It's Friday night and I should be asleep!

Every evening as I sit in front of my computer, I think about writing on my blog.  Then I tell myself that it is too late to start writing, so I don't.

I think I am getting better.  Slowly, which I find difficult and downright depressing at times. But better.

I went to the ENT (ear nose and throat doctor) about my sore throat and speech and swallowing issues.   The doc ran a scope down my nose into my throat and said that I have a very bad case of reflux!  I have reflux anyway, and I guess the intubation and the steroids in the hospital made it worse.  What a relief!  I thought I had permanent damage!  I am taking more Prilosec and it is really helping.

Yesterday we (Nick, Austin and I) went to Boston Market for dinner.  It felt good to go out.  We got there just as it was beginning to rain, and it was really pouring as we were leaving!  The only negative side effect was that I had a Diet Coke from Boston Market that was huge.  It was way more caffeine than I am used to or need.  I didn't get to sleep until about 6:00 am- as the sun was coming up!

Today, Nick and I went to the Dulles Town Center Mall.  I want to walk, but not in the heat or the sun.  The Mall is a nice, climate controlled place to walk and sit to rest if needed.  We walked the whole circumference of the mall both on the upper and lower levels.   I really needed that!

Chance had an encounter with a ferret yesterday.  Chance heard something scratching on his door, so he looked to see what it was.  Low and behold, it was a cute little ferret!  Chance kept the ferret in the bathroom to keep him separated from Harley the cat.  Signs were posted, and the owner, Chance's upstairs neighbor, claimed his baby today.  I love ferrets, but am glad that his owner turned up!

Our neighbors. Barb and David Black moved away last week.  They were the first people to move into the neighborhood 32 years ago.  Their oldest daughter went to kindergarten with my oldest- and now those little girls are in their 30s.     I remember picking out our lot.  There were only two lots left and we picked the one we are living at now.     There was construction down the street, and trucks driving up and down the street every day making a lot of dust in our brand new houses.     There are still a bunch of us "original owners" here.  And there are some who bought the smaller houses down the street and then moved into the bigger houses up the street.  I love my house and my neighborhood !

I started reading a book yesterday, which is real progress.  My eyes are not focusing as well as I would like, but I have been told to wait about 3 months after brain surgery before I get a new eye glasses prescription.   So I am glad I am able to read!

And now, to bed.

Life is just too strange

Who would have ever thought I would end up with a brain tumor? Who would ever expect anyone to for that matter?  Brain tumors are something you hear about someone's second cousin twice removed, living in some place you have never heard of, gets.  Not anyone you know.  And definitely not yourself. Right?

And yet, here I am.  Sore throat still after almost three weeks.  Still having trouble swallowing and talking.  Still exhausted.  Needing naps.  Daily.   Every day.   Having trouble reading.  Not so much with comprehension, but with the act of reading.  Like my eye glasses prescription has changed (it probably has).

Going over my surgical report with my sister revealed to me that the surgery was not totally straight forward.  There were some unexpected findings.  My intubation went much harder than expected and so I am still having the throat issues I mentioned.  But, I am here.  Alive.  And happy about it.   I just think that I am in some sort of shock still.  Maybe I will be forever, I don't know.

I feel like I was just walking along, minding my own business when, wham, hey, how about a brain tumor. Your life has been going too well lately and it's your turn for shit to happen.  Yeah.  It's like that.

I think at this point, I am supposed to be thanking God or something.  But I haven't done that since I was about 7 years old.    "hey God, you know that little girl that got hit and killed by a car today.  Sucks to be her- thanks for saving MY life".  No, that doesn't work for me. 

I guess I could thank my doctor who took my headache seriously and ordered an MRI.  He found out that there was a tumor there.  And yeah, the team at Hopkins who also took me seriously and removed my tumor.  Yeah. Thanks guys.  Well done!  Keep up the good work! 

So, I am still here.  I am happy to be here.  Happy to be alive.   Taking a little break from my usual chaotic and busy life to take care of myself.  At least to take better care of myself than I have up to now.


As Kurt Vonnegut said "and so it goes"

No more staples!

I am definitely in healing mode.  I am exhausted.  I am told that is to be expected for at least another couple of months.  So I will keep taking naps, and learn to spend days in my pajamas without feeling guilty.


Got my staples out yesterday.    Here are some pictures- before and after.

  

Just past the two week point

On Facebook I wrote that I am three weeks out from surgery.  Well, I was wrong.  I am just over two weeks out.  I am "on the other side" of the surgery.  This is where I wanted to be, and here I am.  I guess when you go to the "other side"  (sounds more mystical than it is), it means you have made a transition from "before" to "after", or even "Now"

I went to the hospital.  I got drugged.  I got cut open and denuded of my brain tumor.   I got a very sore throat and a head full of staples.   I got to wake up and know about it and think about it and write about it.  All good things.  I am not disabled in any way that I am aware of at the moment.  I suspect that once the staples are out of my head (they come out Thursday), I will start to "feel" more normal.  

Eventually I will be driving and going to the gym and doing everything I was doing before the tumor.  Except, I will always know that I have had a tumor.  In my brain.  That my brain has been opened up and mucked about with.  In necessary ways of course, but still.   It is so so secret what goes on in there.  The structures are isolated.  The tumor is removed.   The bone flap goes back.  The skin covers it all up.   Everything heals.  But my brain had changed somehow.  Profoundly.   I know that my feelings right now are mostly due to how recently this has happened.  But I believe that I am forever different and changed.   I know that I am.   I do.

One thing that amazes and surprises me is how absolutely exhausted I get.  The last few days I have taken 4 hour naps in the middle of the day.  And have still been able to sleep at night.  

The bones, blood vessels, nerves (I guess) and all of my bodily functions have been disrupted.   My thoughts have been changed and affected too.   I have had a couple of crying spells.  Not anything embarrassing, just feeling with such intensity that the tears ran down my face.   It's good.

Now I am going to bed.    My throat still has not recovered yet.  It's getting better, but still sore.   It will be better soon.

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.

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

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!

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.