By The Skin of My Teeth

I'm not a big Twitterer myself, but do enjoy following a number of people.

My daughter for one, who can sum up quite a lot in only 140 characters. She often posts with courage that I lack in admitting her struggles with what she/we have been going through. You're right my sweetheart, a lot of this really, really sucks. You may put it in different words, but know that I hear you. For the beautiful, honest, loving, smart, courageous (and often hilarous) person you've always been. I'm so proud to share you with others in your life who love and care for you. This post is dedicated to you.

I digress, back to Twitter. I follow Jasmine Star, a California wedding photographer (whose work is just gorgeous!) - who could have easily have gone into a career of standup comedy - her Tweets often make me laugh (I'm a fork-catching ninja too!) and are at times inspirational. They lead me to wish I knew her whole family reading the wonderful things she says about them. We used to have the same wedding anniversary. Don't worry Jasmine, I won't hold it against you that we no longer have that in common.

I recently started following a gentleman by the name of David Roads (Motivational Quotes). A few hours ago he posted the following:

'We all at certain times in our lives find ourselves broken. True strength is found in picking up the pieces".

Broken. This is a word that has come up a lot in conversations over the last year and some. Broken. What does that mean? I've said I feel broken. My physical body is surely broken, and my spirit at times has been broken. Almost as palpable had my spine been snapped in two.

By admitting that I've felt broken, others have shared that they too have felt broken at times in their life. We have words for this emotional pain; shattered, torn apart, ripped open, stabbed in the heart, crushed. All physical descriptions for that which has devastated one's very soul and not left a single mark of evidence on the outside of what has happened on the inside.

I'm not alone. Having felt broken doesn't make me less of a person. It doesn't make me irrational, unbalanced or immature (I'm using the gentler of the descriptives that have been offered up to me). It doesn't make me undeserving of respect and compassion. It makes me human. And if you've been there, welcome to the clan - you're human too.

I'm picking up the pieces. By the skin of my teeth. With the love and support of friends, family and even lots of people I hardly know (since starting this blog three years ago, I'm astounded as to how many strangers have taken the time to write to me with words of encouragement, faith and stories of their own to share).

Major obstacles keep being thrown in my way and sometimes I do feel myself nearing the lip of the Pit of Despair (Princess Bride reference - one of my alltime favourite movies. I could use a Wesley of my own right about now!)

But I pick up the pieces. And try to pick up my daughter's pieces. True strength, or is it having just enough optimism to hope that tomorrow will be better?

By Gosh, I Think I've Got it!

I often think about why some of us have to follow a more difficult path than others on this earth. Many wonder under the cloak of various faiths if there's a higher purpose to suffering, something that will be explained on the other side. I think I may have found a use for some of the trials I've experienced in this lifetime.

It would seem that I'm to experience the full range of medical tests, treatments (and indignities) that can be foisted upon the human body. I've had scopes, biopsies, toxic chemicals running through my veins, implants (not that kind! An internal loop monitor and my pacemaker), steroids, surgeries, scans, more meds than you can count, etc. etc. etc... with more on the way.


Perhaps after I leave for the hereafter my job is to get inside the heads and dreams of those who have some control over the health care system. With a gentle whisper remind them of how hard it is to manoever through the system when you're already behind the eight ball. To re-think that refusal to cover an expensive experimental treatment that might help the pain. To suggest that they offer a kind hello on the phone instead of a growl that makes the caller wonder if they're about to get a boatload of attitude for having had the nerve to call for an appointment.

Don't get me wrong. I've seen much of the good that happens in our healthcare system. Some really wonderful people who continue to provide me with excellent care on this journey - and who look at me as a person rather than as a patient file. Good people who often don't get the recognition they deserve. My family doctor right through to my specialists at several downtown hospitals, and the staff who support them. But in between, there are some mighty big gullies to fall into - especially if you're on your own without an advocate watching out for you.

My physical pain has delivered me to a point that I just don't think I can take much more without considering drastic measures. The last few days I've taken over five times the dosage of pain meds each day that the average grown adult should take and it's hardly making a dent (and yes, my doctor is aware of this). All non-narcotic, unfortunately I'm allergic to the whole family of opiates so they're out. I was kinda thinking that  at this point I wouldn't mind a few hours of a morphine high to take my mind off of all of this!


I finally gave in and placed the call to my orthopedic oncologist this morning. Tell me doctor what you've got on offer - Bone graft? Chemo? Radiation? Let's think of something quick because I've been checking out chainsaws on the Home Depot website - I swear, if something doesn't give soon I'm gonna tear that leg of mine off. Add to that, letting myself get a decent case of dehydration and I'm one miserable puppy today.

So, on a more serene note. Please God, let me get through this with grace, a smile and a kind word for all I meet on the next part of the journey (I was going to say leg, but that's just too lame a pun!), and humour. And let me feel the all the care and love that flows my way in abundance.


But...if any of you make this more difficult than it needs to be - I just may have the opportunity later on to get inside your head for a night or two after I've left my earthly body to deliver a message about compassion. And if you don't get it the first time...I'll be back!!!

The Sum of Consequence

As a child I was an avid reader. Undoubtedly the better part of my free time I'd be found with my nose in a book - lost in another world for hours at a time (my daughter comes by the same obsession honestly). My favourite Easter Hunt find ever was discovering a copy of "The Wizard of Oz" tucked on my bedroom window ledge behind the curtains. My parents understood that I'd get far more pleasure from a good read than from a basketful of chocolate (although they're very close and as an adult I'd say chocolate wins most days!)

My favourite Mother Goose nursery rhyme was "The House That Jack Built", as like most kids the repetition was comforting. This rhyme was been on my mind a lot lately (the line about the cow with the crumpled horn can still produce a vivid image to this day as to how that horn might have come to be crumpled). I don't claim to be any good at figuring out hidden meaning in literature - but this rhyme speaks to me about the layering of experiences (both in and out of one's control) to arrive at the place you may currently rest at.

Today I had a truly uplifting few hours with two people who without doubt (and we're going back thirty five years on this one!) had a hand in shaping how I think and act as an adult. And we shared this time today with two other wonderful souls who are also setting the bar for who I want to be when I grow up :-)

They say that having a serious illness can be a blessing in disguise (there's no way I'm ready to declare that as my truth!) but my diagnosis has brought me to a place where I want the people who brought something positive to my life to know that I appreciate the gifts they'd given me. I was very lucky to have been able to do that today. Thank you A and F for teaching me about family, faith, and so much more. But most of all about trust, a lesson I wouldn't fully comprehend until I had a child of my own. Thank you for entrusting me with all that was and is most precious to you.

And let's not wait another twenty eight or so years before we meet again!

 

A Change of Heart

I'm a little overwhelmed with all the encouragement to keep the blog public after announcing in my last post that I'd be taking it private. The readership numbers in the last two days have shocked me a little - who are y'all telling about this little blog of mine? :-)

Thank you, I've changed my mind on that decision. I'm grateful to hear that my writing has been of some help to others (and their caregivers) facing illness. And that you give a darn about what's happening in my corner, I'm deeply thankful for  your concern and good wishes.

Over time I've come to know some fascinating people - who've connected me to other fascinating people - who've connected....you get the idea. However fascinating they are on own, several have shared with me writings, teachings and concepts that have been meaningful (and of course fascinating!) to them.

Not a week has gone by in the last few months when I've not been given/sent/loaned/smoke-signalled books, articles, quotes by authors that I've never heard of - or in some cases had heard about but had never invested time in learning more about.

A big thank you to the kind and generous souls who've sent audiobooks. With my vision declining they've been a welcome respite from the printed word. But I do need to invest in a new CD player, my decades old one makes me start from the beginning again of each new chapter whenever I pause it - but maybe that's a blessing in disguise in listening to interesting ideas more than once :-)

Yesterday afternoon I had one of my scheduled nurse visits (which will disappear soon if I don't find a fixed address in the next weeks, but that's out of my control at the moment). At every visit the nurse takes my vitals, asks me questions about my pain, appetite etc. and evaluates my overall health. You might be familiar with (but I'd be pleased to know you don't have a reason to be) the Palliative Performance Scale. I've slid several notches in the last months, another one yesterday. It was recommended that I have the nurse and personal care workers come by more often too. That will have to wait until I find a home, hopefully that won't be too long a wait.

That spurred me to crack open a book that was loaned to me weeks ago (actually us, this kind friend thought this book might be helpful to my daughter) called "The Needs of the Dying - A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter" by David Kessler. Maybe not the sort of thing you want to get into on a sunny Thursday afternoon - but I was pleasantly surprised as to how much I looked forward to reading it to its end. My goodness, I'm human!!! All these feelings and concerns I'm experiencing are normal and pretty much par for the course it would appear.

I'm going to buy a copy for myself and will be happy to loan it out to any of my local friends who are supporting a loved one with "life-challenging" illness. Doesn't that sound a whole lot better than terminal?

"How Low Can You Go?" and Other Actemra Party Tricks

Please note that shortly I'll be changing this blog to a private one, requiring a password to view my posts. Some of you will already understand why. To be notified when it switches over, please email me at sessa1@live.ca and I'll provide you with a password.  I apologize in advance for the extra step, but I need this measure of privacy at this time.

Round three of my experimental treatment complete. And a complete failure.

As grateful as I was to have the opportunity to try this treatment (it had been financed by a very generous anonymous donor through Toronto Western Hospital after the government and private insurance refused to fund it), and had been deemed successful for a fellow ECD patient in the US) it wasn’t a lot of fun and I’m relieved that it’s over. For background on the difficulties of getting medications covered for rare disease, please take a listen to this CBC interview I did last year if you’ve not already heard it. You’ll be very grateful if nobody you care about is ever saddled with an illness that’s classified as rare. http://www.cbc.ca/thecurrent/episode/2011/03/11/rare-diseases/

One of the common side effects listed on the Actemra website/monograph is high blood pressure. Of course my body decided to do the complete opposite – the nurses who visited for the days following each treatment would get a look of shock in their eyes when taking my blood pressure. “How the heck are you still conscious Sandy?” That low.  “Let’s get you to the hospital if it drops one number lower” kind of low. Fainting and tumbling down the wood staircase kind of low.  I had started fainting again before the treatment, and this certainly wasn’t helping. I’ve scared my poor daughter out of her wits finding me at the bottom of the staircase in the middle of the night.

I almost didn’t even get the third infusion last week. The nurse took my blood pressure. And again. And a third time. It had dropped during the hour long infusion twice before and she was quite hesitant to continue. I however, wanted to at least see the three month trial continued to the end – maybe we’d be third time lucky? I asked my daughter who’d driven me for this infusion to say something that was sure to get me riled up – and she quickly piped up that there was something she’d been hiding from me. She’d gone ahead with the tattoo she’d previously promised to not get while I was still here. Sure enough, my blood pressure went up jussssst enough to proceed (and for the record - no tattoo  as yet, but her quick thinking was quite helpful!)

What other delights were in store? Third day in after each of the first two doses I clogged up the shower drain when a good handful of hair fell out. That was accompanied by a heart rate that was even more irregular than usual. Then came the 5-10 days of mouth ulcers each month – making eating and talking quite uncomfortable. Fevers, flu-like symptoms, blurred vision, fatigue – all especially not welcome as I was trying to pack our home for the move last week. And still no home to go to, I'm in temporary quarters (very welcoming quarters, but no home of our own on the radar yet). Bet you’re begging to trade places with me at this point!  

And NO pain relief – which was the objective of this experiment. I’d hazard to say it might even have worsened over the last months.

So came the expected decision Monday at the hospital.  And where do we go from here? Not far apparently. That’s a story for another day.