The never-ending update

Last week I had all my heart tests redone.  They are normal.   Thank goodness. 

The abnormalities picked up during the first exam have been deemed due to technical error.

My pre-Gilenya blood work and eye exam look good.... So, I get to start Gilenya.

On Tuesday!

It involves a day at a "first-dose observation centre" to monitor the expected changes to my heart. 

They told me to pack a lunch - sounds so luxurious...

The only outstanding issue is (another) form for insurance that wasn't completed months ago.  I have coverage from the province, but now we cross fingers that my private plan picks up the rest.  And it happens fast.  Cause this stuff ain't cheap.

Until  Tuesday...

A year in review

Today is my "MS-iversary," as I've come to call it.  Two years exactly.

It's amazing how fast things can change.

How your life alters and normal becomes redefined.

The day-by-day lifestyle that comes with a neurodegenerative disease is hard.  I try, so much, not to let it consume me.

It wins sometimes.

There have been relapses, new permanence to symptoms, and more appointments than I ever imagined.

But, there has also been a great outpouring of support.  Support from people I hardly know.  From people I've known forever.  Thank you.

This past week has involved a lot of waiting.  In my world - waiting equals stress.

I repeated my abnormal heart tests, had my blood work done - it's been almost a week.  I haven't heard anything.  The waiting is killing me.  And everyone is suddenly on vacation.  At this point, I don't have a clue what's going on in terms of starting Gilenya.

Adding anxious to anxious is never good.

But, all that being said, year two has been easier.

My type-A self has learned to live with the what-ifs a little better.  The appointments don't scare me (as much).  I conquered the injections.

So, today?  Do I do something special?

As life has it - it is also A&W's Cruisin' to End MS.  $1 from every Teen Burger sold goes to the MS Society of Canada. 

I can't think of a better way to mark this day.  A donation and some awareness.

Huge thanks to A&W Canada, who have raised over $5 million to help people with MS since starting this event.

Last one...

(At least for a while).

It was supposed to be such a momentous night.  Last daily injection.

But with the new medical issues that have popped up, a while could end up meaning a week, a month, or forever.  

Here's hoping it'll be the last-last.

Over 500 of these.  I can't believe it.

 

 

A (slightly) pear-shaped day

Today didn't go as planned.  At all.

I arrived at the clinic for all of my pre-Gilenya tests, nervous but eager.

First, I was told my appointment had been cancelled, and that someone had called me.  Umm, nope.  Nobody did.  Apparently, though - they had also called to reschedule.  Again - nope.  The rescheduled appointment is for next Tuesday - when I am away.

Big fail, receptionists.

(Gilenya will actually arrange for community-based appointments on your behalf, so this is what will happen for the eye exam now).

I spoke with the nurse, and we decided to go ahead with my heart tests and blood work, since I was already there.  Off to Cardiology I went, to start with an ECG. 

It was abnormal.

Great.

I did the blood work anyway, and now await a rendez-vous between my Neurologist and a Cardiologist.

Seriously - I think it's about time for some good health news. 

This is deflating.

And feels a little fortuitous.

Time to get started

Back from vacation, and back to work.

And by work, I mean - getting ready for my medication switch.  Months in the making, hours of research and appointments - it has felt consuming.

It all starts tomorrow. 

My preliminary tests on my heart and eyes, plus blood work. 

If all that is fine, I will fill my new prescription (pills!...eeeee!) and then go in for a first-dose hospital observation as soon as possible. 

Gilenya can cause heart issues in the first few months, especially with the first dose, hence the day of hospital monitoring.  It is expected that my heart rate will drop dramatically.  This visit ensures I am in a proper medical facility if it drops, well, too much.  This is a temporary change, and over the course of a month or so, should revert to normal.

This, plus liver function, and complete blood count tests will be a monthly occurrence while I am on this drug.  But that's the same as almost all MS medications, so nothing new.

My lymphocytes - a type of white blood cell in my immune system - will be mostly removed from my blood by Gilenya.  That's the mechanism of this more-powerful drug.  So if I don't go out too much at first, or am always slathered in hand sanitizer, that's why.

Gilenya also increases the chances of macular edema occurring.  I will be closely monitored by my neuro-ophthalmologist (luckily - at the same clinic) to watch for this.

I've had to stop taking my anti-depressants, as they are contraindicated with Gilenya (potential heart issues).  I have been through a few anti-depressants over the past years, and this one seemed to work well, even with a very low dose.  Whether or not it gets replaced with something else is yet to be decided.

One thing at a time, Sarah...

Despite these new anxieties, I am so excited that I only have a couple shots left to finish (I could have finished them yesterday, but why throw away very expensive meds?!).

Today, I am grateful:

I don't have a lock box in my fridge for my needles anymore!

I can throw away my sharps bins!

I have an excellent health care team making this process work so well.

We are going to the mall to buy special popcorn!

Nostalgia

One week down, one week to go.

And almost completely unplugged.  No TV, no internet - just my smart phone and a little bit of data.  And two kids for entertainment.

It feels nice. 

As does visiting all the local wineries.

And it's really taking me back about 25 years.  I feel grateful.  So very grateful. 

This little house, on Skaha Lake in Penticton, that my great-Grandfather built, has served 5 generations of summering McShanes well.

More than anything it makes me miss coming here with my Nanny.

This place became her home.  Her soul.

She renovated the 1960s (and the weird brown carpet) out of it.

I love that the "little bathroom" still has a matching pink toilet and shower set.

She loved shopping, cooking the best meal, swimming out to the raft, and always, ALWAYS welcomed us to come up all summer, every summer.

Now - this place - where all my childhood summers happened - is one where my boys can make memories.

Thank you, Nanny, for putting so much love into this house.

And thank you, Grandad, for enjoying AC enough to install 2 units.  For finding the best places to eat in town, and for putting up with our antics.

I love it here.  My family loves it here.  It'll always be our second home.