May 3, 2020 a bit graphic

Day 3 of Brain Tumor Awareness month and I chose to share a picture from my v long recovery.

This photo was taken August 2011, about a week after my 2nd craniotomy. Not a pleasant sight.

Bookz

I traded these at a Little Free Library today! Although reading is pretty hard for me post-op, I’ve had a deep love for books and reading since grade school.

Unexpected

I ran into an old colleague. It was unexpected but really nice to chat with her for a few moments.

Eight years ago, when I was literally being wheeled to my first craniotomy (head bandaged and wrapped and all) – we passed each other in the hospital. I in my wheelchair, she was standing near a Nurses Station. I assume she was there visiting someone, family, etc. I can still see and feel in my body RIGHT AT THIS MOMENT my emotions at that exact moment – so many years ago.

It’s so odd to me, albeit even overwhelming, that I still have such intense reactions to things that trigger me to that time in my life.

That time of my life was a living hell.

I wonder if my vivid memories – and the reactions they trigger in me – will ever subside?

Never say never

I’m having surgery tomorrow.

You know, I swore that after my last surgery (the hysterectomy) that I would NEVER have another surgery.  Never ever.

And, yet here we are.

For the record, thankfully it’s not on my brain or my breasts.

It’s time to say goodbye to my gallbladder.

 

Catch you on the flip side friends!

Doing it different, if only for today

I write to understand myself better.  I write to understand Cowden’s Syndrome, and Lhermitte-duclos Disease better.  Some, if not most of it, isn’t pretty.  I don’t want to censor myself here.  On my blog.  The place that I have to be me and can be open and honest about everything that is in my heart.  I use this blog as a journal so that I can look back on things to see growth and change (for the better, is always my goal).

With that all being said, I’m not sure how to write about this while keeping things “clean”.  Ahem.  There have been about 4-5 times since the hysterectomy (December 2013) where I have found “stuff” that shouldn’t be found.  (I am sure you can infer where I am going with this.)  While it concerned me and unnerved me for a bit, I was so shocked that I wasn’t sure I could believe what I was seeing.  But since it has happened only a handful of times in the last 7 months I knew it wasn’t a dire situation.  So I let it be.

It happened again this morning.  My first thought and instinct was, ” THE BAD PLACE.  MUST GO THERE NOW!”  But, I came back from there very quickly.  Much to my happiness (and shock, actually).  I reminded myself that I could count on one hand how many times this issue had occurred since December.  Took some deep breaths.  Knew (and felt) it was time to call the doctor; I couldn’t ignore this any longer.  But, more than that.  I didn’t want to ignore this any longer.  I was ready to take the steps to look into this further.  I think that Cowden’s Syndrome; and Lhermitte-duclos Disease has made me very gun-shy when it comes to things going “wrong” with my body.  I don’t know if I was ignoring this, technically, but I guess I was self-preserving?  Hoping/thinking/wishing/feeling/wanting it to eventually stop that I didn’t need to jump to the doctor as I usually do.  This is very interesting to me as I’m writing this.  One of the biggest anxiety factors for me presently that I am working on is I don’t want to “miss” anything in my body and get blindsided again with another 5 cm tumor in my cerebellum (or elsewhere).  That makes me always on guard because I have to be ready.  I will do anything and everything to catch another brain tumor.  But, yet with this issue post-hysterectomy, I was content to wait it out a bit to see if it worked itself out.  I think that’s growth.

Made some calls and I have an appointment scheduled in a few weeks.  “Scar tissue; nothing to be overly concerned about; we will take care of this for you, doesn’t happen all the time but sometimes it does,”

I am still breathing.  It is OK today.

Fun Fact Friday 6/7/14 (late)

When I was in the hospital during either my 1st or 2nd brain surgery extravaganza, I experienced quite a bit of difficulty with…how can I write this eloquently?

“Going Number 2.”

I was taking so much medication it makes perfect sense, but before I could be discharged I needed to take care of this most important biz.  You get my drift?  🙂

One of my night nurses told me she had the perfect remedy to help me.  It was her Special Secret Drink and she only brought it out on special occasions.  My predicament called for it.  She was ready to help me.  And I was ready to have her help me.

She brought me the best tasting drink!  (Want to know a secret?  At times, I try to recreate this magical elixir at home.  But alas.  I always fall short.)  I think it had cranberry juice, 7-Up, orange juice, pineapple juice, and I think there was another juice in there too.  Of course, I can’t forget the most important ingredient...PRUNE JUICE!

It was so good.  So, very good.  Let me add that after I drank a few glassfuls…all was right with the world. 

I remember asking the nurse the name of the drink –

“Sex On The Hospital”

🙂

Because Previvor (Photo of the day 1/22/14)

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6 weeks ago today I became a Previvor. I decided that the risk of uterine cancer wasn’t ever going to haunt me again!

Fun Fact Friday 1/10/14

So I had all week to think of a fun fact for today.  And, as I was getting ready this morning to go Nephew #2’s class to volunteer, it hit me like a ton of bricks.

  • I wore pants today!

This may not sound too big to you…but, to me – it’s HUGE!  What with hitting the 4 week mark on Wednesday since the surgery I’ve worn sweats non stop for the last 28 days.  This is a milestone!

Right before

You know, I have debated about whether I was going to write this post.  The one that is the day of surgery.  The emotion. The fear.  The worry.  The “trying to be calm but not” feelings.  All of that.

But as I have pondered things these last few weeks since the hysterectomy I decided that I should write this post.  And, I will.  Because my voice has value and meaning.  And, while my blog has a lot of non-Cowden’s Syndrome and Lhermitte-duclos stuff too, its main purpose is to raise awareness for rare diseases.  Two of them, to boot.

So, here we go…

I guess one of the good things about there being some distance and time since that morning of surgery is that my emotions are not so raw today.  Not as tender; however, some of that morning’s events are etched in my psyche forever.  Not to be dramatic; just stating a point.

I remember:

  • Checking in. Handing the staff my insurance card and getting my ID bracelet.
  • Sitting in the chair next to mom.  Just trying to focus on my breathing, nothing more.
  • Walking to the pre-op room and changing into the gown.  I remember the nurse who walked like a turtle (no joke) and as fast as one, too.  Nurse G.  She will come into play later on.
  • Looking at the clock.  It was around 8 AM or so right around this time and the surgery was scheduled for 9.
  • Meeting the anesthesiologist.  I told him to please be mindful of my tongue since during the last surgery I almost bit it off.  (I suppose a 13-hour craniotomy and negligent anesthesiologist will do that to you.  Ah, the risks of surgery.)  It was very important to me to express my concerns and feelings to this anesthesiologist.  He was kind.  He was attentive.  He listened.  I am grateful to him.
  • Nurse G not able to find a vein in my arm.  She checked my wrist, my arm, my upper arm, all over.  Cue nerves.  She began to make some smart-alecky remarks to me, but in her defense I can see now that she was trying to distract me.  But, let’s be real.  She sucked at it.
  • Leaving pre-op (Mom got to come too) and going to the room where you are really prepped for surgery.  Nurse G is there.  Anesthesiologist.  Mom is sitting to the side of me.  Another nurse comes into my curtained area.  Then, another.  Both of my arms were stretched out to my side and medical personnel are scrutinizing my veins.  Like, crazy.
  • Cue the panic.
  • Nurse G said, “I am about to slap you” (if you don’t calm down, relax, something.)  I don’t remember the rest of her sentence, only that she told me “I am about to slap you.”  This is minutes before surgery.  Who does that?  Why type of human being tells a patient this before they are having major surgery?
  • Someone finally found a vein.  I don’t remember who.  I remember feeling relief.  I said, “I love you” to Mom.  The nurses wheeled me into the actual operating room.  I was wide-awake to remember all of this.  Yuck.  Maybe you do stress/panic/medical stuff better than I do.  But, I really didn’t need to be coherent being wheeled into that room.  And, in hindsight (NOTE:  If my veins had cooperated), I wouldn’t have been as coherent as I was.
  • Seeing Dr. K at some point during this cray-cray.  I remember asking him if he had gotten a good night sleep the night before.  That was very important to me that he had slept well.  🙂
  • The anesthesiologist said to me, “We need a lot of good oxygen in your lungs” as he put the mask on my face….and then I was out.  But, my last thought was, “Wait.  What?  I don’t have enough oxygen in my lungs?!”  I pondered for months that I wanted my last thought before surgery to be happy and free and light and unicorn and rainbows.  This wasn’t it.

Then, I woke up.