That episode of The Simpsons where Homer was interviewed on “Rock Bottom”? (S06E09)

Did you watch it? If not, please take a moment of your time and watch.

http://bit.ly/ljuz66 <– advance to time index 11:05, and enjoy.

What did you take from those 2:30? That it’s difficult for me to make a sandwich, that I said the words “loosey-goosey-willy-nilly”, and that I am happy CCSVI Trials are coming to Canada, though I’m a little worried that I may not meet the inclusion criteria (e.g.: the trial group will be made up solely of Relapsing Remitting—RRMS– patients, and my diagnosis will have been changed to Secondary Progressive—SPMS– by that time). Where it strays off the trodden-path is that this trial doesn’t involve a drug and is not being funded by big Pharma. This is unknown territory for me, which is only now bringing me to the realization that my recorded comments vis-a-vis being the “magic level of handicapped” may have been kind of irrelevant.

The CBC contacted me via e-mail the night before they ‘filmtroviewed’ me. I had to be up early the next morning so that a jovial and friendly nurse could practice her ‘pokey-stabby’ (thanks again for that one, Cat) and fill a little cylindrical container with blood, ensuring that the right balance between immuno-surpression and overall health is being achieved; nobody’s trying to kill me – though that is sometimes how it feels as I’m retching over my toilet, doing my best to avoid splashing vomit on the toilet rim, streamlining clean-up into a flush and brushing my teeth (and palate…and cheeks… and gums…and tongue). The intention is instead to dampen my immune system in an attempt to hit the “off” switch on my disease. But flipping that switch comes at a price; and yes, I ask myself everyday whether I should keep it up, or whether I should just give my body a break. I am coming up on year 3 – it sure feels like it may be time.

On point – I didn’t take much time to prepare, but did think the breadth of knowledge that I have been amassing with varying levels of intensity for my whole life (seriously – my Dad has MS. remember?) would carry me through without problem. From the feedback I’ve received (though all from people I’m close to), I did ok. Right until I said that block of four words that have now been immortalized by the CBC, that I received a string of ball-busting text-messages regarding, and that my brother-in-law will never let me forget.

“Loosey-goosey-willy-nilly”. The way it was portrayed in the interview makes it sound like I was making disparaging remarks in regards to Costa Rica (and therefore Passport Medical, the medical tourism company that arranged my trip -and yes, it was expensive, but they provided a service: a surgery somehow paradoxically performed on a daily basis yet not available domestically to me). In the end, my family, my friends, and I decided to go for it – I said yes and everyone I know, a bunch of people I didn’t know until we shook hands at one of the fund-raising events hosted by my friends and family showed their agreement and support as well by helping me to afford the burdensome cost the trip would incur. Despite any misgivings I may have had about venoplasty as a treatment for MS, I recognized the limited options I had remaining and chose to give ‘er (as we say out West), going in with no expectations and a lot of hope. My experience was non-miraculous. Medically, you would call it “unremarkable”. But at least I tried.  Upon my return home, three months post-op, what I feared would happen happened; my general practitioner (GP), who I had ensured would agree with what I was doing before I went down so that I at least had a professional to assist with follow-up care, has done everything I’ve asked him to, but is limited as to how far he can actually take it. He’s great at writing papers for referrals to imaging labs so that I can have follow-up scans done, but the Québec College of Physicians has instructed any and all imaging labs to disregard requests for scans from MS patients pertaining to CCSVI. To this day, seven months postop, I still have yet to have follow-up Doppler ultrasound done. There could be a clot floating around in one of my jugulars, but because I traveled abroad, or maybe because there’s not enough empirical data on the procedure I had done, or perhaps just as I have really shitty luck – all four imaging labs I contacted in Québec refused to provide the scan I needed.

At first, I was a little upset with the CBC – I said many intelligent things, anyone who reads my blogs knows that I’m not lying. I said one thing that made me come off as a NASCAR fan, and what makes it into the piece? Oy…

I understand why it worked out that way. Nobody likes to feel like they’re in some sort of English class when they’re watching the news. I guess “Loosey-goosey-willy-nilly” gave it a little bit of flavour. Just to clarify though, that comment was in reference to the fact that ANYBODY could have the procedure done overseas, whereas in Canada, we are far more stringent in the selection process for procedures of this elk.

Just to contextualize for y’all… I was in no way making negative statements about my experience in Costa Rica, Passport Medical, or even the procedure itself. There is much that is yet to be discovered about virtually everything involved in the pathogenesis of MS. This is one road, one avenue, that I think needs further study, and less immediate dismissal by the medical community at large.

Keep cool, the summer heat has finally arrived!

-A.D.

welcome home?

Some welcome home…

I leave a tropical paradise, heavily populated by women so beautiful they rival les belles Montréalaises, only to arrive home to what feels like 6 feet of that wet, heavy, good old Montreal snow. I couldn’t have picked a better day to land… c’est la vie! The first snowfall of the year is hard on everyone, all the more so on the day you arrive home from Costa Rica. Just my luck!

I’m sure everyone is on the edge of their seat, waiting for an update on my experience down South. And rightfully so; it was all of you that made it possible. Never in my life did I ever hope so forcefully that they would find something wrong with me! Good news; the initial Doppler ultrasound detected and 80% blockage in my left internal jugular vein (LIJV) and a 60% blockage in my right internal jugular (RIJV). Both my iliac (pelvic) and azygous (spinal cord) veins were obstruction free. Success! I was a viable candidate for surgery. Just as quickly as I got the news, I was on the operating table having my left femoral vein sliced open, a catheter inserted, and balloon angioplasty being performed immediately following the venogram — the venogram which provided a more accurate measure of the blockages in my veins; as it would turn out,  “during the procedure stenosis of 80% of the proximal segment and 90% at the distal segment of the right internal jugular vein were seen associated to reflux and slow flow. The left internal jugular vein presented an 80% narrowing. Dilation of these lesions was induced through the placement of a 18 x 40 mm Boston XXL Balloon and a 14 x 40 mm Maxi-LD Balloon. Improved vessel caliber, flow velocity and direction were seen following the dilation.”

These were the notes that were provided to me post-op. You’ll have to forgive me for the jargon, it really just seems easiest to copy and paste what the professionals noted. And while I’m no doctor, common sense dictates that they found something, something that was not right. And so, rightfully, they did what they could do safely to effectively eliminate the blockages – at least for now. The next step is to make an appointment with my general practitioner, and see if he is willing to write up a consult for me to have my internal jugular veins scanned in three months time to ensure that the blockages are still clear. In the interim, a pretty radical lifestyle change needs to occur; no more smoking. Anything. No more drinking. Anything – while I’m sure the occasional glass of wine wouldn’t kill me, the problem is that with me, it’s all or nothing. That being the case, the logical conclusion is to go with ‘nothing’. Because in this instance, that nothing could turn into my everything.

The days and months ahead are going to be hard. They are going to be filled with 7-day weeks where I will be exercising endlessly, trying to tone my atrophied leg and core muscles, all with the eventual hope that I can form new neural pathways to get my legs working. While it would have been great to come out of surgery with miraculous improvements, it just was not in the cards for me. I instead must keep working, keep pushing, and follow the advice of the medical professionals that treated me in Costa Rica.

To my surgeon, Dr. Diaz, to the physical therapy team that treated me post-op (Andrea, Sofie, Claudio — who I have affectionately nicknamed ‘the Hulk’), to the nursing staff who played nurse and psychologist and babysitter for many of us (Beverly and Javier), and to all the fellow Canucks who were down there with me, both those being treated, and those accompanying those being treated, I will never find words to properly express my thanks.

Lastly, to my sister Rachel, and to my brother Olivier, I owe you two a debt of gratitude that I will never be able to repay. I could not have done it without both of you. And it’s not over yet – in the days ahead, I will likely be turning to you for further support.

I said at the beginning of all of this that it was going to be an effort where many small parts make up the whole. I keep adding more and more parts… now it’s time to find the whole.

-A.D.

A truer measure

I finally got a few minutes to put proper blog posts together… so indulge me if you will.

You’ve all read this point that the surgery went off problem free. While there have been no immediate improvements, I honestly do feel that it’s only a matter of time before I begin to see some amelioration in my condition. The trip is about more than just venous angioplasty — it’s about hard physio- harder physical therapy than I’ve ever undergone in Canada. It’s about creating a new support structure, one replete with people going through the same things as I am. And what came as the biggest surprise — it’s about learning when to ask for help, even though I don’t want it, and even though I don’t think I need it.

Most people reading this know how pragmatic I am; my atheistic views on life are an example of that. That’s not to say that I’m devoid of any sort of spirituality, I just have a hard time believing in a deity, at least one that controls life as we know it. And if there is one, well… I have some choice words for ‘it’. I don’t know if the surgery will have any impact on my condition. But if ever I were to try something such as this, even with minimal risk, I think best to do it for the disease takes an even stronger hold on my system. And that’s why I’m down here – to try. I tried Rebif, a first-line treatment for MS. It did nothing but leave me feeling like a bag of crap on days posts an injection, as well as leave the area around my belly button littered with bruises from the self injector. I tried Tysabri, only to have a neurologist (Dr. Mark Freedman as matter of fact) suggests that I discontinue that and instead began treatment with the chemotherapy drug used to treat leukemia. The chemo drug, as a third line treatment, was the first one that had an impact on my disease course, and though it didn’t make it any better it’s certainly stopped in its tracks for about 27 months that I was able to take (that is the maximum allowable). So drug one didn’t work. Drug two, though not given much of a chance, likely wouldn’t have had much of an impact either. Drug three hit the pause button on the progression but did nothing to make me better. But this treatment, this venous angioplasty, at least as in the protocol laid out by Dr. Zamboni, has had positive impacts on so many people. The why is still kind of up in the air; are strictures in the jugular/azygous veins really and truly the cause of this insidious, crippling, progressive disease? We don’t know… but I was desperate enough to give it a shot.

Some good will certainly come of this, even if not to my disease, its progression, or its impact on me; the blood thinners that I’m going to be taking for the next month will keep me from drinking. In the very least, there is a silver lining there. But exactly how this is all gonna go down is still one giant question mark. I beseech you all stick around and see what comes of it; at least in my case.

A big part of me being here came from a string of fundraisers. Each and every person that donated wants an answer to the same question I do. And while I was sad not to have immediate results, I believe they will come. I’m back in the hospital Wednesday for a post-op Doppler to ensure that the angioplasty was effective in clearing the blockage. Stay tuned…

-A.D.

The ‘omfg’ stage…

And wouldn’t you know it…5 days prior to my departure, CCSVI, the ‘Costa Rica option’, and Passport Medical have been mired with the saddest possible outcome to the same frantic desperation with which I am seeking endovascular therapy; Mahir Mostic, a pwMS whose case could not have been all that different from mine, has died due to complications from what is misinformatively being referred to as ‘The Liberation Treatment’. It’s sad. And while details are emerging on where the disjunct occurred, on what went wrong, at what level and why, I am sure, sure as I’ve ever been of anything, Mr. Mostic’s death was not entirely in vain.

Any that have been following my blogs may remember one titled ‘Balloon Party‘  where I expressed concerns over some of the same things that played into this tragic story; follow-up care, getting better only to get worse, and what my reaction would be. If faced with the same circumstances, would my decision be any different? Would I book the next flight I could back to Costa Rica and open discussions about stenting my blockage?

I voiced a rather aggressive stance on that question… but much like many things in life, what’s written on paper and what occurs in practice are often two very different things. While I would like to think that I will hold fastidiously to what I had previously stated, the sad truth – I have no idea. I have no idea how I would handle getting better only to get worse.

Life and death… complete opposites. But what they have in common; they can both be cruel and unusually unfair. I have done my due diligence. I have a doctor that has agreed to provide follow-up care. I know there is a imaging facility in Montreal that is capable of doing a Doppler/MRV/venogram, should I need it. I know Dr. Sandy McDonald in Barrie is trying to help as many people as he can. But if/when I experience complications/restenosis, will I have the strength to avoid making the same mistake?

I guess we’ll find out… I leave on Wednesday. Wish me luck… I will most certainly be doing my best to keep everyone up-to-date through further blog posts as time allows.

Megalomaniac

It’s more than just a song by one of my favourite bands–keeping myself grounded lately has been, shall we say, trying. It sounds a bit ridiculous, but put yourself in my shoes for just a moment. I’ve lived an unexceptional, extremely normal, and very low-key life, for the most part. I have yet to grow into a Nobel laureate, I’ve yet to make an indelible impact on society at large, and I’ve yet to be the harbinger of World-peace that I am in the ‘imaginary-world-I-live-in-on-the-odd-weekend’. None of it makes much of a difference, apparently.

$17,675. Incredibly, this number crept up on me -before we were even half-way through the fundraising events we’ve planned. It has left me perplexed, bewildered, and at a loss–a loss for the right words to appropriately express the depth of my gratitude. At a loss to find the best way to reciprocate the unbelievable, at times frightening generosity pouring in–from folks I know, folks my folks know, folks whom I’ve never even met, it’s enough to make my head grow even fatter than it was prior to the ‘Fix-Me’ run I’ve been on for the past month.

With many thanks to Steve and Rich P. for hosting a kick-ass party, and to Theratech for their generous contributions–from buying little chocolate bars at the office to the literal outpouring from every level, and to Lana Lee Fashions, who helped make the night a success. Thanks to my Aunts, my Uncles, my cousins, my in-laws, and at the ‘grassroots level’, thanks to my sisters–the whimsical trifecta they form when assembled is virtually unstoppable. Thanks to Enotech Mozza for their generously unsolicited support. Thanks to Casa Grecque and the crew there for helping turn the night into a success. thanks to ‘Mark-of-the-own-paragraph’! Thanks to my friends, from so many different parts of my life — from elementary school, high school, the troubling years post high school, etc. Thanks to my grandma, who sadly, I forgot to thank in my speech at the restaurant… I think we’re still cool, she never seems to stay mad at me! And thanks, of course, to my darling mother, without whom much of that evening would have been impossible.

So hard to remember everyone… if I forgot you, I am sorry! You’ll just have to take it up on blind faith that you are in my heart!

$5,439.00. That’s what we brought in — nay, that’s what YOU brought in. This brings my fundraising total to $17,675 thus far. I am humbled. I am overwhelmed. I can’t believe that we’re still not done… and that there may be even more in the works than I had originally anticipated! The “Durso Fundraising Campaign” is hittin’ the road! A very close friend of the family, Mark Gross, has generously volunteered to help organize a fundraising evening at Caffe Crema in Bridlecrest. My Western friends have been asking how they can help; here’s the perfect opportunity! The dates are still to be confirmed, but it’ll be an evening for good friends to get together with some good coffee, some good live music, and all for a ‘good’ cause (I guess that characterization is arguable…).

I will warn everyone once again — I was unable to incorporate a charitable foundation in my name, thus negating my ability to hand out tax receipts for any donations. On top of that, the donations must be made to me personally; either a personal cheque, if you bank online, an e-mail money transfer is always a quick, easy, and safe way to send money (and one which also doesn’t require me to go into a bank… always a plus with my mobility issues), or a direct transfer through TD Bank to me (if this is the manner in which you would like to contribute, just get in touch with me and we can set something up).

More details will follow, and a formal event will be posted soon… keep your eyes open. I’ll be in Calgary before you know it, and while I cannot whirlwind like I used to, I’m pretty sure we’re in for a rocking good time nonetheless.

Again, to everyone and anyone that had anything to do with the success of the “Lemonade Stand Gala Dinner” — thank you, thank you, thank you!

Costa HowMuch?

Some of you may have seen vague, introspective status update hinting that I have been seeking treatment à la Zamboni for CCSVI (which I am still not even sure that I have). I do apologize for the melodrama of some of more emotive one-liners, but, well, bite me–it’s pretty dramatic!. To confirm any outstanding suspicion–yes, I am in fact heading to Costa Rica to see if venous angioplasty can provide me with some measure of relief, though precisely what impact it may have remains to be seen. Some go, have the operation done, and see miraculous results. Others have noticed small changes (greater tolerance to hot and humid conditions, relief from muscle spasms, better sensation in hands/feet, etc.). You need to understand that the smallest change in the condition of pwMS is monumental, whether good or bad. When bad, it is equivalent to dying another ‘small-death’; that is essentially what MS is – a series of ‘small-deaths’ that strip you of your ability to walk/see/piss normally/type/drive/learn/speak/swallow/breathe (albeit the last is in extreme cases), and we’re barely scratching the surface here. So far, I have experienced a dozen (or so) separate deaths. In 2007, I lost my ability to ambulate normally. Also, in 2007, my eyesight dropped to the weakest it can be for me to legally operate a motor vehicle. Also in 2007, my driver’s license was revoked. In 2008, I began taking the most toxic drug I’ve yet to ingest (Mitoxantrone – a chemotherapy drug used to treat leukemia). Also in 2008, I became 24-7-365 wheelchair-bound. But when good–it’s the greatest thing that’s ever happened to you – believe me! I will spare you further details of the misery that is my life–but despite toute la misère, I am still a happy guy!

But now, in a rare occurrence, I am asking everyone I know to help me get to San José, Costa Rica, to have the “Liberation Procedure” that you may have heard of. At a cost of $12,900 USD through a Canadian Medical Tourism Company. I ask my friends once a year to donate to the Canadian Multiple Sclerosis Society with great success – our team raised upwards of $12,000 last year alone, with my own personal fund-raising contributing  $2,200 to that. This year, however, I’m shifting the focus to me, myself, and I.

I am unable to hand out tax receipts, and these donations will have to be made to me personally – but I can assure you, I’m not asking y’all to bankroll my down payment for a condo, or a new car. I am instead asking you to bankroll a shot at life. A life that I know will be used for good – how could I possibly live it any other way when, for all intents-and-purposes, it was good that created it.

The formal fund-raising has yet to begin, though some donations have already been made. We will be hosting a variety of events – a spaghetti dinner in Mont-Tremblant, a ‘mini-gala’ at Casa Grecque in Pierrefonds, a silent auction at Casey’s (also in Mont-Tremblant), as well as some “Comedy for a Cause” nights (at least 1, maybe 2) at Bourbon Street West. I still don’t have dates/ticket prices, but I am putting together a Facebook group to keep people abreast of what’s going on/where/how much.

I fully anticipate that I will be an emotional wreck through much of this. While I might talk a good game, I detest being the center of attention – the fact that my development occurred in a Matriarchal household kinda rises to the surface and my ability to keep the ‘plug’ on the ‘faucet of emotion’ that resides within (thanks, ladies – you know who you are…) comes loose and goes all ‘BP-in-the-Gulf-of-Mexico’. And once loose – euh, we all saw the quagmire of monolithic proportions that turned into,,,

I will be posting more info in the coming days – if you don’t have a Facebook/Twitter account, subscribe to my blog and I shall endeavour to keep it as up to date as possible.

Until the next post…

-A.D.