Buddy was left outside crying and feeling abandoned.

As the day went on, Carol came over and watched TV with me.  It helped.  I also took some medicine.  I do wonder if I was sick from taking too many different medications at the same time.  I am not planning to find out!

I spent this morning scanning pictures of the World Walk for Breastfeeding 1994.   What fun!   Twenty years, gone just like that!

On the steps of the Lincoln Memorial
Chance and Nancy    



There are so many people I recognition.  Some I can put names to, others have familiar faces, but their names escape me.

Ok, Percocet is on my menu.  Haven't had any today and I think I need some now.

Friday, April 11, 2014

so tired

The weather was wonderful today!   Carol came over with her dogs.  Buddy was thrilled to have his "cousins" here to play.

I really didn't/ couldn't do a whole lot today.  Too much headache and not enough relief.

It's funny, when I lie down to go to sleep at night, my head doesn't hurt a whole lot.  Or if it does, it is short lived.  I sleep all night- unless the dog barks!

But in the morning; when I sit on the edge to get up, BAM it hits fast and strong

I have taken some medicine,  So I think I need to get to bed

Can't wait to see what Tomorrow's like!

Thursday, April 10, 2014

Brain Tumors Suck!

I think if this blog is read chronologically you could see how my attitude is going downhill since I started having these tumor related headaches.   Not too surprising.

Life is good.  Really it is.  It's just hard (and self centered) to see past the pain right now.  The pain is not so bad that it stops me in my tracks.  No, nothing like that.  It is more the constancy and persistence that is wearing me down.

Was woken up by a phone call from an unidentified caller who wasn't even there. After getting up and going out and letting the dog out (yada yada yada) I had my coffee and oatmeal and watched the Today Show.  My head was hurting.  I decided to lie down.  Then I decided to come upstairs, where I am now.   I thought I would lie down and nap.  But, instead I am here.

I took a Percocet before coming upstairs.   I have decided not to be afraid of pain pills.  At least for now.  Until my tumor leaves the building.  I guess the medicine has taken the edge off a bit.

I am thinking about sewing a dress that I cut out over a month ago.   Queen of unfinished projects, that's me.   I think that playing some music and sewing will make me feel better.   Taking a shower and getting dressed will help.  Now to conjure up the energy to do anything more than just sit here, in this chair.

It is a beautiful day today.  After I get dressed I am going to sit outside and close my eyes and enjoy the feeling of the sun on my face.  That I will do.  The rest, like sewing?  Maybe, maybe not.  We'll see.

Sitting here, in my study/ sewing room, I lean back and shut my eyes.   I feel like I am hallucinating.  Not the dizzy out of control kind.  Just the - words?  what words are there?   Just a nice feeling.   Colors, mainly red, coming through my closed eyelids.  And I am so tired.

I do love my life.  Just not this particular chapter.   Gonna get through this, and then look out world!

Wednesday, April 9, 2014

Same stuff, new day

That about sums it up. Another doctor's appointment today.  Still have a headache. Still have a tumor.  What else is new?

Actually, this was my first visit to a neurologist.  Nick and Carol both went with me, which means they both heard what was said.  Which is a good thing.

I went to a neurologist because that's who you see for pain management.   I learned that the pain is from the tumor (Yup, I knew it).   As such, there is nothing short of removing it that will make the pain go away.   He wrote me a prescription for some kind of pain medication- I haven't filled it yet.   I voiced my concern about becoming addicted to these narcotics and was assured that I won't.  I am not taking them to get high.   I am taking them to be at least reasonably comfortable.



The doc said that since it is clear that the pain is caused by the tumor and not incidental, it is what he called an "emergent" situation that needs to be addressed sooner rather than later.

I faxed paperwork to Hopkins and they should contact me in a few days with appointment information.  Then we take it from there.

I wrote to my Google group email list telling them about my brain tumor.  These are moms I have met trough La Leche League.  I send parenting and breastfeeding emails pretty much every day.  I have received a bunch of short emails back telling me how much help I was when they were having breastfeeding problems.  What a great group of moms and babies!

Yesterday, at Starbucks, at the Breastfeeding Cafe' two little 8 month old little girls were having a sweet conversation with each other.  They were each being held on their own mother's laps and they were just gabbing and gabbing away at each other.  They had elaborate hand gestures to go with the stories they were telling.  I wish I had my video camera with me, it was so precious!  Makes me smile just to think about those little ones.

Ok, this tired head must go to bed.

Nite nite

Tuesday, April 8, 2014

Time

Just a quickie tonight before I go to bed.   On Facebook there is a group called "Keep Portland Weird"  I love their quirky postings/ pictures of Portland.  I think Portland is a really unique and special place.   Courtney and Morgan live there and so are living their lives there. It is home to them

Well before they were ever born, Portland was home to my family.  My parents and siblings.  Carol, Dale and I were all born in Portland.

A couple of moths before my mother died, Carol and I made a photo album for her with pictures of her life.  One of the pictures is of her, walking down the street, in downtown Portland, Oregon carrying Carol.

I thought of that picture today when I saw the Portland stuff on Facebook.  I decided to pull out the album and scan the picture.    So I did, and here it is, taken in 1948:


As you can see, the Orpheum  Theater is behind them.  So then I decided to search Google for pictures of the theater.  I learned that is was built around 1912, and was torn down in 1971

Here's one of the pictures I found online.  This picture was taken in 1946 I think:



Monday, April 7, 2014

I feel like I should be angry


Spring time and daffodils 


This stupid tumor.  Makes my head hurt.  And the constant hurting makes me tired and worried and scared and a bit depressed.  And I feel so done with this.    But I don't think I am angry.  I feel like I "should" be angry.  But I am not.

I sort of want to be taken care of.  Not begrudgingly, but genuinely.  I feel bad when I ask for some jobs or chores to be done and instead of "sure, I'll do that" I hear "why are you making more work for me?"    I am used to it, but at this particular time in my life, when I am busy carrying a tumor around, I need kindness and caring and giving.  Please, anyone who is reading this, do not take this as a criticism.   It is not meant to be.  It is not about You, it is about ME.  

This is so scary.   I know I am not the only one scared.  I do know that.  But I am the only one who not only feels the fear, but the pain.  And the anticipation.  I am pretty sure I am going to have to have surgery.  I don't want to have surgery.  I don't want to experience pain.  I know I can do it.  I have had a lot of surgery in my life.  I have never looked forward to it though.

I am afraid that I will have deficits.  I will possibly lose some of my abilities.  My mind might not be right.  Or, my mind might be as sharp as ever but I will only be able to talk slowly or poorly so nobody understands.  What if I can't knit any more?  Or read?

I don't even want to make any more appointments.  I just want them to be made for me and be taken to them.

I went to an all day LLL Leader conference yesterday.  Another Leader drove me, and a third Leader went with us too.  They both had little ones with them.   I had a terrible headache through the day.  But, since I was not driving, I was able to take some percocet to dull the pain some.

Of course, I am no longer one of the young, pregnant moms, nor am I one chasing a toddler all over the place.   There was actually one Leader there who is older than me, and a few contemporaries.  It was fun through because we have so much mothering experience, and wisdom, that the newer moms like to hear what we have to say.   There was one session where "millennial mothering" was the topic.   At the beginning of the session, the lactasouroses were asked to let the millennials talk.     What a great new word! 

One thing that is interesting about having this tumor, I can drink coffee late in the evening and still go right to sleep when I get into bed.   That has never been the case before!

Something I mentioned on Facebook the other day is that the weeping cherry tree in the back yard is starting to bud and bloom.  It was a gift from some long time LLL friends when my mom died.  yes, there is life after death!





Saturday, April 5, 2014

Borrowed words

This was written by Anne Lamott.  It spoke to me as I face changes in my life and my upcoming sixtieth birthday.
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This is the last Saturday of my fifties. The needle isn't moving to the left or to the right. I don't feel or look 60. I don't feel any age. I have a near-perfect life. However, I grew up on tennis courts and beaches in California during the sixties, where we put baby oil on our skin to deepen the tan, and we got hundreds of sunburns. So maybe that was not ideal. I drank a lot and took a lot of drugs and smoked two packs of Camels (unfiltered) a day until I was 32. I had a baby and then forgot to work out, so things did not get firmer, and higher. So again, not ideal.
My heart is not any age. It is a baby, an elder, a dog, a cat, divine.
My feet, however, frequently hurt.
My skin broke out last week. I filed a new brief with the Fairness Commission, and am waiting to hear back.
My great blessing is the capacity for radical silliness, and self-care.
I'm pretty spaced out. I don't love how often I bend in to pull out clean wet clothes from the washer, and stand up, having forgotten that I opened the dryer that's above, and smash my head on the door once again. I don't know what the solution to this is, as I refuse to start wearing a helmet indoors. I don't love that I left my engine running for an hour last week, because I came inside to get something, and then got distracted by the dogs, and didn't remember I'd left the engine on. It was a tiny bit scary when a neighbor came to the front door to mention this, and I had to feign nonchalance, and act like it was exactly what I had meant to do all along.
I backed into an expensive truck in the parking lot of Whole Foods last month. Boy, what an asshat THAT guy was. My bumper had fallen off in the mishap, and I had to tie it back on with the shoelaces from my spare running shoes. Sigh.
Wednesday, the day before I turn 60, I am having a periodontal procedure that Stalin might have devised. How festive is that? But that night, my grandson and niece will pelt me with balloons, and we will all overeat together, the most spiritual thing we can do.
Mentally, the same old character defects resurface again and again. I thought I'd be all well by now. Maybe I'm 40% better, calmer, less reactive than I used to be, but the victimized self-righteousness remains strong, and my default response to most problems is still to try and figure out who to blame; whose fault it is, and how to correct his or her behavior, so I can be more comfortable.
My friend Jim says, "I don't judge. I diagnose." That's me.
Spiritually, I have the sophistication of a bright ten year old. My motley crew and my pets are my life. They are why I believe so ferociously in God.
Politically, I am still a little tense. I love that Obama is president. I love Obamacare. My great heroes at sixty are Gloria Steinem and Molly Ivins.
Forgiveness remains a challenge, as does letting go. When people say cheerfully, "Just let go and let God," I still want to stab them in the head with a fork, like a baked potato.
This business of being a human being is infinitely more fraught than I was led to believe. When my son Sam figured out at 7 years old that he and I were not going to die at the exact same moment, he said, "If I had known that, I wouldn't have agreed to be born." That says it for me. It's hard here, and weird. The greatness of love and laughter, the pain of loss, the bearing of one another's burdens, are all mixed up, like the crazy catch-all drawer in the kitchen.
This doesn't really work for me.
If I was God's West Coast rep, I would have a more organized and predictable system.
So we do what we can. Today, I will visit a cherished friend post surgery, and goof around with her kids. I will try to help one person stay clean and sober, just for today. I will loudly celebrate my own sobriety, and also the fact that my writing has not been a total nightmare lately. I am going to go for a hike on these sore feet, and remember Gerard Manley Hopkins, "The world is charged with the grandeur of God." Charged, electrical with life's beauty and light! Wow. Then I will probably buy the new issue of People magazine to read on the couch before my nap, and a sack of the black plums at the market that seemed overpriced yesterday, but not today.
Thank you, thank you, thank you.

Friday, April 4, 2014

still becoming....

 



My sister and I went to the doctor today.  These headaches don't stop, don't go away.  Maybe I should say "this" headache since it is always here.

I was hoping that it was just a medication change that was causing the headache.   I know I have a brain tumor, I know.  I just thought that it was a simple fix I needed.

My doctor said that the tumor is more serious than he thought before. There is edema surrounding the tumor which means that there is some sort of "active process" going on.   Google the words "meningioma" and "edema" together if you want to know more.    Anyway, I am going to have it removed.

My doctor said that he wants me to go to Johns Hopkins.  He will talk to me next week and give me some names of neurosurgeons to contact.   Meanwhile, next week I am seeing a neurologist.   He won't be the one to take care of the tumor per say, but he might be able to help me manage the pain better.

I had planned to go to the gym today.  When I mentioned to my doctor today that I only got dizzy once recently, and that was when I was doing push ups.  He looked at me as though he thought I was crazy.  I have been instructed to stop doing push up or anything else too vigorous.  

Meanwhile, I'm turning 60 in a few weeks.   Wow, I have been working toward this birthday for so long.  I have thought out all of the possible scenarios:  a big party at church like I had for my 50th; a cook out on the deck; dinner with Nick.  I was not planning to have a brain tumor in the middle of all of this.  I was planning to be fit and healthy.  That's why I have been working out so much.  I guess it is a good thing that I have been going to the gym.  I am in better shape than I would have been otherwise.

Now, maybe I will be having my birthday party in the hospital.  We'll see.

I am still confident that I will still be the crazy, goofy me that I am after all of this.  (is there an "after"?  This is now a part of me and my history).  I am worried that I will be gorked out for the rest of my life.  I am afraid of slurred speech and eyes pointing in different directions.  I don't know why I worry about those things.   I just do.   If I don't get this tumor removed though I am really more likely to have issues.   I am already losing words.  Calling things by the wrong name, or forgetting words all together.  Maybe that's part of the aging process anyway.

My head is killing me.  If I shut my eyes, it still hurts as much, but somehow it is less bothersome.    I can sleep without the headache keeping me awake which I am so grateful for.

I am going to bed now.  I will look over my writing in the morning and see if/what needs to be corrected.

Good night!

Wednesday, April 2, 2014

Beautuful day of headaches

I was just outside and saw the moon.  It is just a fingernail of a crescent.  It is such nice weather.  About 60 degrees about now.  I wish it was always like this.  Not too cool, not hot.   Everything is starting to bud.  Daffodils are in bloom as are the crocuses.  I guess it is kind of cliched to love the springtime. 

And of course I have had a rough headache most of the day.   I went to the gym.  Went to Costco.  Watched TV for hours- old episodes of law & Order.   At one point this afternoon, I sat on the deck and shut my eyes and felt the sun on my face.  I could have stayed like that for hours.

I do look forward to getting rid of these headaches.  I am not sure how yet.  Probably surgery, which scares me.    I have had lots of surgeries before.  But as far as I know, never with power tools.

I want a day of doing nothing at all.  But when I have those days, I often end up feeling like a slug.

Another day closer to my 60th birthday.