Sunday, June 9, 2013

another summer

A year ago
we were in the middle of
the summer of trouble

the water in our well was resisting treatment
I lit scented candles every time I had to run the water

our "good" vehicle chose to die

we were waiting to travel to Saskatoon
to meet with a neurotologist
to discuss treatment options
needed a reliable vehicle to get us there
and back

I was also trying to plan a trip south to visit my mother
battling her cancer and lung issues

problem built upon problem
upon problem

we were all sharp edges
brittle
ready to crack, burn

we stand now
on the edge of another summer
with a newer vehicle
clean water
five months post gamma knife
my mother's struggle over
as she found peace in April

my ears are ringing, yes
my hearing no better than before
but not worse

we have plans, big plans ahead
and hope

another summer
and we can see the colour 
the rains have left behind

Friday, February 15, 2013

3 weeks and a day

Time moves so quickly lately that I am surprised that it has only been three weeks and a day since my gamma knife treatment.

The spots where the frame was attached to my forehead look like little dents.  There is still inflammation that makes the area around them feel like little hills and the tenderness remains.  The spots on the back of my head feel a bit crusted (like a bad case of dandruff) and I am reminded of them with passing pain each time I lay my head down.

Tiredness comes and goes unpredictably as does a vague sense of vertigo. Headaches appear out of nowhere but happily vanish just as unexpectedly. Many times I feel perfectly healthy and energized.

The past few months I've been struggling with hot flashes that had all but disappeared for years.  I am not sure that they have anything to do with the brain issue or perhaps hormones again out of whack due to my intentional weight loss.  I scheduled a time to talk with my nurse practitioner in early March to investigate.

Three weeks gone, the journey continues.

Saturday, February 2, 2013

Raised eyebrows

Amazing how many muscles we use when we talk
some for speech itself and others for expression
I'm aware of this now. 
I feel discomfort each time I raise my eyebrows.  
The screw sites on my forehead are healing well, but still swollen and tender.
The two spots on the back are crusty and healing as well, and yet...
my entire scalp feels a bit off, scratchy and sore all over
the top of my head in particular.
From what I've read I don't think this is unusual and should calm down.

Until then, if my expressions seem a bit flat, don't be alarmed
I'm merely seeking to remain as comfortable as possible.

Wednesday, January 30, 2013

One week later...

I sit tonight, at home in my easy chair
happy to know that a gamma-knife treatment is no longer waiting around the bend
instead it is already six days behind me

Thursday started with a 4:15 wake up call giving us enough time to catch the 5:15 shuttle from the hotel to the hospital.  There were three of us scheduled for treatments all for different reasons and we were given beds in comfy cubicles separated by curtains.  An iv line was started in my hand in preparation for the MRI contrast solution; a local numbing ointment was rubbed on my forehead and my blood pressure was recorded. It was surprising low/normal considering the circumstance. Rick was at my side until the next step.

The next step was the attachment of the head-frame.  The nurse sat beside me on the bed, holding the frame in place while two doctors began their work.  Strange bars were inserted in my ears to help steady things, making it almost impossible to hear.  A second nurse was asking me questions but I couldn't quite decipher what she was saying.  I didn't know if the bars would remain in place, but after receiving injections of anaesthetic the screws were placed and I was relieved to have the bars removed from my ears. 
As the screws were being tightened the nurse beside me held my hands and everyone warned me that things would begin to feel very tight and I should expect to feel a lot of pressure.  Well warned proved to be a help and soon the doctors stepped back, said they were finished and noting that I did very well.

Next step, was a wheelchair ride to the imaging room, wrapped in heated blankets where Rick was again beside me.
A box was fixed in place over the head-frame before the rather brief eight minute MRI and removed immediately after. Back to the gamma-knife area where breakfast was waiting for me and coffee, much desired coffee.  But first the nurse needed to take measurements of my head.  To accomplish this with the accuracy needed another attachment was placed on the head-frame.  This one was my favourite, I alternated between feeling like Elroy from the Jetsons cartoon show or someone getting their hair dried in an old fashioned salon.
I drank my coffee through a straw, nibbled a small waffle and sausage and waited.  I don't really know how much time passed.

Just as Rick came back with a second coffee it was time to move into the room where the gamma-knife machine waited for me.  On my back on the table, with knees propped up on two heated pillows, the head-frame was fixed in place, the nurses attempted to make my neck as comfortable as possible and I willed my muscles to relax.  I was told my treatment would take approximately one hour and could hear the CD I had brought with me playing as the table slipped into the open doors of the machine.

The radiation is painless and silent.  This would have been a breeze but my back which had already been tense with muscle spasms for the past week rebelled no matter what position of comfort I attempted to find.  I turned my knees from side to side and the hour dragged on.  Finally bells rang, lights flashed, the table slid back out and the machine doors closed behind me.  A nurse and doctor walked in to tell me they were not quite finished, I had to be re-positioned for another six minutes of treatment.  My back screamed at having to move, easing up under the nurse's massaging hands.  She allowed me to walk around for a few minutes and then it was lock down time again.  Six minutes more, only six minutes more.

This time the bells and flashing did not surprise me.  The same nurse and doctor helped me sit up and removed the head-frame.  Some people have immediate rebound headaches when the pressure is removed but I was spared that discomfort  The screw holes were treated with ointment and the two on my forehead were covered in small band-aids.  It was over.  Nothing left to do but relax, let them watch me for a little bit, give me follow-up instructions and wait for the shuttle back to the hotel.

So, six days later
the swelling is all but gone
I'm a bit more tired than I'd choose
screw sites are tender and it hurts to lay my head down
but no headache the last couple of days
my back pain is less constant and I'm back to my exercise bike
pedalling until the endorphins flow

Wednesday, January 23, 2013

Inhale

Inhale.
Exhale.
Inhale again.
Reminding myself to keep breathing.
After waiting for longer than I would have chosen
I am now only hours away from my consult with Dr. Kaufmann.
I'm hoping he can show me pictures of my MRI.
Soon I will know if I am to get a treatment tomorrow or pursue a different course.

I have been searching, reading, praying.  There is yet much to learn.

More to come.  Always more to come....

Sunday, January 20, 2013

Wishing time away

Time is precious, a commodity we have in a limited amount.  I usually attempt to make the most of each moment, hour and day, squeezing out life, light and love.

Sadly, today I find myself wishing time away as I wait to meet Wednesday with the neurosurgeon who is the co-director of the Winnipeg GammaKnife Centre.

My consult is on Wednesday with treatment tentatively scheduled for Thursday. I have so many questions waiting to be asked and the uncertainty rattles around in my brain, dancing with the endless ringing in my ears.  Will he decide I am not a good candidate for this type of radiosurgery?  Will he suggest something more invasive or a wait-and-see approach?

I continue to pray for the ability to swap my concerns for a sense of expectation and curiosity at what God will accomplish through this journey, knowing that He indeed has the ability to create order from chaos, beauty from ashes, and work all things into good for His Kingdom.

And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose. Romans 8:28 NIV

Yes, I have often prayed for patience, and now the lessons come...

Thursday, January 17, 2013

Coincidence? Likely not...

Image found at http://www2.le.ac.uk/departments/gradschool/training/events/caferesearch/cafe-brain

As next week's consult and treatment draw ever closer it seems that talk about brains and neurology are popping up everywhere.

A new television series is centred around a neurosurgeon.  In the preview episode his boss handed him a pair of baseball tickets.  When he questioned their source she told him "They're a gift from your acoustic neuroma patient." Impaired hearing aside, the words rang clearly.

A blogging friend Jennifer at Getting Down with Jesus just re-ran a post from a year ago about new cowboy boots and waiting for MRI results and a neurologist's appointment that shared good news.  I sent her a message asking if they had been looking for an acoustic neuroma, letting her know that I had not receive the same good report.

News and science shows seem to be talking more about brain scans... Is this coincidental?  I think not, it is more likely that I am just highly sensitive to what I would have ignored before.  In our selfish human way, we seem to pay attention only to those things that concern us.

So I guess I'm more concerned than I'd like to admit.  Have to stop hiding that.