Dropping an acronym and other medical news...

Wednesday was clinic day for both Brenden and I.  I had postponed both of our appointments to July to help ease some of the craziness surrounding the previous month. John and I have the trip down to a fine science as our confidence grows regularly travelling to, around and from Toronto.  Who knew?

This week we are pleased to share that B is no longer a heart patient.  Ablation surgery has been considered a success and the chance of an accessory pathway in his heart reoccurring now, four months post op, is extremely rare.  He will have an ECG at the one year mark to confirm but at this point we can confidently say he no longer has Wolffe Parkinson White Syndrome.  Thus dropping WPW from the long list of acronyms that follow our names.

It has been absolutely amazing to watch this young man change before our eyes.  He has become so much more active, strong and confident since surgery.  We are very proud of him.  We celebrated with a cake.

My Neurology appointment marked my one year anniversary of Gamma Knife Surgery.  Dr. S was positively beaming when he seen me.  As I'm sure I have mentioned before the goal of Gamma is to destroy the AVM.  It appears to be working therefore the clinic can claim success.  The draining vein is occluding and eventually will seal off completely destroying the AVM.  When the AVM dies  my risk of stroke diminishes.  That's the good news but it's hard to get too excited about that when my quality of life has been altered significantly.

When I asked the countless questions on my mind I always received a variety of the same response.
"I don't know...."

Why am I losing my vision in my left eye? 
Why am I still having so many seizures (daily in varying degrees)? 
Why are they changing from partial focal to absent? 
Why are the seizures starting to cross the mid line? 
If the avm is starting to occlude then why can I still hear it?
Why am I still experiencing asphasia?  (communication problem NOT intelligence)
Why do I have episodes of muscle weakness and loss mobility on my right side? 
When will it start to get better???

"I don't know." Dr. S

Is there going to be permanent brain damage?   Sadly, yes from radiation.  Approximately 1 cm around the AVM in my left frontal lobe.  How significant, we don't know.  Once brain cells die they can not regenerate; it's forever.  Yet the brain has an amazing ability to make accommodations.  Will the seizures ever stop?  We don't know, hopefully.  We are optimistic that they will be better controlled by medication eventually.

In the mean time I have been instructed to keep in touch via email and to control my environment to help diminish the severity of my symptoms. There was no discussion about getting my drivers license back. For those who keep telling me to be optimistic about that I'm asking you to start being realistic.  Will I be looking for a new job anytime in the near future? No.

Next step:
Genetic testing for HHT.
But first I am going to enjoy the summer with our children.

Balance - Stephanie VS The Monster

There is so much I want to do.  There is so much I need to do.
We are building our farm, BLACKberry Fields much quicker than I ever imagined. 
The timing was right and we have to go with it.
I am organizing and reorganizing a household with three very busy children.
The month of June has been absolutely insane.  Maybe thats why I feel like I am struggling so much.
I am trying to help John with his ever growing business, John Black Carpentry
I try but sometimes I'm not very successful or helpful.
When I work hard and complete tasks it gives me a great sense of accomplishment.
My soul and spirit needs that.  My sanity needs that.
After several days of success I can be guaranteed several days of forced rest.
Balance

My monster has its own, very different agenda.

It likes to keep me awake with a constant woosh in my head.
If it doesn't get my attention right away it only gets louder.
It limits the use of my right arm and sometime leg so even small tasks take so much longer.
At times it makes it difficult to read, focus or string a sentence together.
Sometimes I can hear a person talking but I don't comprehend the words or their meaning; as if they are speaking in a different language.
It is a constant dull ache on the left side and sharp stabbing pains the right side of my brain.
Just when I think the monster is at rest is rattles my body with a seizure or quite literally knocks me out for a few hours.
Balance

This week is my one year anniversary of Gamma Knife Surgery.  Yesterday I had another MRI to get some good images of the AVM/Monster.  We are looking to see if the edema has dissipated and at the integrity of the vessels running to and from the AVM.  Regardless of what the images show and the prognosis, I know how I feel.  I'm just looking for the balance.

Redefining my role

I have a restless soul.  I am rarely at peace with myself.  I would to like blame it on the monster but that would be a lie. It is simply who I am.  Having so much time alone in my head just heightens my awareness. I recently find myself circling.  Thinking a little too much.

Metaphorically, I have never been one to sit around and watch paint dry.  I'm always ready to start the next project.  I never sit back and admire my work. Relishing in success.  Patience has never been my strong suit as I always continue moving forward - dreaming, planning, creating, doing.

When my babies were small I didn't just babysit. I ran a home business and a very successful community playgroup.  Always needing to do a little bit more.  That role led me to a career working with families.

I have volunteered countless hours, sat on boards and worked for and with several non-profit agencies.  I was never just an employee though.  I had to know everything.  If I was going to attach my name to a position I was going to excel at it.  Be an expert.

I have always been a student.  In fact, this is the first time in my adult life that I have not been actively enrolled in school.  No papers to write, no assignments to complete and no exams to study for. No professor to sign off on the A+.

This is also the first time in many years I have not been an employee.  No time lines, deadlines or accountability. No performance appraisal to tell me I'm on the right track and doing a good job.  It is a odd feeling.

As I circle inside my head I wonder if my drive, determination, need to succeed has led me to this moment.  If all the hours I have invested into others in my community has taught me the skills I will need to be successful - in my recovery and here at home.  If this has been the bigger plan all along?

I need to to continue to heal.  My seizures are still active but strangely I am getting use to them.  I budget time for them and my recovery everyday.  My new normal forces me to stop - literally.  Patience is a must.  I can't rush recovery.  The monster has it's own agenda and I'm not privy to it.

We are building a homestead and creating a plan for sustainability. There is always much work to do. Research, planning, doing...

As I continue to circle I will redefine my role... figure out who I am.

Letting go...work

In an attempt to gain some control in my life I need to make some changes.  

I handed in my resignation at work.  I didn't have to.  I chose to.

I have been on a leave of absence since the monster in my brain took hold, rattling it regularly with seizures.  I had planned to go back once things settled down medically but I had a moment of true clarity.  I realized that as long as I had a timeline of when I was to return I was going to remain unwell.

As a Social Worker I have never left work and simply flipped the switch and forgot about every  interaction I had through out the day.  Maybe some do - I do not.  Every person I have ever worked with has had an impact on me.  I think about them, their needs, their dreams, how I and we as a community could do more.   Core competencies, best practice and developmentally appropriate are a part of my regular vernacular. Talk to me sometime and you will know this to be true.

It is ridiculous to believe that while I was on a leave of absence that I stopped caring about the people I have supported.  That I was unaware of what was happening in my own community.  When you live and work in a small town everything is under a microscope.  I didn't seek out information; it was either completely visible or brought to my attention by a concerned community member.  So though I was away I continued to care, have opinions and advocate.

Now I choose to hand back that responsibility and privilege.


 
A reminder from my Inner Pirate...

The swelling in my brain has left me with temporary aphasia, a communication disorder.  
It does not effect my intelligence.
Don't talk to me, at  me or about me like I am stupid.
Furthermore, I remember what confidentiality and in confidence means and I still practice it.
I wish the same respect be extended to me.

Patient update

AVM's are considered congenital, we are born this way.  In extremely rare cases Hereditary Homorrhotic Telangiectasia (tel-AN-jee-eck-TAZE-ee-ya) or HHT. 

In July 2011 I was referred to a doctor who researches HHT at St. Michael's Hospital in Toronto.  Given I have an AVM in my brain, some unexplained deaths and other members with AVM's in my family it was deemed necessary.  While at my day long appointment I had several tests searching for more AVM's in my liver, lungs, extremities and heart.  Though no more AVM's were found, during a ECHO Bubble Study they found something wrong with my heart.  Since then I have been under the care of a Cardiologist.  For eight months I have had several tests investigating the possibility of having Cardiomyopathy. 

Yesterday was results day.  I am very pleased to report I do not have it.  Happy dance!!!!  I met with my Cardiologist and he told me that during rest the left ventricle of my heart beats at the lower end of normal.  During activity it beats normal.  He told me I rocked my very awful fitness challenge.  You know the test where I rode a bike, sideways, breasts exposed, having an ultrasound with a cheering section present.  Fun times.  My heart muscles look healthy according to my MRI, the gold star in imaging.  I have been discharged from his care.  Deep cleansing breath. 

HHT testing continues.


Next stop of the day was to spend some quality time with my Neurosurgeon.  I had an appointment with Dr. S but my Neurologist Dr. C decided to join us.  Wow -  two members of my team giving me there undivided attention.  I thought for sure I would have the answers I desperately need.

Be warned this is were I begin to struggle. 

Though I am experiencing regular seizures, joint stiffness or weakness, confusion, vision loss, loss of speech etc etc etc  Dr. S is thrilled.  He believes that treatment is working.  Maybe, just maybe, my AVM is even gone already!  Of course we won't know for certain until we see my brain again in June, but maybe.

Now don't get me wrong if my AVM atrophies and is completely gone that's great. Less chance of a  homorrhotic stroke.  Right?  But when I questioned them further about my seizures and other side effects they seemed a little puzzled.  When I asked them about alternative measures to reduce or eliminate my side effects I was told to continue taking my anticonvulsants and maybe within time we could try and wean me off them and see what happens.  Those would be the same anticonvulsants that are not working now.

Thus lies my frustration.

My doctors measure success by the prospect I will, in time, be AVM free.  Therefore, their treatment plan was successful. Yeah them.

I measure success by the quality of life I am going to live post AVM and Gamma.

Next stop.... Naturopath.  YES, it's true :)
Now that's something I truly am excited about. 
Someone who will treat all of me;  not just my parts.

Sending love from the hill xo

Listening to my body

As a woman, mother, wife and employee I have often pushed past discomfort, pain and exhaustion to get just one more thing done.  My body was trying to tell me to slow down, take a break, STOP but I often didn't listen - if ever.  The constant pressure I put on myself  to do and to know often left me feeling grouchy and tired by 7pm.  But I never listened.  I carried on.

 My AVM diagnosis interrupted my life and the side effects of treatment has left me "disabled" or differently-abled. I was forced to start listening to my body or immediately suffer the consequences.  I still have much of the same drive and determination I always did but I now work on my bodies timetable.

Instead of eating what ever, when ever I have to plan my meals.  I rarely if ever feel really hungry (a side effect from my anticonvulsant) but my body needs good, whole foods to decrease inflammation in my brain and help me heal.  I can no longer eat wheat and most dairy because my body doesn't tolerate it well.  I'm not following some weird, quirky trend. I am listening when my body tells me it would rather have yummy left overs for breakfast than sugary cereal.

I have always been a morning person.  I have always enjoyed going to bed fairly early.  I like sleep.  Now I have to do as much as possible before noon or it will not get done and my list will grow. I have to schedule appointments and telephone calls early in the day or risk not being able communicate my needs.  Now I have to rest or sleep in the afternoon or I will not be able to function through dinner.  Now I always sleep when I am tired because I am listening to my body.

I love exercise and fitness classes.  I know you are thinking, really?? No it's true, I do.  I loved being a member of the gym, taking dance and yoga classes.  I love walking, hiking and swimming.  My body feels wonderful and alive when I am done.  My truth is I rarely made time for those activities because I had scheduled myself too tight during the day and I felt guilty leaving my family in the evening.  Now I have tons of time during the day but less freedom, money and energy.  I can't even safely walk the dogs or go snow shoeing alone. Evening classes would be a disaster.  What I do have is a computer, DVD player, space, yoga mat, weights, running shoes.  In order to listen to my bodies needs I workout every morning before 9 and feel fabulous for it.  If I can drop a few pounds in the process that would be great but it's not the goal.

Pain is bad.  If I am feeling pain anywhere it means I need to stop and listen to what my body is trying to say.  I can't mask pain and carry on like I use to with over the counter medication or I risk having a stroke.  So now I listen and the pain will subside with ice and sleep.

Listen, always listen, to what your body is telling you.  Your body knows what it needs. 

If I only knew and the conflict between two minds...

I want to start my post by saying that I never intended this blog to be everything AVM.  I usually have many opinions that I like to share on lots of subjects.  I once considered myself an expert on many things.  I thought I would write about those things.  As it turns out the monster who lives in my brain, aka the AVM, rules my world.  This is not my choice but my new normal.

My Mom recently asked me if I knew then what I know now would I have chosen to have Gamma Knife Surgery.  The answer with out a doubt was - No, never!  I wish I never knew.  I wish I could have continued to live my life as I was. I wish I had my life back. I wish to live seizure and side effect free.  I wish for simple. Gamma was my only option besides do nothing.  I was reassured that it was safe and side effects were rare.  I was assured I could return to work as normal after 48 hours.

This has not been my experience.  I am currently waiting to hear from my Neurologist.  I need answers that I hope he can provide without me traveling to Toronto.  I am emotional, tired, angry and continuing to have seizure activity.  I didn't sign up for this.

My friend Melissa reminded me this morning that my side effects could indicate that the treatment is working.  I needed to hear that and I thank her.  It has put things back into perspective a little.

I chose to have Gamma because doing nothing was not an option.  I don't want to have a stroke and risk dying at 36.  I watched close up what it was like for three boys to lose their Daddy and his Wife and family struggle to carry on without him.  I don't want that for John or my children if I can do anything to prevent it.  I want to help raise my young family, even if it means I have to do it differently.  I want to live a productive life even if it is not the life I originally chose.

Today I choose to make peace with my side effects.  I will take them as they come.  I will cope the best I can.  I will continue to self advocate and ask questions.  I will call my Cardiologist and actually acknowledge that something is wrong with my heart.  I will continue to ask for and accept the support and understanding of John, my family and friends even when I make it hard.   I will try to remember that my children are just that, children, and they will not always be sympathetic to the situation and that's okay. I will continue to heal on my monsters time table.

Stephanie

Crafty me

I have been hanging out in the right side of my brain more and more lately; exploring my creative side. My left, logical side, is on strike.  I have always enjoyed crafting but never really set aside much time for it. When I am making something I don't have to think beyond what's in my hand and the next step. There are not going to be any repercussions or consequences of my actions. If I make a mistake or get frustrated, I can stop and try again later.  It took four attempts to crochet my first hat.

Last Saturday I participated in a local Christmas Bazaar - as a vendor. 

 BLACKberry Fields display
West Guilford Community Centre, Christmas Bazaar

.
Talk about stepping out of my comfort zone.  Though I have received positive feedback, from my friends and family about our preserves and my "Tied by Me" fleece blankets, it's completely different to put myself out there for the public to see and critique.  Add the fact that I have regular seizures, that are  induced by sensory stimulation.  Seizures that literally leave me speachless.  Thankfully my Grandma was willing and able to come sit by me through out the day, just in case.  (She also taught me a new crochet stitch :)

The bazaar was a success.  I sold many preserves and blankets.  Took orders for Christmas gifts.  Got ideas for new projects. Talked to many people without stumbling with my words. Most important, I gained the confidence to do it again in a couple of weeks.

Life Interrupted

 

On Wednesday we drove to Toronto to meet with my neurosurgeon.  As expected he prescribed an anti convulsent to stop my reoccurring seizures.  As expected I need to take some time off of work to get my side effects under control.  As expected I have to go back in a month for another MRI and consultation to see if my brain is swelling.  Then my neurosurgeon told me that he is obligated to tell the DMV about my seizures and I can expect to lose my license for at least six months, maybe longer.  Completely unexpected!

You may be asking yourself why this is such a shock.  I have been told time and time again by friends, family and acquaintances that I would lose it; after all I am having seizures.  However, both my family physician and an emergency room doctor told me that I could continue driving because I remained conscious and aware throughout every partial seizure.  I trusted that as the truth.  My neurosurgeon believes that this is the beginning of something much bigger and it is simply not safe for me to continue driving.

It has taken me a couple of days but I am starting to work through some of the anger.

Up until this point I have been scared but never really angry.  I deal with things as they come.  Put on a brave front, take the information in, process it and continue to carry on.  John and I both have a great sense of humor so we poke fun at my AVM, seizures, general forgetfulness and other odd side effects in order to stay sane.  Wednesday I had a reality check.

Without my driver’s license I lose my freedom, independence and normalcy.  I can no longer work because my chosen career requires me to drive. Changing jobs is not an option because I simply can't focus long enough to learn a new position.  I can no longer pick my kids up from school if there is an emergency, let alone take them to extracurricular activities.  I can’t go to the grocery store, doctor’s office or visit a friend without asking others for help.  I know that this set back is temporary but I feel like it was the final straw.

I am tired of explaining what an AVM is repeatedly, especially to the same people.  I want people to understand that my recent surgery is not a quick fix but the beginning of a very long and dangerous journey.  I hate that the radiation I received is compared to those of a cancer survivor.  It is very, very different, as is my disorder.  I want my friends to listen and support me but know that I can still listen and support them.  I want people to know that I have skill deficits, memory loss and get tired easily but my AVM doesn’t define who I am.