Friday, June 27, 2014

So much on my mind- or is there?

I guess that there is a sort of space where my tumor resided that is filling up with thoughts.   Or brain matter.  Or fat.  Or whatever is supposed to be there.  The only thing I do know is that the tumor is not there. So I am told.  Next week I will go get my staples removed, and get a copy of my report.

What I have been told is that the whole tumor was removed and it was benign.  As benign as something that isn't supposed to be in our brain can be.

Months of having my energy drain.  Months of blood shot, dry painful eyes.   Months of watching my skin get sallow.  Months of "what ifs".

And now I am happy to take as many months as it takes to recover my strength and maybe learn about myself along the way.

It is almost impossible for me to "just" sit and do nothing.  I am really too wasted though to do anything, so I guess my body is telling me to be good, behave, get better.  Take it slow.   Normally I am very impatient, and I am sure I will be again soon.  As soon as my real energy kicks back in.  For now I am happy to change out of my sweaty t-shirts a couple of times a day.  With Nick's help, I managed two showers today.  I just feel crummy and my arm pits stink, so clean body, clean clothes and baby powder makes me feel like a new person!

Of course, hair washing isn't really happening yet. I have a long line of train track looking staples in my head.  I am not supposed to disturb them, so I kind of wash and rinse around them  For now.

Next week the staples come out.   Then what I don't know.  Another MRI in three months to see how things are going.  If it is up to me, and I know it isn't, there would be no more brain tumors.  In my head or anyone else's.  Nope.  None.

I have really been doing some "deep thinking" since my surgery.  I am sure that is common after any major medical event that is so potentially life altering.   I feel wise.  Sensitive.   Aware of feelings both physical and emotional.  I feel so much of the sensations I imagine a newborn feels.  And I am so sorry that they are not all treated with the care, gentleness and dignity they deserve.  Yes, we survive.  Mainly intact as human beings.  But, the sensations are so raw.   Lights, loud noises, aggressive rubbing and massaging.   I know that there are times when these things are essential to the baby's life.  But I cannot imagine that it the norm.   I think that the newborn is more of a bud that needs to gently unfold and stretch and smell and feel and hear and feed.  All of these sensations are one and combined.  They are defined and yet they are not.

I have been the baby's advocate forever.  Now I feel even more strongly that I need to advocate for mothers and babies.

The first time I tried to clean up, in the hospital, after this surgery, I felt my skin.  My flesh.  Soft and malleable.   Tender and pink and doughy.   But not repugnant, as I would expect (my age and weight).   I felt like I was all new and soft and needing so be tenderly cared for.  And loved.  And I was.

I am 60.  Even with all the drugs on board, and brain surgery behind me, I could tell what was real and was was not.  I have an idea what the world was and what it held.   I understood pain.  And fear.  And also trust.

I can only try to be that newborn, soft, warm baby and imagine what it experiences in it's first moments.  I know what I want it to feel and see and hear.   But I think that will have to be another story for another day.

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

Holly crap!  I have had Brain Surgery!  How can that be???


Wednesday, June 25, 2014

Just over a week after surgery

It's Wednesday, June 25, 2014.  My surgery was on the 16th, just over a week ago.   And yesterday was our 42nd wedding anniversary.

If I can get the pictures to load, here's how I look as of last evening.


 My new hair style!


No more blood shot eyes!

Sunday, June 22, 2014

Cold feet. warm socks

This morning, when you came downstairs, I was snuggled up on the sofa.  I told you my feet were cold.  You took off your warm socks and put them on my cold feet.  My feet weren't cold any more.


That my love is us. 



life

Saturday, June 21, 2014

Where did I put that darned tumor anyway?

Oh yeah, somewhere in Baltimore.  In a petri dish, or where ever they put things that need to be medically examined and biopsied. What I do know is, that I am in Reston and my brain tumor is NOT!

I am not sure exactly how I feel.  Or if I am supposed to feel a particular way.

My greatest fear, I think, was of the possible impairments that could have come with this tumor, and with surgery on my brain.  It's kind of a big deal.    I was told that the tumor was completely removed and was benign.  Two good things to hear.

I am going to be on seizure medications for a while because brains are not happy when they have hands messing around in their space.    Not sure if there will be side effects or not.  Probably too soon to say.

One of the medications, that was intended to protect my gut from the irritating medications, instead, had an opposite effect.  Fortunately I think I know my body well enough to figure that out and take care of it before getting too depleted from diarrhea.

I want to sleep.  But I don't want to miss anything.   Like my kids when they were little I guess.  Oh, what mother doesn't long for her little ones to nap, only to fight with them because they are so present and want to be in every moment.  And why does it take so many years, after the napping battles have passed, to realize the futility of the battle.

So, I am 60. Still.  For most of another year.    I feel so ready to be done with diseases.  Forever.  And ever.  I guess that isn't an option.  But one can hope.

Courtney put a picture of my head. scar on my caring bridge page.  I am going to put it here too.  This picture was taken shortly after my surgery I would say.   I have washed my head a few times since then, but it still looks strange having a train track's worth of staples in my head.    Funny though, they don't feel like anything.


I think that the option of colorful beads should have been offered!

My arms and one foot are all bruised up.   Lots of needles, IVs, blood tests and blood gasses.  I had a catheter too, but only  vaguely remember that (thank goodness).

One thing I knew going into this was how loved I was.  I am.  I know I am.   Courtney and Carol and Nick all had to see me suffering, unable to speak and in pain.   I know that they were really frightened and would have done anything possible to care for me.  And they did.  They held my hand when I squeezed so hard I know it had to hurt them.   They helped me in intimate ways that only family can.   Hospital personnel do their jobs and comfort and clean you, but not with the love that your trusted family does.

How do I say this so that it makes sense?    I feel that, in many ways, I have chosen a life that is not always easy.  Being a wife.  Being a mother.  Being a sister who really knows the depth of the love that only the two of us can know.    These are things that take time and energy.  But, they are the best gifts I could have ever given myself as well.   How many people are so lucky to know that they can have complete trust in the people closest to them?    Wow.  

My head may be down one tumor, but my heart is filled up a million sizes more than before.


Thursday, June 12, 2014

So many emotions

I am getting close to the end of being someone with a tumor.  That's fine.  I am looking forward to that.  But, as I have said before, I am scared.  Scared of the surgery and the pain.   Scared of being disappointment that my recovery will be slow.   Scared that I will be changed somehow.

I am tired of being tired.   I feel really lucky to have so many people in my life who really care and worry about me.  And I feel badly that I have put them through this.  Especially my family.  I know, it was not my idea to get a brain tumor.  I am afraid of how it will effect everyone if things don't go as planned.

In 1988 my mom went in for surgery to unblock her carotid artery.  I got a phone call from my step father saying that my mom had gone through surgery just fine and she was in the recovery room.    Within a few minutes, I got another call- something had gone wrong and my mother had suffered from a massive stroke.

I was so mad, scared, upset- I don't know what all.  I couldn't do anything for her.  I couldn't make her better.   I had small children, so I couldn't stay at her bedside 24/ 7 and care for her.  I'm not sure I would have known how to care for her.

My mom lived for another 16 years.   She was somewhat rehabilitated, and was able to be independent and drive for a while.  But she never totally recovered.    She lost the use of her right side of her body.  She had to use a cane.  She was disabled.   She was 62 .  My mom went from being a fiercely independent, feisty, young 62 year old, to being an invalid overnight.

She was cheated.  We were cheated.  Her grandchildren were cheated.

Christmas 1999.  Our last Christmas with Dale.


My mom was never one to keep her feelings and thoughts to herself.  She had little tact and fewer filters.  We all knew we were loved by her.  But we feared her and what she might say.  She was a little, crippled lady with a cane.  There was no way she could "hurt" anyone- unless you got close enough to get hit by her cane (that never happened by the way).  But she was scary and we tip toed around her.

My poor mom.  She had been badly abused by my dad, All three of her children (yes I was one) gave her a lot of grief and worry.   Worse than any of my kids ever did with me.   When you feel powerless and the only power you have is through your words, you can hurt others deeply through your own pain.    I know I did that to my own kids.  My mom did that to us.

But we loved her too.  Deeply.  I was often afraid to "talk back" as an adult and tell her what I feeling.   I was afraid of being attacked.     But at the same time, I knew how wonderful and generous my mom could be.  She gave unsolicited  gifts to friends and family when she knew they were in need. She really did care.

After my brother died, a big piece of my mother died too.  All of us really. A chunk was pulled out of our hearts. Forever.  Dale.  My big brother was 9 years younger than I am now.

After my mom was moved into assisted living, I started to really understand what I have often told others;  those who are hardest to love are the ones who need it the most.    That was my mom.

We (meaning my sister) got my mom on some medication that helped take the edge off of her anxiety.  She was so much nicer to be with.  And fun.  And she was happier in herself too.  It's so sad that it didn't happen before she became totally dependent on others for her daily care.

My mom with her first great grandchild 2002


What brought all of this on?   Life.  Brain tumors.  Worry.  Anxiety.  Love.   Missing my mom.


Tuesday, June 10, 2014

Family


These are my grandparents, on my father's side.  Nicolai and Karen Thompsen
1910.  On their wedding day.


Both of my grandparents emigrated to America from Norway.  They met in the US.   My grandmother did not speak English until her children started school.   I never met my grandfather, and I don't know if he spoke any English at all.

Whenever I asked my father anything about his father, he would get mad and refuse to talk about his father.

My grandparents were married in 1910.  They had five sons, my dad being the middle child.   In 1939, my grandfather decided that it was time to go back home, to Norway.  My grandmother refused to go.  As she told me, she said "I have five American sons, I am not leaving".    This was in the middle of war time, not a good time to go to Europe at all.    They never saw each other again.

My grandfather was born Nicolay Tobiasen in Farsund, Noway in 1888.  He died in Farsund, on the family farm, Kjørrefjord.   His name had been changed to Thompsen in America, (my maiden name), but on the grave stone it says Kjørrefjord.    

The reason I am interested in my grandparents, particularly my grandfather is that he had a "brain infection".   I am not sure exactly what that meant, or how it was diagnosed.  I do know that he had brain surgery at  Rikshospitalet in Oslo.  I know that he got an infection from that surgery and he died in 1945 at the age os 57.

I wish I knew him.  I wish I understood what happened to cause the rift in the family that kept my father from talking about him.  But, right now, with my impending brain surgery, I wish I knew what his diagnosis was and how it was arrived at.  I don't imagine I will ever know.

Weren't that a nice looking couple!     So many stories I will never know.

Sunday, June 8, 2014

"Home"

Christmas 1985

 We lived in Tromsø, Norway from 1984-1986.   It was by far one of the most beautiful places on earth.   And I spent most of our two years there looking forward to being nostalgic about it. 

Courtney was 6 and Morgan was 3 when we got there.  Our third child, Darcy, was born about 3 weeks after we arrived in Tromsø.  His birth was not the wonderful experience I had envisioned, but was very traumatic.  I had pretty bad postpartum depression, in addition to the stress one always feels when moving to a new home in a new country.  I did learn the language before going there, which was a big help.  Most Norwegians speak English, but in this small town 217 miles above the Arctic Circle, Norwegian was needed and used every day.

The days are 24 hours long in the summer-the Land of the Midnight Sun- but by August, when Darcy was born, the days were getting shorter.  By mid November, the sun left and did not come back until mid January.  The  mørk tid, "dark time" was really hard that fist winter.  In fact, the picture above, that we used for our 1985 Christmas card was taken in October.  We had to take it when there was still daylight!

We took a trip back to the States in the summer of 1985.   Today, quite by accident, I found a note I had written to my mother and step father after that trip.
 ******************************************************

"August 8, 1985

Dear Mother and Chet,

Well, we all survived the trip "home".  The kids are all great travelers.  There were just us 5 and one man in the whole upper deck of the plane- so the stewardess gave us a lot of attention.  She took Darcy for a walk while we ate.  Courtney and Morgan got to see the cockpit!  Courtney was very impressed!  Morgan and Darcy slept a lot, Nick & I a little and Courtney not at all.

I was depressed all the way home, but once I walked into the house I felt like "big deal what was I worried about ?"   I don't love being in Tromsø, but home is home!

The kids are so happy and relaxed!  We all have jet lag, but that won't last.   Morgan starts in barnepark  the 19th.

Nick leaves tomorrow for 10 days to work at a trade  fair.  Then back for a couple of days then he leaves again for 2 weeks.  Oh well!

Hope to hear from you soon!

Love, Nancy, Nick, Courtney, Morgan & Darcy"

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

So, home is home.

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

Saturday, June 7, 2014

Progress

I finished my "brain" hat the other day.  So I decided to take some "selfies" of myself wearing it.  The first picture was taken with flash and quickly discarded.  

Not sure how many of them I will post here.   I love looking at the background at my sewing room!





Back view

"100 Years"


These are the lyrics to a song that was on the radio a lot around the time my mom died, in 2004.   I like the way this sort of summarizes  a person's life and how fast it all goes without us noticing:

I'm 15 for a moment
Caught in between 10 and 20
And I'm just dreaming
Counting the ways to where you are

I'm 22 for a moment
And she feels better than ever
And we're on fire
Making our way back from Mars

15, there's still time for you
Time to buy and time to lose
15, there's never a wish better than this
When you only got a hundred years to live

I'm 33 for a moment
I'm still the man but you see I'm of age
A kid on the way, babe
A family on my mind

I'm 45 for a moment
The sea is high
And I'm heading into a crisis
Chasing the years of my life

15, there's still time for you
Time to buy and time to lose yourself
Within a morning star

15, I'm all right with you
15, there's never a wish better than this
When you only got a hundred years to live

Half the time goes by
Suddenly you're wise
Another blink of an eye
67 is gone
The sun is getting high
We're moving on

I'm 99 for a moment
I'm dying for just another moment
And I'm just dreaming
Counting the ways to where you are

15, there's still time for you
22, I feel her too
33, you're on your way
Every day's a new day

15, there's still time for you
Time to buy and time to choose
Hey, 15, there's never a wish better than this
When you only got a hundred years to live

Friday, June 6, 2014

My new shirt

I got this shirt for myself from Zazzle.com.   You can design your own there (and other places).

The picture is actually an MRI of my brain and tumor (the little white spot seen on the upper picture near the bottom of the brain)

I got this in the mail the other day.  What do you think? (no, that is not me wearing it- it is a model on their web site)





Thursday, June 5, 2014

Counting down some more

I have been trying to write about places we have been  and our homes there.  Mainly focusing on kitchens.  And I have quite a few more to add.   One of these days I will put pictures of our actual kitchens, not just clips from online.

Tonight I am going to write about myself.  My present self and my current state of mind.  If that works. 

Of course I have been really stressed about having a tumor in my head.  And I know that my family and friends are worried too.  I have been missing some of my regular activities because I had too big a headache.

Today, my sister came over.  We mostly lay down on the sofas and watched TV.  I didn't really feel "sick" today.  Just drained.  Tired.  Worn out and faded out.   I am sure a constant headache must release some stress hormones into my system and make me feel sick in fact.

I am having surgery in ten days.  That's not very long now at all.   I am scared.  Of the things I have written about like having my head cut open with power tools.  But I am also afraid of what they will find.  Has the tumor grown?  Could it be cancerous?  Will it come out, be gone and never come back?

I worry about the potential deficits I may be left with.  I feel confident that I will come out of this alright.  But there is no 100% guarantee.

I am falling asleep in front of the keyboard.  I shouldn't do that!

So, good night!

Wednesday, June 4, 2014

A tiny bit more about Poland

In my last little ditty on Poznan, I wrote about the temporary apartment we lived in.  I didn't even start on the kitchen that we had for most of the two years we were there.

We had a flat/ apartment, in an German style house.  There was an entry way with steps going up and steps going down,  The "going up" steps led to our apartment.  There was an almost identical apartment apartment above us.  On the top floor was a garret/ attic apartment that was quite small, made smaller by the sloped ceilings and the dormers in some of the windows.

Each apartment took up the whole floor it was on, so, in that respect, it was not a typical apartment house.

Our kitchen was medium size I guess, but I am not sure exactly it was medium compared to.    It was big enough for the three of us .  There was one door into the kitchen- right at the end of the long, foyer inside the front door.

When you walked in the door, there was rustic Polish table and chair set.  On the wall to the right of where you walked in was the stove.  It was pretty big, and I think it might have had two ovens side by side    Further along- at the end of the stove wall, and perpendicular , was some counter space and the sink.


This is similar to what we had.  They open out to get fresh air and the interior parts opened in


On the back wall was a big window sill that was over the big hot water radiators.  There were 3 or 4, big, German style windows.  They were very high, I remember that.  The inside/ house side of the windows opened in, like a hinged door. Then there was a second set of windows in the same frames.  These windows opened out.  I am sure that the reason for the double glass is for weather proofing in the cold winters.
This is not the house we lived in, but the style is similar
.
 



We had so much fruit growing in the yard that I was able to make all sorts of pies and apple sauce and apple crisps.  But I digress.

We had 12 apple trees in the yard as well as a few, not very good, pears.  And there were a couple of walnut trees that dropped nuts that had to be cleaned off. 

The kitchen table was in use almost all of the time for one thing or another.  Most of the time we had a reddish Batik table cloth that Nick's parents bought whe we all went to Bali together.  

This is the type of kitchen chairs we had: 


Ok, back to the kitchen.  Walk in.  Stove to your right.   Counter space where coffee fixings were kept and where baking took place.   Then there was the wall with the sink.  A stainless steel sink.  There was some counter space on either side of the sink.  I think of this cupboards as being greet.   

After the sink and counter tops, there was a pantry. It held a lot of the foods that we brought back from our shopping exploitations to Berlin; the land of plenty .  This was a walk in pantry, I could say it is a good space, but not a whole lot more.  For some reason, that little pantry had a small window in it.  I don't think it was able to be opened.

Courtney's high chair fit perfectly at the end of the kitchen table, with the big windows at her back.

Since I am falling asleep in front of the computer, my poor, tired body  it telling me to pick this body up and get to bed.

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

Ok, I went to bed.  It's a new day.   I just wanted to add my "freezer list" from when we lived in Poznan.  We had a deep freeze in the basement and kept a lot of stuff there.  This is how I knew what we had before going and looking for it:  It has what I bought, when I bought it, and where I bought it.  I crossed things off after using them.  You can make the picture bigger if you click on it.



Here's a copy of one of my meat orders:



Monday, June 2, 2014

The i-cord and my brain hat

There is a knitting technique called "I cord" As non knitters reading this, you might be wondering what the heck I am going on about.  So here:


The I-cord is a tube knitted in the round with two double-pointed needles.  Elizabeth Zimmermann named it the Idiot Cord in honor of her accidental discovery of the simple technique. The I-cord is a perfect example of her attitude toward knitting: let it be fun, free of needless complications, and full of discovery. In this picture from The Opinionated Knitter a wonderful collection of her newsletters, Elizabeth wears an I-cord attached to her glasses.  Once you learn to make one, you'll be searching around for anything that might be improved with an I-cord.

I wanted to copy a pattern of a hat I saw that looked like a brain.  So, I made the hat, in pink, like the picture I was copying.  But I couldn't make myself do the brain part in pink.  It was too weird.  Too gross.  Too close to home.  Too much the color of bubble gum or Pepto Bismol.

I had this really colorful yarn lying around, and I decided to start making a long i-cord, thinking that I would make the brain multicolored, and fun.   One small problem.  With yards of i-cord, and a floppy hat, how would I ever be able to attach it all?  I tried placing the hat on a baby doll's head, but that didn't work too well.   I searched Styrofoam heads, and found a place that sells them.  Perfect solution!

I have pinned on most of the i-cord I have knitted so far.  I need to make some more so I can complete the hat.

Here is what I have so far:  Don't I  have a cool brain!

Sunday, June 1, 2014

Very quick, late night, tired Nancy post

This evening I was putting the clean towels away in the linen closet.  They reminded me of going shopping with my mom before we went to Australia.

I had told my mom that our house in Perth had five bathrooms, so we needed a lot of towels.  I have two sets of green/ yellow/ blue striped towels that my mom bought.  There are also some floral towels.  We still have them after all these years.  And I still remember the joy in my mom's face as she proudly told anyone that would listen "my daughter is moving to Australia.  They will have five bathrooms in their house."

I wonder if anyone was impressed by what my mother said?  Her gestures, like furnishing your five bathroom house with towels.

Ok, off to bed.  Maybe I'll dream about towels!

Speaking of kitchens

Look who decided to visit us in our kitchen here in Reston!




He has moved on.  We won't miss him!