Runaway Train

Sometimes I feel like my brain is a train traveling on a track.  Going so fast; it can't possibly stop. Random images pass the windows of my mind like blurs.  I try to catch them but they are traveling much too fast.  Thoughts I want to grab hold of and think through to completion, if only the train would slow down just for a little while.  It's just moving much too fast.

Today I am reclaiming my blog as a means to collect my thoughts.

We have dedicated the summer of 2016 to slow.  Well I did.  My family seems to be falling in line with my thinking.  I am sure they don't really care and John will enjoy the break. I am not sure what that means for BLACKberry Fields long term but this year it means no roasting chickens, no pigs. No stringing fence and counting cows for other people. No bottle feeding orphan lambs.  Good thing my brother-in-law and sister just opened the new butcher shop in town right?

I want to focus on reclaiming our home.  Getting rid of the clutter and unnecessary things we have collected over the years. We have too much stuff.  To many things to crowd our space.  I find it suffocating.   I long for simple.  Perhaps simple will help quiet my mind.

I started when John's Dad moved out for the second and final time in a year.  Never again will I be displaced from my bedroom.  Our space.  Never again will I disrupt my family and our home.

We have started reclaiming our yard.  Last summer our goats left.  Energy, time and money forced us (me) to sell our small herd.  Though I can't say I regret the experience because I truly loved having goats, there was a significant amount of loss.  Our family really can't deal with much more grief.

This summer we have laying hens and ducks.  I am satisfied with that.  I can work on my gardens as energy allows because lets face it that's where I am truly the happiest.  My hands and feet in the cool earth.

WE can continue to clean up the yard and what the goats destroyed.   Replant some fruit trees.

 Slowly we can reclaim John's shop and the trailer.  Perhaps build a harvest table.  He can remember what he use to enjoy.

Sending love and light from the hill.

Today I needed to write

Every now and then I feel the overwhelming need to write.  Word vomit everything that is currently stirring around in my brain.  Someday I plan to really write.  Put our entire story into print but for now I just need to unload.

June 2014 marked my three year post Gamma appointment.  It was suppose to be the appointment that told all.  Was I going to actually be AVM free?  John and I arrived as usual early in the morning.  I had my MRI and was promptly seen by an unknown Neurosurgeon.  My regular surgeons were both absent.  He told me basically nothing.  They still couldn’t see the AVM because of my “Gamma Footprint”.  He suggested that I follow up with a cerebral angiogram but we agreed it could wait until year four.

I left the appointment feeling somewhat defeated.  This new team member couldn’t answer any of my questions.  He had no explanation of why I feel so poorly.  Why my bad days out number my good.  It felt like a waste of a trip.

A couple of weeks after that appointment I received a referral to a different vascular neurosurgeon at a different hospital.  The mystery was who had sent the referral in.  It wasn’t the Gamma Clinic.  It wasn’t my family physician.

It took a team effort but we discovered it was Dr. C, one of my original surgeons.  The question remained why.  I had not seen him in almost a year.  The answer came six months later in the form of an email from his assistant.  (Not kidding.  She must have been really busy).

“The reason for the referral to the Neurovascular clinic was because the last MRI you had said that the AVM was gone, so Dr. Cusimano wanted to confirm that with an angiogram.  The angiogram should be done at St. Michael’s.”

Well that’s ironic.  I was told it couldn’t be seen because of the footprint by the new guy.  I actually called him on the phone to confirm that.  Besides I can still hear it. 

Now don’t get me wrong.  I want the little monster gone but there seems to be some conflicting information.  I decided ultimately to wait until the four year mark to have a MRI and angiogram at the new hospital and new doctor.  I don’t really feel up to having anyone poke around in my brain right now.  Thanks but no thanks.

Let’s talk side effects. 

John tells me I have more bad days than good ones.  I believe him because he is my memory. 

I get the basics done.  Feed animals, do the laundry, try to feed the family.  My personal care suffers sometimes.  I try to keep medicated.  It’s worse when I forget to take my meds, as to be expected.

It’s not that I don’t want to do things.  Sometimes outside forces get in the way (I will tell you about that in a minute.)  Sometimes the sheer amount that needs to be done is too overwhelming and I get stuck.  You know?  I would rather do nothing than take on the challenge.  Sometimes I am simply too exhausted.

I sleep a lot but it’s never enough.  My sleep is broken into tiny chunks of time.  It is rarely restful.

The more tired I am the more side effects I have. I end up stumbling words, talking nonsense, hallucinating and have lots of tears.

One of the most important things I was told when I was diagnosed with an AVM and subsequently diagnosed with a brain injury post Gamma was, “You must control your environment.”  That’s great in theory but not so easy to practice when the universe keeps screwing with us.

How you ask?  Let me give you a condensed version.  I will save the rest for my book.

At the beginning of the school year one of our children was threatened daily by another student.  He told her the details for how he planned to kill her and stalked her around the school for 10 days.  When he was confronted he claimed she was harassing him.  He was quickly discredited, disciplined and allowed to carry on as if nothing happened.  I spoke to the school, the school board, police, therapists, counselors, and a lawyer almost daily for eight weeks.  In the course of a couple of weeks our daughter became a statistic and had to learn to navigate the world differently.  It shouldn’t be that way but it is.

We had to put our beloved dog Spirit to sleep after suffering for more than a year with a brain tumor.  She and I shared anticonvulsants for most of that year.  Her last day was spent eating too many cookies and going for a huge walk with the kids and I.  Her ashes keep me company in my office.

We have a farm!!  There are lots of joys of owning a farm but it’s also a tremendous amount of work.  Chicken, cows and pigs all had to be sent for processing.  Customers are always coming and going.  Daily chores.  Weekly chores.  Picking up feed.  The end of the season chores that never really ever get completely done but we will wish in the spring they did.

In November wee Moose died.  He is the reason we have goats.  The little goat we welcomed into the world in February 2013 who wouldn't have survived without John’s intervention.  Moose had a deformed hind leg, a grade V heart arrhythmia and was given the life expectancy of a week.  Well he proved the world wrong and we all fell more deeply in love with him.  His loss was painful for all of us but especially John.

Speaking of John keep in mind he works full time away from the house and teaches Karate two nights a week.  He is the grocery shopper, the driver, the errand runner.  He is an only child with no siblings to rely on and my only constant support.

Because our life isn’t exciting enough we took on renovating three bedrooms and working on the final stages of completing our family room downstairs.

I also decided to start a small home based business because… I have no idea.  It seemed like a good idea.

On Christmas Eve John’s Dad was admitted to the hospital.  He spent a couple of days but he probably should have never been released.

I went through Christmas on autopilot.  I remember almost nothing.

On December 28^th my own Father was airlifted to an Intensive Care Unit in a city about 1 ½ hours away with complications of pneumonia.  For two weeks we weren’t sure what the outcome would be.  At four weeks he returned home and is slowly recovering.  He and my Mom are discovering a new normal.

While he was away everyone in our house became sick with a never ending cold.  It just cycles around and around.  Maybe it’s because we were hanging out in hospitals so much.

Did I tell you that two of our children just finished exams?  The other one missed a week of school because of this dreadful cold?

Did I say that our son has decided to take charge of his education and do some major self advocacy?  As I have always been the one to advocate for him this role reversal is very scary for me.

Did I mention our goats are all pregnant and Lizzy had a miscarriage last Sunday? 

In the meantime John’s Dad was rushed by ambulance back to the hospital on Monday where he still is today.   

John has been juggling all his own responsibilities as well as looking after his fathers.  Only to add to his stress I had a small nervous breakdown.  Not because I chose to.  I like pretending to be strong.  I fell apart because one can only be so strong for so long without losing it.  My brain injury supports this hypothesis. 

On Tuesday night John tucked me into bed before he left for the night and told me he needed me to be okay.  He needed me to stay in bed, sleep away the pain and just be okay.

Today I am. 

The pain has lifted a little. 

I can think clearer. 

I needed to write.

Apathy

Apathy is defined as a lack of feeling, emotion, or interest. It is a state of indifference, or the suppression of emotions such as excitement, motivation, and/or passion.

It is also one of the most challenging things I struggle with daily. A lingering side effect of my brain injury. 

It is fleeting. I could be super excited to do, create or make something but when it... comes time to actually execute the plan I am stuck. I want to but I really can't. I am physically unable to carry though without support. I need a cheering section to keep me motivated and on task. My cheering section isn't often here.

Having a small working farm/homestead forces me to get out of bed everyday because I have animals waiting for me. They don't prevent me from returning to bed by noon though.

I use to be super excited about my perennial gardens. That is what actually prompted this post. I was looking at flowers on Pinterest.

I took pride in my extensive gardens and they were beautiful. Were is the key word. The last few years I just couldn't. I start, then I can't follow through. In the grand scheme of things on a farm, the perennial beds are very low priority. But they bring me joy.

I want to garden again. I love gardening. Alone. Without support by reluctant volunteers.

 

Maybe this year.

An anniversary of sorts

Here we are at the four year mark.
The headache that determined the course of the rest of our lives.
Hearing the fear in both Dr Fiddler and Dr Gammons voices.
The secrets and the faking it through the holiday season and beyond.
The beginning of test after test....
The beginning of having doctor after doctor shocked that I survived three births without having a stroke.
The beginning of having to explain over and over again the impossible to everyone.
The beginning of the catch phrase, "ticking time bomb."
The beginning of preparing for the worse and hoping against the odds for the best.
The beginning of many untruths.
The beginning of "new normal."

The only thing that has been consistently solid is my five and for them I am grateful.
My family looks different.
My friends are different.
I often completely forget about my three years at CLHC and skip back to OEYC and the relationships that got a foot hold there.
My short term memory is not intact. I'm missing some (many) of the details but it's easy to remember how people have made me feel.

Closing a Chapter

When I started this blog I did it with the intention of keeping my family and friends current on my medical situation.  It was going to be my online journal.  I also thought it would help raise AVM awareness.

What really happened was people no longer had to actually communicate with me or John because I laid everything out so nicely here on the interweb.  People who I thought would be by my side always made light of the severity of my illness or disappeared completely.  Others did not and for them I am eternally grateful.  I have also made some wonderful new friends along the way.

So though I haven't posted in some time I decided it was appropriate to have a final entry.
It has been two years since I received Gamma Knife Surgery.  My AVM is still active.  I am still at risk of stroke.  I have permanent brain damage from the radiation and a seizure disorder.  I no longer drive.  I no longer work away from home.  WE have HHT.

My friend Rachael has a sign at her farm that reads;
"When life hands you lemons trade them in for goats."
That's exactly what we did.
You can follow our adventures in farming here.

Sending love and light from the hill.

Stephanie

More late breaking medical news...

Last Sunday we left our cozy home on the hill at 4am and drove three hours to Toronto so Brenden could have his annual MRI.  The purpose of the MRI is to monitor the lesions (yes more than one) in his brain.  Of the three known lesions there is one "of interest" in the left frontal lobe.  The same place my AVM aka Monster lives.

We spent the rest of the day being silly at the Science Centre, eating good food, playing in the arcade and swimming in the pool at the hotel.  By the time 9pm hit all three children were exhausted from our very early start.

On Monday we met with a Neurosurgeon who needs to consult a Radiologist to look at the MRI (Brenden's brain) closer and discuss their findings.... He is suppose to call me by mid February to discuss the results. If he forgets to call me then I should call him.  Yes, he really said that.  The best part of that particular appointment was Brenden playing "games" with the Neurology Fellow during his assessment.  He is also being scheduled for an EEG to check for the possibility of seizure activity.

Next stop of the day was the Chest Clinic to meet the doctor who will be testing our family for HHT.  If you want some quick facts about HHT click here.  I have already have been examined at a different hospital in the quest to find other AVM's or telangiectases.  I, thankfully, did not present any more than the one in my brain.  Brenden is known to have one in his nose and one in his mouth.  His heart is clear.  We know that because his cardiologist did an echo bubble study before heart surgery last spring.  His lungs should be X-rayed though we never discussed that... Not to self - make that happen sooner than later.

I think it safe to assume that Brenden and I do have this genetic disorder. Brain AVM's are extremely rare.  For both of us to have one without HHT would be extraordinary.  HHT is uncommon but not rare.   Telangiectases are basically an abnormal connection between small arteries and veins.  They can show up anywhere in the body but are most worrisome in the brain and lungs because if they rupture they will cause stroke or death. 

After answering endless questions at the Chest Clinic we were sent to the blood lab. They will first isolate the markers for HHT in Brenden and I then look for the same marks in the girls. Their blood has been banked for the occasion.  If they do not have it then their children will not inherit it.  If they do have HHT then their children will have a 50% chance of also having it. And so on and so on.

Every family with HHT is unique and it often goes completely undiagnosed generation after generation.



So what does all of this really mean?

More waiting. More questions. More living.

Sending love from the hill.

Steph

two of 52

John returned to work after two weeks home.
All three children returned to school.
I slowly begin to tame the chaos of our home.
I have grand plans to start taking better care of me. 
Not side effect management but real, genuine care.

Here's a snap shot of week 2 of 52.

We have restored bedtimes routines that include hang man and shadow puppets.

 

 

 

The cats are frisky and mischievous being stuck indoors. 

I often find them sitting on stools at the island watching me cook.  Weird.

 

 

We have an extra friendly squirrel that regularly taunts the dogs.

 

 

I continue to prepare real meals with real food which we eat at a real table. 

I am continually surprised that this is not "normal" for some families.

 

 

 

 

We took an "educational trip" to the Science Centre with

typical Black Family twisted sense of humor...

 

 

 

We enjoyed the pool all alone.  That never happens here.

 

 

 

And as always -

More waiting.  More questions.  Few answers.

 

 

 

 

Sending love from the hill.

 

Steph