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.

Packing, With Pleasant Diversions...

A friend put it quite succinctly last night - this move is like no other I've experienced. Not only do I have no idea where I'm eventually moving to (which complicates what should be kept, sold or donated) but it's also like packing at the same time for a trip that I don't know how long will last. Do I pack for a week, a month, six months?

I've spent weeks trying to decide if each item is to go into storage (becoming somewhat inaccessible) or should be with me (is more than a couple of suitcases too much to bring?) Labelling has been a long and tedious process - what if I need something in a hurry- will I find it quickly enough? More to the point, if I'm not mobile - have I labelled everything clearly enough that someone else can find it for me amongst the many boxes?

Every turn brings a new challenge. I'm finding out that lots of government departments don't accept a PO Box as a legal address. And that you can't do a Canada Post mail redirection from a PO Box to a new address when I have one. Frustration after frustration.

With losing my email addresses, my phone number and my home address I've been feeling like I'm falling off the grid on Sunday.

And then I get the most pleasant reminders that there are lots of people who won't let me.

This week I heard from several colleagues from my pre Intrepid Lens days. News is travelling that I'm not well, and I'm touched that many haven taken time to write lovely notes of encouragement.

One in particular shared a sentiment that touched me more than he probably realizes.He thanked me for giving him his first big chance. I was in a position to hire several associates many years back for a new team and his resume had caught my attention. He, along with several others at the time, joined the team I was assembling for the telecom company I worked for. We were making it up as we went along, trying to fill a void in looking after the needs of our customers. Quite the ride!

If I can give myself credit for anything, it's for being a pretty good judge of character. I've hired many employees over the years in different companies - and never regretted one. Some working relationships may have been more challenging than others, but everyone brought something valuable to the table. And it's never been about technical skills - those can be taught - it's been about who each of them were as a person.

To hear that my decision to hire this gentleman so many years back made a difference in his life put a grin on my face yesterday. We all want to feel like we've made a difference. And I have my lovely daughter as living testament to having done at least a few things right during my time here!

Truly - this isn't a request for readers of this blog to let me know if I made a difference - I'm not fishing! I know by now that I left a footprint. Good or bad experiences, I was here.  A very dear friend pointed out to me that none of us are forgotten until the very last person that each of us knew leaves this earth.

(And thank you to those of you who've emailed me privately to let me know that you're glad to see that I'm posting on the blog again!) :-)

Today is the first anniversary of a day that I never thought possible. Not in my worst nightmare did I see it coming, and it continues to change the expectations I've had for every day since. The physical pain of my illness continues to increase, but the emotional pain far outweighed it over the last twelve months.

Through this experience I've seen the worst of the people around me, but also the best.  I live by a "there are no coincidences" philosophy, and it's been proven over and over again in spades over the last year. As recently as this week when I went to go choose my cemetary plot I got a good old slap upside the head. "Sandy - listen to what the universe is whispering to you (or shouting in some cases!)" I can't tell you how often someone has suggested over the last year that I write a book on a life that defies explanation (some of you might note the irony on that one). Faith continues to be on my side, all will be explained in due time.

For the privacy of those involved, I choose not to go into details other than to let you know that my communication on this blog may be sporadic for a time (I should say for a bit longer if I'm being honest, I sure haven't done a good job of keeping up here over the last year). In one week, my daughter and I have to leave our home without a fixed address to go to. The implications are far reaching, emotionally, medically and practically. I'll soon find myself without a home to call our own, without professional nursing care, without the personal care workers who have made certain that I can remain independent for as long as possible as this illness progresses. And progress it does - I can see it in the eyes of friends who've not seen me for a few months. They can see that the essence of the person they know is still in there, but its physical housing deteriorates as the weeks and months pass.

To my friends, I keep saying if I can just reach the finish line of the closing date for the house I'll be at peace. Trying to move mountains when you're not even strong enough anymore to cut meat on your plate requires a special kind of fortitude. I thank God everyday for the strength I still seem to be able to find, and the endless support of dear friends who lift me up. I'm blessed beyond words.

I leave you with this quote.

"The truth is the truth even if no one believes it and a lie is a lie even if everyone believes it"

This is what gets me out of bed each day. I'm deeply saddened that people in my life whom I care a great deal about are no longer around because they've either believed lies, or chosen to put the truth into a corner.

I'm beyond grateful for those who can see truth and love, and know that this past year has not tarnished my capacity to love with every ounce of my being. If anything, it's been increased exponentially. I look back on this past year and know that what I've learned is that unconditional love does indeed exist in the hearts of many. But also not in all of them. This is one of the sad realities I've come to learn, along with many other lessons I've been given an opportunity to learn in this lifetime.

Still here...

I apologize. There are so many of you who were following my journey with ECD on this blog and I let you down.

Half jokingly I said to a dear friend a few weeks ago that followers who aren't in direct contact with me might have believed that ECD had finished me off. You'll gather now of course that this isn't the case, and I'm sorry for leaving you wondering for so many months.

This will be a very short post to let you know I'm still here. For readers with whom I've been in contact with you know it's been quite a year. My illness continues to progress, I'm on another new experimental treatment (with yet another insurance battle - which ends with an amazing story that I'll share some other time). A little older, maybe a little wiser and still trying to get through this with a brave face and a sense of humour in a life that is very different from one short year ago.

To those who've been supporting me along this difficult journey, thank you. You know who are (and there are many of you), and you know how much your support has meant to me. I'm grateful beyond words.