Picking Up The Puzzle Pieces

My life has been a bit nuts as of late, well the entire last year, but more so in the last week.  It all started Saturday when I was in Kent wondering around the garden centre.  One of the more maddening things that has happened to me since surgery is, I can't remember the names of plants or shrubs in my garden anymore.  If you know me at all, you will understand how horrific this is to me.  If you don't know me, I will tell you, I love to garden and had become quit good at knowing the names of my dirt dwelling friends.

So as I wondered around the garden centre staring blankly at most shrubs, but remembering a few I started feeling off.  I can't tell you exactly how I felt, I just knew it wasn't right.  As we walked down the aisle it became all to familiar, this was a migraine, but not just any migraine.  This kind of migraine brought me to my knees in fear at work last summer, it caused me to have to pull over while driving as I could no longer see properly in November  This migraine affects only my right eye (the one with the damaged nerve that requires the prism)  It is like someone has taken a piece of the puzzle out of my visual field, it is way more then just an aura, it is loss of sight.
I took the keys from T Jay and my son's hand and headed for the car.  Once inside I closed my eyes, if I don't have to look, then I don't have to "not" see.  T Jay was right out and we headed for home, becoming very nauseous during the drive.  I spent the rest of the day in bed.

Monday, was spent at the eye clinic where I was told that my eye was getting better and was able to down grade to a lesser prism.  Very exciting news.  I did tell the Opthamologist about the "puzzle piece migraine", I got a "hmm, we'll keep an eye on it" Not really sure what that means coming from an "eye" doctor.

Tuesday had us seeing Dr Mulroy at the Cancer Centre for the first time.  I didn't like entering that section of the hospital.  Even though I know I don't have cancer, and I am so grateful for that, it's just not a place I ever thought I would be.  I instantly, however, liked him.  Lovely and kind is the energy he gives off, which tells me he is in the right profession.   A profession I am sure, must be extremely difficult at times. The information he had for us however, was not quit what I expected (see...lesson number one in having a brain tumour, expect nothing.  I still haven't mastered this life lesson)  I was expecting to hear what my Neurosurgeon said which was the following:  I'm no longer a candidate for surgery therefore, we should look at radiation.  It would most likely be one dose, which doesn't shrink your tumour, but stops it from growing.    Instead I heard my new Doctor say the following:  "You are no longer a candidate for surgery therefore, we should look at your option for radiation which we would do once a day for five weeks".  WHAT?   What did he just say as my tiny hand and brain work together to do the math on my fingers like a 7 year old.  5 10 15 20 25?  25 treatments?  What happened to the 1?  As he continues to talk about the fitting of the face mask, another MRI and CT scan and the timing of all of this to be in about six month.  I am still wondering where the "1" went that my Neurosurgeon talked about.  He then told us about the risks that are involved which include getting a brain tumour.   My dry scene of humor can't help itself and blurts out, "well since I already have one of those what would you do if I was your mother or if you were me", his response, "prepare for radiation is 6 months".   "You  have a tumour that figured out how to grow to a significant size already, we don't have the answers on how long that took or if it will continue"  He also spoke about the fact that radiation does indeed slow the growth of tumour cells and CAN shrink a tumour size.  I hear this and it registers in my head but I'm still so caught up on the 25 that I can't get it together to ask why one Doctor said it doesn't shrink a tumour and he, another Doctor is saying that it does.  All I do is continue to listen to him answer all of T Jay's questions.  These are all questions that I have in my head but I'm now back to information overload and I just shut down to protect my sanity.  This is the most amazing thing about T Jay and I, we work like we are one, our souls are connected at a level that is indescribable.  He picks up on non verbal clues and takes over right where my brain has left off, or in most of these cases shuts down.

 Today is now Thursday and I still don't feel right.  As excited as I am to be down to 400mg of Gabapentin, my face is starting to act up.  Each day getting worse, the crazy thing is I can't feel the right side of my face, yet I can tell you right now where each one of the three branches of the trigeminal nerve are.  There is an intense pressure building and a zipping going through my teeth that I am on high alert that the debilitating shock of trigeminal neuralgia is only moments away.  Yesterday I went back into living in fear.

So since lesson number one is "to expect nothing" lesson number two is once again "be grateful."  I am lucky to be in a position that my tumour is not cancer.  This allows another 6 months of healing to happen before radiation is to begin.  If it was cancer, I am sure I would be well underway.  I'm grateful to be under the care of another new Doctor, one who is also understanding and kind.  I am however, the most grateful for T Jay.  He is my go to, my shoulder to cry on, my person who takes the brunt of my questions that don't have any answers. He listens, he helps, he understands but most of all he is right there with me on a journey that seems so endless.  He is there to try and help me put the scattered pieces together from a puzzle box without a picture.

Smarty Pants

I'm currently down to only 400mg of Gaba now.  Exciting, as of course the hope is to come off this medication completely.  This has caused two things to happen.  First, I no longer feel like a walking druggy.  I've spent the last year fairly medicated and felt I was walking around in a medicated fog.  Second, I'm started to feel things a bit more, sadly the "things" are pains.  The crainiectomy or permanent hole in my head hurts, as does part of the incision.  Now this could also be something else,  nerve regeneration. That whole side of my head has been numb since surgery, yet I feel pain.  So I'm not really sure if it's because I'm coming of the meds or my nerves are healing.  I many never know.  I do know that "brain itch" is still part of my life almost daily and could truly cause a sane person to loose their marbles.  Imagine 1000's of ants crawling under your scalp, all over your head and face, that's brain itch.  The only thing that seems to sooth it is heat.  I've become very friendly with my magic bag.

I'm preparing for an upcoming busy week.  Back to the eye clinic, who will hopefully lessen my prism strength.  Even though you have an appointment there, you need to prepare for the entire afternoon.  It's an odd place because everyone waiting there has vision issues.  So not to many people are reading obviously, and everyone is doing the same thing....people watching.  Lots of fun but can make for some awkward moments.

I also have a massage appointment to try and fix this neck pain I'm still experiencing from having my head tilted for so long.  I'm trying a different type of massage, as all the others haven't seemed to helped.

Then we are off to Dr Mulroy a Radiation Oncologist to discuss possible radiation treatment.  My Neurosurgeon recommends it but I want to hear what he has to say.  Apparently since I'm so young (41) and I still have a brain tumour, radiation might help to "delay" it's growth.  We were told that radiation doesn't shrink a tumour but rather stop it from growing.  Huh, who knew?  I guess we will find out more on Tuesday.

All of these appointment and new information given, wipes me out.  At the beginning of my recovery I couldn't sleep.  It was like I was afraid to sleep or just didn't want to miss anything in my recovery.  Now it's all I do.  I'm exhausted all the time.  I do, however, acknowledge that I am starting to do a bit more.  Laundry, sweeping, washing floors, even trying to weed my sad flower beds.  These activities prior to brain surgery would have all been done in one day after working 8 hours.  Now, one activity equals one nap.  I've stopped fighting it and surrender to my body's need.

I've come to realize that the brain is so much more then the main computer of the body, it is the body.  I always thought I had some control but the truth is I only have influence.  If the body wants to grow a tumour, it will, if it wants to get arthritis, it will, if it wants to get into perfect shape, it will.  The only thing we can control are the influences, smoking, drinking, going to the gym etc.  And even with all these influences both good and bad, the brain will end up doing what it wants in the end anyway.  I asked T Jay one day, "if the brain is so smart then why didn't it tell me I had a brain tumour" and he simply said "it did"  Hmmm, I pondered that for a few days, and thought yup he's right it sure did, I just wasn't listening.  So now I call him "Smarty Pants" you can decide if I'm referring to my brain or T Jay :)