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.

 

 

 

The Gilenya-process

The wheels have started turning already.  Thanks to a very organized and efficient nurse, all of my preliminary tests have been scheduled for right when we get back from holiday, and all on the SAME day!  That is an amazing feat in itself.

August 14th begins my new Gilenya journey.

And before the end of August I'll have my day-long hospital stay for first-dose monitoring.

Despite my anxiousness over starting a drug that has scarier potential side effects, I am listening to my Neurologist, believing the research I have done, and feel comfortable with this decision.  I need to be on this medication in order to slow down the process of permanent disability.

And I am positively giddy over losing the daily injections!

A decision

I have been hemming and hawing for a long time now.  A really long time.

I was wondering what was going to have to happen in order for me to make this drug decision.

I think it happened today.

(and it has nothing to do with MS, or health, or anything, really).

My car unexpectedly needed new tires and new brakes.  I needed to hand over a lot of money.  I was emotional and stressed.  And when it came time to pay, and the job hadn't been done to completion (or to my satisfaction), I called them out on it.  It was nice to feel in control, and to argue for something I felt wasn't done right.

And for whatever reason, this event made something click.  I could stick up for myself, and coherently explain what needed to be done.

When I got home, I emailed the MS nurse and told her I had made a decision.  I am going to go with Gilenya.

Firstly - it will be covered by Pharmacare.  Secondly - it's been almost 2 months, and I still haven't heard a peep about whether Lemtrada will be covered by my extended health plan. 

Too slow.  I need to move on. 

Deep breaths.  I made a decision!  Now I need to arrange for my preliminary tests on my heart and eyes. 

But first - almost time to head to the place I spent my summers growing up.  Some time on Skaha Lake.  My very favourite happy place.

Insurance

News - Pharmacare (and my insurance company for the rest) will cover the cost of Gilenya for me. 

It is double the cost of my current MS medication, about $40,000 a year.

(This is not to be confused with the medication Lemtrada - the super expensive treatment I mentioned in my last post - which I am still waiting to hear about).

One down - one to go. 

It's a positive step, simply by getting an answer, but now the decision I have to make looms closer.

A skill I definitely do not have - making a decision and sticking with it.

What's new?

Well, the crippling vertigo and dizziness lasted 6 days - I am so glad to see it go.

It was replaced with another round of food poisoning.  Equally unsettling; a thousand times more disgusting.

Running on about 80%, I thought it was time for some updates.

Jack is almost seven.  I cannot believe it.  He has suddenly merged into this pre-pre-teen version of his former self.  He can sing along to all the songs on the radio, shushes me when I am "too embarrassing," knows technology better than I do - and has the teenage attitude to go with it. 

He's a fun-loving little man who is hard to keep up with!



Pogo stick mania!

 

I also had a fun photo shoot with the MS Society for their Canada day campaign - ACTIONonMS.  It was so rewarding to be part of the series of photos sharing information about MS in Canada.

 

 

And finally - a letter from my extended health insurance.  I opened it with such mixed emotions.  If they will cover the cost of Lemtrada - do I go for it?  Or do I play it slightly safer, as I usually do?  A huge decision.

But one saved for another day, as it happens.  The letter seemed to be more of an insurance-stall than anything.  "They have not received all the information they require from my doctor, but cannot contact the doctor themselves.... blah, blah."

What further information do they urgently need to know?  Wait for it..."What is my diagnosis."

(They know that already).

Really?  5 weeks for that?  Pfft.

So, what's new with you?