The End of an Era...

As a rule, I hate the thought of wishing time away, but it seems for the third consecutive NY Eve I am looking forward to the fresh start that can come with a new year.

In 2007 I was looking forward to my new life as single guy, recently separated and just finished dividing up all the assets I felt like I had a chance to start over. I used to tell my friends, “40 is the new 30 and now that I am heading into my 30’s again, I am going to do things right this time.” That attitude was short lived. I soon found out that the only way I knew how to be single was to act like a 20-year-old frat boy. There is a huge difference in being 20 and being almost 40… your bank account can support the lifestyle, however your body cannot! Only a couple of months into that year I ended up in counselling and self-imposed rehab to get my head on straight again.

Then I spent a few months renovating the house to sell, which was the only tangible object holding Melanie and me together. When that was sold I spent the next six months renovating my place downtown and living in my parent’s basement… I moved into my new haunt on December 23rd, just in time to ring in the New Year. In 2008, I figured that now I had really put everything behind and was looking forward to the fresh start that can come with a new year.

So, the year of 2009 seemed to be coming along as I had hoped. I had some concert travel planned and I was comfortable in my own skin, playing lots of hockey and lots of guitar. In February the bang that came from nowhere woke the sleeping giant in my head, who we all came to know and love as Achmed. For the first couple of months, I was going through tests for post-concussion syndrome and was figuring that I might have to buy a new helmet to protect my bucket from future bangs... so no big deal.

By the time I hit my birthday on May 23rd, I felt like I was on top of the world. I had started riding a motorcycle again, in my opinion, the concussion I got playing hockey was just a little minor bump in the road and I was onto bigger and better things in all aspect of my life. I had even started to grow a shaggy mop of hair just to feel the wind blow though it again… just because I could. On June 2nd, I go the news that would change not only the rest of my year, but the way I looked at life in general.

By the time the shock of the word “tumor” had worn off, I started to look at things as a new opportunity and a new challenge. Apparently the greater powers in the universe had decided that I needed a wake-up call… that is how I ended up telling the world that life with a brain tumor is not that bad. It’s not that good, there are a lot of shitty parts, but the reality is, things could be so much worse. Over my 40 years, I have spend a lot of time whining about things that I couldn’t change and not enough time working on things that I could.

You might find this funny or probably odd, but I look at Achmed as a gift, not a curse. My eyes are so much more open that they were three years ago, or even one year ago, or six months ago, or for that matter, yesterday. I don’t take life for granted anymore, and I don’t put everything off until someday anymore. One could say that I have been living in a constant state of mental stress for over two years, and honestly, until recently I thought that myself. Now I look at it as I have been living in a constant state of learning for over two years, and my intention is to keep it that way.

So, while I am not one to make New Year’s Resolutions, this year I have decided to make one anyway… actually two. You already know about the charitable fund I am starting up in 2010, and I hope everyone here will support it, I also hope none of you ever need it. I am also going to keep making a conscious effort to pay attention and be aware of what is going on. There will be no more cruise-control for Kevin and Achmed.

Believe it or not, I think that getting a brain tumor is the best thing that has ever happened to me… but I am also glad and grateful to be putting it behind me, and again I am looking forward to the fresh start that can come with a new year.

Happy New Year!

From Achmed and Me… Live Life!

Merry Christmas

It has been a while since I was here so just so you know, I haven't been ignoring everyone, I have just been sleeping… kind of.

In the past three weeks I have had a successful check-up with General Batten and a lengthy conference call with Janis in Winnipeg, and by all accounts from the professionals, I am solidly on the road to recovery. By now, with the exception of the ringing in my ear and the fatigue (though nowhere near what it was a couple of months ago) I am pretty much symptom free… well, except for the hearing loss which has slightly rebounded from the October test but is still worse than it was in April.

The dizziness, loss of balance, numbness, jaw pain and headaches have all basically been irradiated! For me this is good… for Achmed, not so much:) I had every confidence that things would go this way, but I will admit that there were days when I was not so sure, and as positive as I have always stayed, there were certainly dark moments.

Health wise I am hoping that there won’t be too much new news over the next while. My next MRI is on April Fool’s Day… you can infer whatever you like from that. Maybe God has a sense of humour and thought that day would be fitting for me, someone who makes a joke out of pretty much everything.

I will finish the 4 Guys story and the Day of Infamy story, and let you know how my travel reimbursement from the province is going, and keep posting updates related to my progress, but they will be fewer than in the past. I have a new goal for the New Year and I will keep you all posted on the progress of that as well.

As I stated very early in my diagnosis, I am going to win and I am going to have a victory party when I do. Technically speaking, I have not been declared a survivor yet, and won’t be for another year, but as far as I am concerned, I am one now and I am putting my party plans in place. My victory party with also be the inaugural event for my new charitable fund to assist people who have to travel for medical treatment unavailable in their home province… So basically, you are all invited and you will all have to pay to get in. For those of you who are geographically challenged for attendance, we are hoping to have an online donation site set up so you can virtually attend… or at least give us your money:)

There are a lot of details to work out for this project, but based on the support I have been given over the past eight months, I have no doubt that this will be successful and be helping people in tough financial and medical positions in no time.

For now, I hope that you all have a wonderful Christmas and enjoy your family and friend time over the holiday season.

2010 is going to be the best year yet!

From Achmed and Me… Merry Christmas and Live Life!

The Slow Deal to Heal...

If all of you know only one thing about me it is probably that I am a pretty active person. Between work, hockey, gym, guitar, seasonal activities and a social life, pretty much the only time I stop is to sleep.

Until a month ago, sleep was something that I did when I was either too tired to do anything else or I knew I had to squeeze in a few hours because tomorrow is going be a big day, it was my relaxation time. Over the past year or two I have learned that you need to make time for relaxing and quieting your mind and over the past month or so I have learned that you need to do the same thing for sleep.

I have been feeling pretty good over the last couple of weeks, particularly over the past few days. Everyday I feel stronger and healthier and closer to returning to myself. Everyday I am greeted with the renewed disappointment that I am only human and sleep is a requirement that is needed to live life. Everyday I feel like I discover all over again that I need 8 to 9 hours sleep just to function. Everyday I seem to find out for the first time again, just how mentally draining the simple task of reading is.

At times I feel like I could jump over the moon. I have been back to the gym for two weeks now and my routine is getting closer to where it was when I went to Winnipeg for the nuclear blast. I have played hockey for the past two Wednesdays, although not well and everyone is giving me a wide berth on the ice, but at least I am on skates again. Physically I feel like I am regaining my life to the point where it was before all this happened to me... mentally is a whole different issue.

I love to read for pleasure and I also do a lot of reading for work. Imagine how frustrating it is for me to realize that reading two pages of something that I am actually really interested in, is enough to put me to sleep. Because of the nature of my job, and the fact that I have been back in the office for a couple of weeks now, I seem to be getting more tired as time goes on instead of more energetic. People keep telling me to take my time and don’t push my recovery, and in general I agree with them, but they are thinking of the physical pressure I put on myself, not the mental. Physically I feel great and would recommend radiation surgery to everyone (ok, not really, but it is not as hard on your body as you might think), but my brain is tired. If I am not in bed asleep by 11:00, I am not able to get out of bed before 10:00 the next morning. That may not matter on a Friday or Saturday, but there are seven day in the week and for five of them I have to completely readjust my lifestyle... at least temporarily.

Some people may think, “you are getting old, time to slow down.” Well, to those of you who honestly believe that, I have one thing to say... Bite Me! If you are healthy, age is an attitude and once my head heals, I don’t plan on sleeping for ten or eleven hours every day.

Today I have to go see Dr. Batten for the first time since I got back from Winnipeg. The last time I saw him he told me I would be able to be right back to all of my usual activities a week after my surgery. I am thinking that neither he, nor any of his patients with this tumor, lives a very active lifestyle.

From Achmed and Me... Live Life!

Oct 28... A Day That Will Live in Infamy – Part Two

So, as I said, it was suddenly Halo Brace installation time. It is not as life-threatening as having your brain blasted, but it is a helluva lot more uncomfortable. I can only compare it to getting hit in the head with a sledge-hammer on four points at the same time, then after the first hit, you get hit again, and again, and again... until the pain pretty much makes you pass out because they never gave you enough anaesthetic to deaden the nerves, then they drive screws in to hold the hammers in place!

I have been in a lot of painful situations throughout my life. I have fallen off a roof, driven a chisel through my hand, dove head-first into three feet of water, had a car radiator blow-up in my face, broken more bones than I can count, ruptured my appendix, been hit in the face with a slapshot and been kicked in the crotch. I would welcome them all again to not have to get another halo brace on my head.

Dr. West and Dr. Schroder really tried their best to keep my mind off the bullets that were being attached to my skull, but apparently, as I mentioned in an earlier post, I have a resistance to anaesthetic. I remembered this as the first two “pins” were being “placed”. (Placing pins sounds so much gentler than screwing bolts, or installing beams, or drilling anchors... because these WERE NOT “pins” and WERE NOT “placed”). The doctors looked at me and said, “Are you alright?”

“Well, it hurts a bit.”

“Does it hurt or do you feel pressure?”

“Both”

“Do you feel a sharpness like a knife?”

“Oh yes, absolutely. It feels like you are hammering nails into the back of my skull.”

“OK, we are going to give you a little more anaesthetic to help deaden that for you.”

West to Schroder, “Put the whole needle in there, he is going to need a lot more.”

Me, “Damn...”, Actually, what I said was considerably more colourful that damn, it was more like that multi-purpose F-word that we all know and love!

Before this all started actually, Janis had rubbed some Botox cream on my head to help freeze it and deaden any sensation. I looked like a teenager from the bridge of my nose up... no forehead wrinkles. I asked her if I could have a couple of tubes to take with me. She laughed and said I was such a jokester... I don’t think she completely got me, I was serious.

So, anyway, after the four, 357 Magnum-sized “pins” were anchored to my skull, I was made lie down and regain my composure. Apparently I lost my entire colour, my blood pressure shot through the roof and I got dizzy before I even got to the radiation tunnel. Janis told me it happens to all guys in ‘my’ category (18 to 45 years old), we all think too much about what they are doing to us with those needles and screwdrivers. Personally, I think it is because I was so calm that she decided I did not need any drugs to help me through the day! Let this be a lesson to you... when in hospital, act worried and they will give you drugs to relax you.

This ‘lightweight’ steel frame that they use to hold you in place all day is not really very lightweight. It may only be 2 or 3 pounds, but you try to hang half a bag of sugar off 4 bolts in your head and tell me how lightweight it is! Not to mention that when you lie down, and they snap you in place so you can’t move, the two lag-bolts in the back of your head are taking all of the weight and pressure of your entire body... just try doing that for 8 hours!

After I stopped swearing at how this has to be the most ridiculous looking and most uncomfortable thing that I have ever worn, Dr. West looked at me and said, “It’s ok Kevin, the worst part of the day is over now.”

I smiled at him, “The worst part better be over, I didn’t fly across the country to be tortured, I came here to kill that little bastard in my head.”

He smiled back, “And that is exactly what we are going to do.”

“Well good then, might as well get the shitty part of the day out of the way early!”

“Yes, we might as well... that is a good way to look at it.”

You would really have to know Dr. West to really appreciate how this conversation must have seemed to him. He is quiet, gentle, friendly and probably wouldn’t say ‘shit’ if his mouth was full of it, yet he seemed to enjoy the banter with me and my attitude. I don’t think they get a lot of people in the neurosurgery unit who try to make fun out of the whole situation. It is a pretty sombre spot... I am probably not anything like their average patient.

Once my blood pressure had returned to normal, Janis came by with another needle. This was some kind of magic dye used to get a full outline of Achmed in the MRI machine. All I can say about that needle is wow... I wonder if that is the rush that you hear heroine addicts talk about? I got hot and sweaty and tingly... of course at this point, I hadn’t eaten for 12 hours either, so it is possible that hunger was starting to play a role in my behaviour.

Not even breakfast time for most people in the city and I had already gone through a days worth of crap by this time.

From Achmed and Me... Live Life!

October 28... a Day That Will Live in Infamy - Part One

By the time evening had settled on the sleepy town of Winnipeg, that cold autumn day, my head felt like the Japanese fighter pilots, in this case Dr. West and his team, had blasted the shit of the landscape know as my brain. Unlike Pearl Harbour, it won’t go down in the annals of history as the great battle that awoke a sleeping giant in the Second World War, however, it will never be forgotten in the my own personal battle with Achmed!

Oddly enough, instead of waking me (not that I am considered a giant by many people over the age of two) it pretty much put me to sleep for two weeks. Today, almost four weeks post-nuclear blast, I am finally starting to feel like I have survived the surgery and my life is starting to get back to normal. I still get tired easily, and mornings are more often harder than easier, but the dizziness is gone; the headaches are really tame for the most part; the jaw burning in not as regular as it was; my hand numbness has dwindled down to a slight tingle and the numbness in my face has lessened. I have about a 30% hearing loss in my right ear, and that is permanent, but it seems to be stable.

In the picture above, Achmed is painted red to easily pick out. The white mass he is pressing up against is my brainstem... enough said!

The events of October 28, 2009 are etched into my memory like a diamond cutting glass. Every smell, movement, conversation, needle, sound and worry are still lingering in the back of my mind. The day of my surgical blast, there were two other people on my ward getting treated as well... unfortunately for them, their prognosis was not nearly as positive as mine. If I didn’t know how lucky I am before I got out of bed that day, I certainly knew how lucky I am by the time I got back in it.

My day started with a 4:30 alarm. Even on a good day, that is not really a great way to begin... when you know that the potential, however small it may be, is that this may be the last time you ever actually get out of bed, you savour every moment of hauling your tired ass to the shower. I think I felt every drop of hot, steamy water run down my skin that morning, and I don’t believe I could name a moment in time when my senses were more in-tune with my surroundings. Only if I could have been on top of a mountain, or lying on a hot sunny beach, or at a concert... it almost seems like a waste of an experience for that sensation to be in a clean and comfortable hotel room.

The drive to the hospital was uneventful... there is not a lot of traffic on the road at 5am. By 6am I was in my hospital bed getting my vitals taken for the record. With a heart rate of 51 and an almost perfect blood pressure, Janis the nurse decided that I was calm and coherent and DID NOT need a sedative... and the valium that I was looking forward to, and possibly the only thing that I was looking forward to other than this whole mess being over, was taken from my grasp like snatching candy from a young child. I am pretty sure that the expression on my face would have been the same as that young child if I had been allowed to have a coffee and was completely awake!

Then Lynn the nurse showed up at my bed with a tray that looked similar to the torture tray that you see at the dentist office. She then took the liberty of inserting the biggest needle I had ever seen, directly into my arm, which was to stay there for the whole day so it could serve as a sort of needle port for all of my needles. This needle port was in the bend of my left elbow, and even though I was technically allowed to bend my arm, every time I did, the pain shot though me like a bolt of lightening. If I had been older and out of shape, they may have thought I was having a heart attack the first time it happened.

After all this was ready, it was time for “Meet the Surgeons” which is nothing like “Meet the Press” for any of you who watch that show. Obviously I had met Dr. West, but I still had to meet Dr. Schroder. These two guys are the nicest, most helpful people, and hopefully and by all accounts, the best at their trade. That doesn’t change the fact that I hope I never see either one of them again, especially when the literal translation to “meet the surgeons” is “go get a halo brace installed in your skull”.

I need to take a break now, lunch is over and I am starting to get queasy thinking about the next part.

From Achmed and Me... Live Life!

My Head is Back in The Game... More or Less!

So today, for the first time in about a month, I actually felt like my old self again and a series of events in the past two days have brought me out of my sluggish stupor and flying back into the face of reality.

Yesterday I got my Telecaster back from the shop with a new pickup in it; today after work I actually had a good workout at the gym, not just a ride on a stationary bike to make me feel somewhat active; then I got a $400 speeding ticket in the mail (in all the confusion and bureaucratic crap I had to deal with for the Winnipeg nuclear blast, I missed my court date a couple of days before I left… another stinging reminder of how screwed up our ‘healthcare’ system is); and finally, as I was walking into my bedroom, reading my conviction notice and thinking, “ok, no problem, no Christmas gifts for anyone this year,” I stepped right into Mikey’s breakfast… yes, my little fur-ball had puked all over my bedroom floor! A week ago Mikey could have thrown-up all over me and I probably wouldn’t have had to energy to wipe it off.

Of course, you already know that I went back to work last week, but somehow three half-days doesn’t seem like a very profound effort to re-establish myself back in the workforce. This week started off with more than half days, but not really full ones and my plan tomorrow is to actually work for the entire time that I get paid for.

I still have trouble getting going in the morning, mostly because I am not sleeping well or I have a headache. The pressure from lying on the anchor-holes in my skull, where once was attached a halo-brace, is less than comfortable after an eight hour nap. That being said, the headaches, jaw pain, balance problems and dizziness, which were all short-term effects from the radiation, seem to be disappearing at a pretty good rate. I haven’t had a burning sensation in my jaw in a couple of days and the last time I was dizzy was yesterday. The numbness in my hand is all but gone, as it is in my face. These particular effects being gone could be a side-effect of the steroids I was shot up with in Winnipeg, so it is possible that they MAY return before they hopefully go away for good.

All-in-all, I am recouping pretty well!

Today marks 3 weeks since I had 4 screws drilled into my head and got blasted with enough radiation to turn me into The Incredible Hulk, and I finally feel like I am returning to normal, or at least as normal as I probably ever will be. I have really fallen down on the job on keeping everyone informed the way I had said I would, but I will fire a few updates in here over the next week or so to fill you all in on how things really went with the surgery and how I was so incoherent after they fried my brain, that I couldn’t even order a chicken sandwich over the phone. Luckily for my tummy, the guy on the other end of the phone knew what I was trying to say and kept finishing my sentences for me… I have a few friends who might be interested in hiring him to translate for them when they go on a road trip!

From Achmed (he’s still there but hopefully actually dead now) and Me…Live Life!

Achmed's 12 Days of Sleep

Not to be confused with the 12 days of Christmas, where there is constant partying and celebration, the 12 days of sleep were just that, SLEEP.

The first day after surgery, I slept about 15 or 16 hours on and off, probably in 2 to 3 hour stints. As time went on, the sleep time became longer and the time asleep became shorter. Here I am now, realizing once again the hard way that my body is not yet ready for full-steam ahead. I still need 10 to 12 hours of sleep a day, although it seems that my afternoon naps are becoming less required if I sleep in for a bit in the morning.

This past weekend I did everything in my power to try to get myself on a ‘normal’ type of schedule. Friday night I was so bored that I went to a movie with my niece and my sister and her boyfriend… I never go to movies. In fact, the irony was not lost on me that I had spent two weeks lying on couches and beds, watching TV and movies (something that I hardly ever do anyway) and then, my first night out in civilization I went to a movie! It was good to get out of the house but I still wonder what I was thinking. I didn’t even get to see a good blood and guts movie, I saw a movie about a bunch of girls in a roller derby.

Anyway, today my intention had been to go back to work, even if it is only half days for a week or two… I am really starting to lose my mind doing nothing! It seems that between a movie on Friday night, doing odds and ends around the house on Saturday, popping into a friend’s house for a birthday party on Saturday night and going to the cabin for the day, with Mom and Dad on Sunday, I depleted my strength reserves. I went to bed at a half decent hour last night and never hauled my ass out of the rack until almost lunchtime today. And a continuing problem I still have nagging at me from the surgery is that the incisions on the back of my head are not healing as fast as the ones on the front of my head… this is leading to me waking up every morning with a driving headache from the pressure on the wounds while I sleep.

The pressure headache from the halo brace is almost gone, just some reserve tingling on the back of my head and directly on the scars on my forehead. The roaring in my ear has mellowed for the most part. It is still there, and most likely always will be, but the frequency seems to be more constant lately. The burning sensation in my jaw still comes and goes, but it also seems to be lessening and lasting for shorter periods of time when it pops up.

My finger numbness has lessoned and my facial numbness seems to be less severe than it was, although my right eye gets tired easily and looks like it is half closed when I start to fade. The headaches seem to be controlled for the most part, by advil and tylenol, although I am eating them like candy. Some of the lessening symptoms could be a side effect of the steroids, and now that they have probably cleared my system those symptoms may return again temporarily.

The two symptoms which concern me the most are the sudden dizziness I experience and what seems like chronic fatigue. The doc says that these will fade over the next few weeks; they are just residual effects from the radiation and not to worry. Well, a different doctor told me not to worry when he said I had a brain tumor, he words didn’t seem to help me much at that time either.

Between dizziness and tiredness I haven’t been able to update this venue like I had planned… although I originally told my boss I would be back in the office a few days after I got home. I am not sure if I am being overly ambitious in my return to life or just not realistic in the expectations that I have put on my recovery. I am healthy and strong, I really didn’t think I would be laid up for so long!

So, it seems that ultimately I should be able to get back to work this week… my productivity rate has still to be determined. And in case you are wondering right now, yes, I am going to take it easy for a few weeks. Afterall, I don’t want to be laid up for the Christmas party season:)

From Achmed and Me… Life Life!

Achmed Back on The Rock

So, finally I am back here for a brief update on what happened to me last week. Apparently my confidence level in my healing abilities far outweighed the reality of my situation.

I had every desire to keep the blog updates going as I recovered from the nuclear blast, it seems however that my desire to sleep coupled with the biggest headache I have ever even heard of, were at complete odds with my good intentions. Actually, that may be slightly inaccurate... it would be better put to say that my intended desires were over-ruled by my sleep desires!

To make a long, and somewhat foggy, story short, I am starting to feel better today after four days of what I can only describe as the worst possible hangover that you could all collectively imagine. I have been kicked in the crotch and doubled over in so much pain that I almost threw-up and I would choose that again over having four screws drilled into my head while I was awake!

As it turned out, and I already knew this and have NO IDEA how I could have possibly forgotten, I have a tolerance to local atheistic. I found this out the hard way when I was in my early 20s and had to get my wisdom teeth out... I suppose it is possible that the wisdom of this particular knowledge was removed along with the four perfectly healthy, and severely impacted, teeth at the back of my mouth. When the dentist started digging my teeth out, I screamed and almost hit the roof. I can only compare it to some kind of medieval mouth-torture. In the past I have occasionally wondered if the dentist was just too cheap to use enough novocaine and that was the actual problem that day in the chair. After feeling the sensation of knives digging into my skull, I am absolutely sure that I have a resistance to deadening needles and I am now absolutely positive, and in no uncertain terms will I ever forget, this fact about my own personal biology if I ever need any local atheistic again! The recovery may take a little longer, but it beats feeling sharp things dig into you.

Wednesday was painful and uncomfortable, Thursday I fell in and out of consciousness all day and Friday I flew home, in what was one of the worst cross-county travel experiences I have ever had. Saturday and Sunday I mostly slept on and of all day and today I hauled my wounded ass out of the rack at close to lunchtime.

My headaches are improving and I am sleeping for longer, less interrupted periods each day. The swelling from the four incisions is going down and today, for the first time since Wednesday, I have been able to open my eyes completely for extended periods.

Over the next few days I will get the details of the surgery and the trip home here for anyone interested. All I can say about my trip home is... I flew Air Canada! Anyone who does a bit of travel can probably guess a fair bit of my story on that subject.

I cannot express enough gratitude to the surgical team in Winnipeg and to all of you who have kept me on top of your thoughts and prayers over the last while. By all accounts from the doctors, Achmed has been completely blasted and there is no reason for me not to have a full recovery and go on to lead a normal and productive life. I won’t get confirmation of that for 12 months, but I feel positive about it and I am going to be living as if all was normal as soon as my head is no longer feeling like it is in a vice, without the aid of little orange pills.

From Achmed and Me... Live Life!

Achmed's Execution, Day Five

This will be really short!

I am out of surgery. Everything went pretty much as well as anyone could have hoped for.

I have the biggest headache that anyone could ever imagine, yet I feel great... sort of.

Details to follow whenever I can see straight, probably tomorrow.

From Achmed and Me... Live Life!

Achmed’s Last Supper, Day Four

When I woke up on Saturday morning, at 5:00am, to fly Achmed’s skinny little ass to Winnipeg, one of my favourite bands was rocking on the radio. The shrill scream of Paul Stanley’s voice said, “I really love you baby, I love what you got…” then the thundering guitar and drums, rattling like a machine gun as the melodic harmonies of the rest of KISS chimed in with, “Love Gun, Love Gun, Love Gun…”. That song has nothing to do with any of this but it has been ringing in my mind since I got out of bed to go to the airport and I kind of found myself in a guitar store today trying, somewhat unsuccessfully, to play it.

Everyone has their method of relaxation, but relaxation is not something that I have ever been very good at. My life is a constant coming and going of work and play and until a few months ago, ‘relaxing’ was something I only did when I was too tired to do something real… so, ultimately relaxing to me was going to sleep, which I always thought was a waste of time. I used to think, if you never had to sleep, imagine all of the things that you could get done!

These days when I need to quiet my mind, I usually pull out a guitar and sit in my living room playing familiar tunes that I don’t have to put much effort into. Today I am in Winnipeg, with no living room and no guitar, so I did the next best thing. I went pretend guitar ‘shopping’. Well, if you have ever been in a music store you already know, when some dude takes a $3000 guitar off the wall to play it loud, he usually hammers out a few radical riffs and tries to impress everyone in the store, then if he doesn’t suitably impress the staff, one of them inevitably takes a guitar out and embarrasses the dude. Well, my guitar chops are certainly not up to par for trying to embarrass or show off, but they are good enough for me to have fun with. Whaling out some Eagles, Blue Rodeo and Johnny Cash didn’t even hit the threat bar of being a ‘musician’ in the guitar store, so when I noticed the looks I was getting, I turned it up with some KISS. But instead of picking a KISS tune that I actually knew, I tried to play the one that has been singing in my head for 4 days… I soon enough went back to Blue Rodeo and turned the amp down.

I didn’t really get the relaxing tunage I was hoping for, particularly now that I had drawn attention to myself, so I never did get to relax with my guitar. I did, however, stumble across a great deal on an Epiphone Dot Studio. It was glossy black instead of the worn cherry that I have been craving for a few years… but you know, it’s on sale, leftover from last year’s stock. If I am not passed out or heaving my guts up on Thursday, I may have to go back there and make an unexpected purchase. Life is way too short to wonder if you should do something, and if this week has not proven it to me, nothing ever will!

So, other than my playing expensive guitars to try to relax today, I also went fabric shopping with Mom. There is very little that I dislike more than shopping, but the truth is that Mom and me had a fun afternoon. We went to the Pancake house and I loaded up on carbs so I could store some energy for tomorrow, and eventually we ended up strolling though the homeless district of Winnipeg at about the same time that all of the vagrants were heading to the shelter. Mom looked at me and said, “I feel like I am at work.” For those of you who don’t know, Mom works at the mental hospital back home! I have been in worse places than that area, however, Mom has not and I found her nervousness a little bit amusing… I really hope that that doesn’t come back to bite me in the ass tomorrow while she is hanging out in a hospital (her second home) and I am literally pinned to a table and a complete bag of nerves. I am just guessing, but I don’t think she will find it any more amusing than I do.

Tomorrow my day will start at 4:30am, with a shower and a sip of water. At 5:15 I will get in the van to go to the hospital and at 6:00 they will stab me with an IV to keep me hydrated and drugged I guess. (If you are in Newfoundland, you can add 2-and-a-half hours to my times). From there on I have no idea how long things will take or what time any of it will actually start, but in order I will get:

1) four needles injected to my head to deaden the skin and nerves;
2) a halo-brace slide down over me;
3) four screws drilled into my skull to hold everything in place;
4) another MRI
5) then I lie down or sit for up to four hours waiting for the attack plan to be put together;
6) then I am laid out on a table and screwed in place so I can’t move;
7) then the surgical team gets the hell out of the room so they do not get hit with nuclear fallout;
8) then they blast me with a reactor, known affectionately as the Gamma Knife!

There is supposed to be valium or addivan in there somewhere… I hope it is before the needles… I hate needles!

Up until a few days ago I was looking at this trip as the end of my journey and I would be on to a new journey. I was wrong. It will be six months before they even know if this blast has worked or not, and a year before it is actually confirmed. In that amount of time things could get worse, or stay the same, or possibly get better. Because of the size and placement of Achmed, traditional surgery is not only going to cause severe side effects (of which I want no part of), but it is also dangerous. If the Gamma Knife fails (Dr. West has a 97% success rate), they will try to blast me again in a few years. We didn’t talk about anything past that.

I can’t even begin to tell you all how grateful I am for the positive energy, text messages, phone calls, e-mails, facebook posts and messages, my very own facebook group that Tina and Lisa set up for me and just general good wishes and concern I have received. I am very lucky for such a large circle of family and friends and I will eventually get back in touch with every one of you!

Tonight I am really hoping to get a good sleep and tomorrow, I really want everyone reading this to send good vibrations my way, I could use every one of them right now.

Thank-you!

From Achmed and Me… Live Life!

Achmed’s Meeting With The Surgeon, Day Three

Today started out like so many other days in my life, at 7:30 my phone alarm went off for my weekday ‘get your ass outta bed’ call… apparently I had forgotten to turn it off when I got here.

I spent the first part of the morning moping around the hotel room, kind of nervous, not really able to eat, or think, or really do much of anything, eventually, around 11:00, Mom and I headed over to the hospital to get me checked in with the Neurology Department. A little know fact about my past is that I was once in the army… and I hated every minute of it (that part probably doesn’t surprise very many people). I left the army for two reasons: first, my eyesight was not good enough to get into flight-school, even though I graduated from basic training at almost the top of my class and was accepted to the Officer Training Program. Since I couldn’t fly and wanted to, they decided to train me to be a sniper and put me in the Parrot Troopers… The Airborne Regiment, the same one that was eventually disbanded because of a couple of yahoos in Somalia in the early 90’s. I figured that since there was no sensible or earthly reason to jump out of a perfectly good, mechanically working airplane, this particular career path was probably not the one I wanted to take. The second reason for bailing on a military career was… apparently I ask too many questions. My ability to find a question in pretty much every statement is probably one of the things that makes me good at what I do now, it does, however, makes one a terrible solider!

Anyway, my point was supposed to be that the dude who drove me to the hospital was a retired airborne guy. We spent my whole drive talking about jumps and comparing close calls to tragedy. He found it a little amusing that a guy who turned down a career in parachuting eventually became a recreational jumper who had to pay to jump out of planes. Well, I have always been one to take the long way around to things.

Eventually I got checked in at the Winnipeg Health Science Centre. I have only one thing to say to any Newfoundland Healthcare professionals who may be reading this… customer service, if you can’t figure out what it is, come to Manitoba and go to a hospital! People here are really friendly and people in the healthcare system are not only friendly, they are also HELPFUL! Enough of my ranting, although I am going to recommend to the Health Minister at home that he take a trip out here to see how things could be on the Rock.

So, once I was all squared away, I met with my surgical Team, lead by Dr. Michael West, a tall, relaxed and knowledgeable individual. (I don’t know why, but I am always surprised at how laid back people are who are involved in brain surgery, I know that is probably a good thing, but really, these guys seriously piss icecubes.) After a bunch of introductions and questions and preliminary testes, I saw a picture of Achmed. I now know why my headaches have gotten so bad and have been going on for years and I didn’t really pay attention to them. To put it in Dr. West’s words, “Your tumor is quite large for someone so young.”

Achmed is pushing against my facial nerve, which is causing the numbness; he is growing on my auditory and balance nerve, which are irreparably damaged; and is pushing on my brainstem and reducing the flow of spinal fluid, which is causing numbness in my hand that I always thought was related to a herniated disc I had a few years ago.

Not that I was ever considering any of the alternatives of treatment, other than the Gamma Knife, but after today I have realized that it is the only real treatment that will work, and in another year or two, I may not have even been eligible for it.

Simply, if left alone Achmed “will paralyse me and eventually take my life”, (although Dr. West did say they would intervene before I actually died), because of the location to the nervous system, the relevant nerves and the infiltration in the brain and pressure on the spinal column, tradition surgery is not only an option that will give me a crappy quality of life, but it “would present several unwanted complications, such as: severe nerve damage to your face and balance, complete deafness, potential spinal fluid leakage and paralysis.” Everyone who even knows me a little bit knows that I am not having any of that!

Interestingly enough, I have been telling everyone all along that my balance has not been affected at all by Achmed. Apparently I have been wrong. My body has adapted over the past 10 to 15 years that Achmed has been along for the ride. Oddly enough, if I get some shrinkage of Achmed, and because of his large volume it is quite possible that he may get up to 30% smaller, two side effects are going to happen: the pressure on my facial nerve may be eased and my balance may be partially restored.

In a twisted set of circumstances, if my balance gets partially restored, it is going to screw up my balance until my body readjusts… how’s that for irony?

On the hearing front… my hearing is permanently damaged it is likely to get worse over time, even with a successful Gamma Knife treatment. The roaring in my head is just something that I am going to have to get used to, although it is possible that the fluctuations in my hearing and roaring may stabilize, which would at least give me the opportunity to adapt to whatever level it settles on.

I am not going to be a candidate for any kind of traditional hearing aid, although there is a type of surgically implanted speaker system that I can look into. Simply, they put a microphone in your bad ear and a speaker in your good one, and your good ear picks up the sound on your bad side. Unless I go completely deaf, it is not likely an option I am going to seriously look at.

As I said to Dr. West, “This suck man.”

He nodded and said, “It does suck Kevin, but this treatment is your best option to preserve your quality of life, and that is what is important to you.”

I couldn’t have said that better myself.

Tonight I am taking Mom out to dinner. Tomorrow I am supposed to ‘relax’.

From Achmed and Me… Live Life!

Achmed’s Winnipeg Trip, Day Two

Yesterday was pretty low-key. Slept in until 9:00 and then went to Mass with Mom. The priest there was this charismatic Italian guy from New York who spoke like an enforcer in a mafia street gang. One of my lifelong interests has always been the history of the Mafia, so this accent always makes me pay attention to whatever is being said, no matter what the topic. I gotta say, it sounded really weird to hear a Mafia voice talking about the Church and Christianity instead of prostitution and whacking some rat.

From there Mom and I hit Earl’s, a Western eatery, where I ate many meals as a student in Calgary. Standing on the bar, directly across from my seat was a Kokanee draft tap. Kokanee is a beer made from glacier water and is smooth as silk when you drink it. I haven’t had any since my last trip out west, which was a few years ago. So while I drank my club soda, I stared at a draft tap of one of my favourite beers in the country, unable to have any of it. I think that feeling is what alcoholics must go through when they are jonesing for a drink. I am pretty sure I am not an alcoholic, but I do hate being dictated to on what I can and cannot have in my life.

If you have ever been to Winnipeg, you have probably been to The Forks. It is nothing fancy, just a market in what I think is an old railway station, but everyone here thinks it is the cat’s ass of tourist attractions so we had to go take it in. What can I say about it… they had good coffee and the buskers knew all the words to the songs that they were singing. Then back to the hotel where we watched about a dozen CSI episodes and tried to keep my mind off my hospital trip for today.

I slept pretty well last night, mostly because of the lingering jetlag I think, certainly not because my mind is at ease. Today I go to meet the surgical team and, of course, Tammy… the voice I relate to both terror and hope. Today is also my last chance to back out of this whole thing and go back to NL with Achmed still intact. This doesn’t really seem like an option to me seeing how the nerve damage from real surgery seriously threatens my quality of life.

My cold seems to be getting better as well. This is great news, as sneezing in the tunnel of radiation would mess me up pretty bad… when a gamma ray hits your brain, I think you are pretty much done as far as cognitive abilities go, hopefully I will be able to remain still. Between the halo brace being screwed to my head, and the bed being screwed to the halo brace, and the valium being somehow in my system to make me believe that I am in a big open space instead of a little tiny tunnel, I am hoping that staying still is no problem. I am a little worried about my small bladder though.

So, if you have any free time on Wednesday, I would appreciate some positive vibes being sent to Winnipeg while I am screwed to the table, under the knife. I don’t think that is too much to ask for.

From Achmed and Me… Live Life!

Achmed’s Last Flight, Day One

As a rule, I love to travel, but after only one night in Winnipeg I now realize why I have never spent any significant amount of time here. I have nothing against the place, the people are very friendly and the weather is better then we are getting back home on the island right now, but I spent a Saturday night lying around a hotel room watching the tube, which has to be an absolute first for me.

The trip here was pretty uneventful, except for the fact that by the time I got off the plane I was pretty much a walking zombie. I don’t sleep well the night before I fly on an early flight and I don’t sleep on planes. So by the time I checked into the hotel I was exhausted, managing on three hours of sleep in two days and it was only lunchtime when you factored in thethree-and-a-half hours time difference to the mountain zone. When I sat on the bed, I passed out while Mom was in mid-sentence to me talking about something… of which I have no idea what it was… sorry Mudder.

Another absolute first for me on this trip yesterday was going shopping with Mom. Not just any kind of shopping… BRA shopping! When I woke up from my two-hour nap, I was starving so we headed to the mall across the street to look around, and I figured I would grab a slice of pizza to hold me over until the big dinner that I was looking forward to… I love to eat! Mom says, “let’s go over to the mall across the street, I need to pick up a few things.”

Finding a slice of pizza proved to be a much bigger job than I had anticipated and we ended up settling for chicken salad at Wendy’s instead. Finding the bra section at Sears worked out to be a much easier task than I had hoped. I was getting some pretty strange looks as I leaned on a rack of lingerie, drinking my coffee and smiling at women picking out something nice to wear on their next big date. I believe security would have been by to escort me out if I hadn’t gone up to the cash-counter when Mom went to pay for her things and everyone realized that I was a ‘Momma’s boy’ spending the day shopping with her. No offence Mom, but the next time you need underwear, I am just going to wait in the car.

Another thing that has made this trip a little uncomfortable is that I was fighting a cold all week before I took off to come here and it seems that the lack of sleep for two days has let my resistance down enough for it to take hold. I am stuffed up and sneezing and that just doesn’t sound like a good combination for a tunnel of radiation. If I sneeze during the surgery, I have a feeling that could be a bad thing… maybe I will come back home with new spider senses!

And the ‘big dinner’ I was looking forward to last night turned into a club sandwich in the hotel restaurant, while my eyes were practically bleeding from lack of sleep and I was texting Matt (from 4-guy fame) back and forth on the updates from the Flames / Oilers game, which no doubt I would have been eating a steak in his kitchen if I was home for game night.

Anyway, today Mom and me are going to be tourists in Winnipeg, seeing how it is unlikely that either one of us will ever be back here, and the forced staying up and sleeping in today took care of the jetlag. Being full of piss and vinegar and I have no where to be until tomorrow when I meet the surgical team, we might as well go out and see what this city has to offer.

I see brunch in my very immediate future!

From Achmed and Me… Live Live!

The Countdown Is On...

One week from today I will either be on my way to recovery or on my way to becoming some kind of Super Hero. There is always the chance that I could sneeze in the radiation tunnel and become blind, or comatose, or dead I suppose... but I choose not to think of those options as very likely.

I have kept myself pretty busy for the past week-and-a-half; taking in social engagements, busy with work, attending a couple of fundraising events and a Rick Springfield concert and it has all kept my mind pretty occupied and not thinking about what is waiting for me in Winnipeg. I feel a bit like the kid who has really screwed up and is just waiting for Dad to get home from work to see what kind of punishment I am in for... the waiting was always worse than the actual sentencing.

I remember the time I stole Mom’s car and me and my buddy Nick took it joyriding around town for the day. Mom had left the car home that day for me to wash; I was too young to drive at the time. Honestly, I don’t even remember if I actually washed the car, but I damn well remember the feeling in my stomach when I pulled up around the corner that day to see Dad’s car in the driveway. It is pretty much the same feeling I have in my stomach right now.

Through all of the events that I have used to keep my mind active the past two weeks, none stands out more than the Healthcare Foundation Fundraising dinner that I attended Saturday night. By my estimates, adding up tickets, auction item sales and publically accounted for donations, the healthcare system here raised about $250,000.00 in one night. Pretty good dinner and I am glad that this town has a social scene that will support such a cause.

I boycotted buying any tickets when the girl selling them could not tell me where the money was going. When I asked, she simply replied, “To healthcare.” I looked at her and said, “I have a brain tumor and I have to buy my own plane ticket to get treatment, so obviously it isn’t going into the transportation budget... I’ll pass on any tickets, thanks.”

I was probably a bit hard on her, I think she was just a student volunteer... but she still should have known where the money was going.

This interaction made me realize how little attention we sometimes pay to where our money does go. We pay outrageous taxes so that we can have universal healthcare in this country, yet we don’t have it. I have to go to Winnipeg on about 60% of my own budget. I wonder if all the people who donated thousands of dollars to “healthcare” have any idea that travel to actually get “healthcare” is not really paid for, and what is covered is reimbursed in a ‘speed-of-government’ type of fashion.

For a while I was really pre-occupied with the fact that getting to this blast was going to be something I had to pay for, yet I am grateful that I am able to get the Gamma Knife, so I probably should not complain. And because so many people who do have to come up with money to travel for treatment are so grateful that they are able to be treated, we rarely hear about the financial frustration of those who go thorough the medical system.

I am too busy now trying to get the health part of my life back in order, but I can assure you that when I am back to my old self, the Provincial Department of Health here is going to be getting pretty sick of me. Between terrible customer service and repulsive financial service, not to mention that fact that I had to do all of my own research just to find out what my options were, I think I have a lot to bring attention to. I hope that everyone reading this shows up at the fundraiser I am putting together for travel assistance for people like me... it will be my victory party. If the Healthcare Foundation can raise over $200,000 in one night to buy some computer equipment, I should be able to raise at least 10% of that amount to get my fund started and help people in my position.

Meanwhile, mentally preparing for Winnipeg and physically recovering from it are on the top of my agenda for the next several weeks.

From Achmed and Me... Life Life!

Achmed's Blind Date, October 28

So finally the waiting for news is over and the waiting for an actual blast has begun. On Wednesday October 28, Achmed and I will be having an intimate meeting with a 40,000 pound nuclear reactor.

On Friday evening, just after I got back in town from Uncle Pat’s funeral, Tammy called me from Winnipeg to let me know that my case has been accepted by the Gamma Knife team and they wanted me up there as soon as I could make arrangements. I will be flying out of here on Saturday, Oct 24 to make sure that some kind of weather delay doesn’t make me miss my long awaited date. Living in Newfoundland this time of year that has to be a consideration, it is not like I am only going to miss a day of vacation by showing up late.

At the funeral I was getting bombarded with questions on when I was going to Winnipeg. I know that people were only asking out of concern, but by the end of the two days I was getting tired of saying that I didn’t know and hopefully I would find out in a few days. In the back of my mind, every time I answered that question I worried a little tiny bit more that my case was going to be rejected and I was not going to be a candidate for the Radio-surgery, forcing me to go the ‘real surgery’ route. I can’t even explain the weight that was lifted off my shoulders when Tammy told me I was accepted by the doctors in Winnipeg.

Friday night I had to go to a fundraiser for the CNIB, where I was also bombarded by questions of when I was heading to Winnipeg. It is amazing how much things can change in a few hours. I went from being more frustrated with each question, to being happier each time I was asked the exact same question.

To say I am looking forward to getting zapped is not really an accurate statement. The fact is I am not looking forward to it at all. I am, however, looking forward to it being over and getting on with the recovery stage of it all. One of the great things about the Gamma Knife is that the recovery is a lot faster that ‘real surgery’, in fact I should be back to work within days instead of months. The headaches and the roaring and the dizziness will be worse for a while, but when the aggravation of Achmed is over, things will start to get better. I am planning to be on skates again before Christmas.

This is Thanksgiving weekend and I know that I have a lot to be thankful for, if you are able to read this, so do you, and hopefully you realize it as well.

From Achmed and Me… Live Life!

Cheers Uncle Pat:)

Today I woke up with a screaming pain in my ear that kept me almost crying in my pillow until 9:00… yes, I was once again late for work. This afternoon I got a call from my mother that my oldest uncle had passed away. That news made my pain seem pretty trivial. Uncle Pat was almost 90. He had good times and bad; hard times and easy; and lived primarily what most people would consider a rewarding life doing things on his terms… he lived the way he wanted to, period. When time came for him to check-out, he sat back in his chair, closed his eyes and went to sleep.

Getting the news at first shocked me, he wasn’t sick; then it made me sad, I hadn’t seen him in quite awhile; then a smile came to my face when Mom told me how he died. He lived the way he wanted and he died the way he wanted, most of us can only hope for that.

When I was six years old, my Grandfather (Uncle Pat’s father) passed away exactly the same way. As a young boy I often heard my father and my uncle’s say that was the way they all wanted to go… no suffering, just close your eyes and go to sleep. I am not sure what way I want to check-out, there is something to be said about having an approximate date, it gives you time to do the things that you want to clue up. I guess if you spend your life taking care of that stuff as you go, just going to sleep is a pretty attractive deal.

Even at 90, sudden death is hard on the remaining family, and in a long line of pre-mature funerals, in a huge family, Uncle Pat’s will be no exception in that regard. The difference is that once the shock has worn off, people will smile when they think of the twinkle in his eye. The sadness will heal a lot faster when you know someone did things on their own terms.

As you can imagine, in the past several months, death has been one of the things that has occupied some of my grey matter. As far as I know, I am only half way there… but ultimately, one never knows what is on the end of your next nap, or walk, or car ride, or trip to the doctor. Living and appreciating life is the way I roll now, I take nothing for granted and I try to treat every day like it might be my last.

One time when I was 11 or 12, there was an incident in Merasheen that probably would have been my last if Uncle Pat hadn’t been as strong and fast as he was. I was dumping garbage over the cliff with my cousin Gary. (Yes, this was before we all realized how bad it was to dump garbage in the ocean.) Anyway, all the stuff was in this huge iron wheelbarrow, at least huge for me at the time. When we tipped it over to get everything out, it all didn’t go down the 30 foot drop to the icy cold water below, so Gary let go of his side of the handle and got on his hands and knees in front of it to brush it all off the edge of the cliff. I was a kid, and the two of us together could barely handle this rig, much less me alone. Fortunately for Gary, and probably for me, this all happened in front of Uncle Pat’s cabin and when he saw what was happening, he came bolting down the hill to grab the wheelbarrow and more than likely saved the two of us from a drop to the beach. We got told off pretty good that day. I haven’t thought about that day in years… it’s funny how sudden news about a person can jolt memories from your subconscious.

Now my waiting to hear when I go to Winnipeg has taken a backseat to more important matters. When I was first looking at being shipped up to the mainland for my blast, it would have been around now if all had gone according to plan. People say that everything happens for a reason and if I didn’t believe it before today, I certainly believe it now. Now I will be here instead of Winnipeg this week. Now I will be there to be supportive to my family who have all been so supportive to me. Now I will be able to say good-bye to my uncle, my friend, my one time guardian… and now I will have one more angel watching over me when I get shot up with radiation.

Cheers Uncle Pat.

From Achmed and Me… Live Life!

Freedom is just another word...

I don’t make very good company these days; my mind wanders and loud crowds frustrate me because I can’t understand what anyone is saying.

I have come to accept the fact that Achmed is with me for life and I have come to accept that radio-surgery is the way to get him under control so that I can start leading a normal life again. That being said, I have a lot of trouble accepting the fact that the Canadian Sick-care Program hauls its sorry ass into gear slower than a delinquent teenager suffering from their first hangover!

This is October 5th. My first medical appointment relating to all of this was in March. So far, it has taken the bureaucratic scientific community in this country seven months just to diagnose me and decide on a course of treatment. It’s a damn good thing that Achmed is not Cancer, because if he was you would probably all be reading my obituary right now, instead of my rant of frustration!

There is a good side effect that has come out of this situation. I have proof that this spiritual journey that I have been on for the past couple of years is actually working on me. The old Kevin would have been arrested by now on assault charges, because he would have been sick of waiting around to hear something and would have completely snapped.

The thing that bothers me above all else right now is that no one in the “healthcare” system seems to give a flying F*@% that I want an answer to what is going on with my head. The fact that Achmed is not classified as a terminal tumor seems to make everyone in the healthcare system think I am being hard to get along with because I want something done.

People seem to think, just because they will get to me before this thing could ever kill me that I should just shut-up and wait until they are good and ready to give me a nuclear blast. Well, I have news for them...dying has never scared me. Don’t get me wrong I don’t want to die, and I don’t generally do things, anymore, that could speed up the process, but as a rule I am not afraid of death and seeing how it is the one thing that no one can change about their lives, we might as well all come to terms with the fact that at some point in time we are all going to become acquainted with it. I gave up losing sleep about things that I can’t change years ago.

But, there is one thing that I am afraid of: being paralysed or incapacitated. I don’t ever want to have to rely on someone else to look after me, or feed me, or change me. The little buddy in my head, if he is left alone, has the potential to mess up my quality of life pretty good. That is why I am getting fed up with waiting. Every day that passes without me getting zapped, makes it a little bit more likely that the Gamma-Knife won’t work. If you have been following along at all, you have a pretty good idea already of what that means.

Freedom is the thing that I value above all else and this waiting around has me feeling jailed and on someone else’s schedule, and there is nothing I can do about it. My tolerance for waiting and my patience for the right outcome is actually quite high, but I am pretty sure that lately I am down to the last strand of a pretty frayed rope.

Don’t even get me started on how much two plane tickets to Winnipeg are going to cost me at the last minute! There really has to be a better way to deal with all of this... I should go on a speaking tour when this is over because I am sure I could shed some light on simple ways to improve the medical system... being friendly is one that could help.

From Achmed and Me... Live Life!

U2 and a Brain Tumor – Part 2

It was 7:10am when the three of us heard the synthesized blues riff that emits from my phone every morning, just after my alarm clock, to wake me up for work. It seems that I had forgotten to turn it off when I went to Toronto for a few days. My eyes popped open instantly at the familiar sound and the first thing I could think of was, “Oh shit, the boys are gonna kill me for that!”

I was face first into a pillow in bed, or more accurately on bed, next to Other Kevin when I jumped up to run over and turn off the alarm when my pants fell down around my knees and I almost went flying into the wall. It seems that a few beers on an empty stomach, the time difference and the fact that I had been up for almost 24 hours by the time I hit the rack in the first place, all combined to make me pass out while I was in the process of going to bed. My shoes were on the floor, my belt and jeans were unbuttoned and the rest of my clothes were exactly as they were before I went out the night before. It struck me that this was starting to turn into a 4-guys kind of trip... and this time I didn’t even have a place to stay.

The day was Thursday... concert day... the reason we were all here in the first place. Everyone had things to do that morning, Bruce had to work, Other Kevin had to visit his sister and we weren’t expecting to hear from the guys in Scarborough until at least lunchtime, so the three of us went for coffee and then went our separate ways for a few hours.

This was kind of like my alone time in downtown TO. I went for more coffee, had lunch at Dundas Square watching a U2 concert outdoors on a huge screen, finally got keys, met the Scarbarians for another lunch at a Subway (the sandwich shop, not the ride) and eventually got my luggage from Other Kevin and Bruce’s hotel and hit the condo for a shower. Usually when I travel, a shower at the hotel is one of the first things I do once I check-in... I am pretty sure I saw travel and hangover grime slide off of me under the pressure of the water.

Eventually, we all met at O’Malley’s... which incidentally was the scene of the U2 cover band from the night before... for dinner and pre-show pints. It seems that Other Kevin, Bruce and I left an impression everywhere we went those few days, the entire staff remembered us from the night before and the manager gave us his card to skip the line when we came back after the concert. (To all of you reading this, who work in the healthcare system, this shows how it pays to be polite and smile!)

The concert itself was indescribable. The roar of the crowd drowned out the roar of Achmed. The energy of being down on the field in the middle of all the action was like something everyone needs to experience for themselves. The feeling of having 60,000 people looking down on you as you stand near the pitching mound was nothing compared to when everyone there started to sing “Where the Streets Have No Name” all in unison and to the point of actually drowning out the band. That guitar intro has to be one of the most recognizable riffs in rock and roll history...thinking about it here is giving me goose bumps again. We all decided that we are going back to see them again... my choice is in Dublin!

I have never found the streets of Toronto particularly friendly, but that night, after the show, 60,000 people spilled out onto Blue Jay Way and were all in happy and jovial spirits. The beer consumed and organic aroma of the Skydome may have played a part in the odd Torontonian behaviour.

Never ones to walk away from a conversation with a group of pretty girls; Other Kevin, Bruce and I found ourselves trying to convince a group of young professionals to come along to the bar with us. Apparently they all had to go home because they had to work in the morning. At this point, frat-boy Kevin crept into the conversation, “Don’t be a bunch of whimps! So you will be regretting it tomorrow, but if you don’t come you will be regretting in a few days anyway and you will keep regretting it for weeks... next thing you know you will get diagnosed with a brain tumor and will have missed out on your last chance to party with us.”

After they finished snarling at me, I told them, “you have to live life... I have a brain tumor, his name is Achmed and I am out having fun tonight.” They didn’t believe me until the other guys started nodding that I was telling the truth. They all went home anyway... I may have scared them.

The rest of the night basically turned into a carbon copy of the night before, except I had a full stomach and did not pass out in bed with another dude.

The next morning my phone rang, it was Other Kevin looking for someone to go for lunch with. Well, I am all over eating, especially on a sunny patio full of girls that seem to have to pass a beauty test before they get hired. Other Kevin, Bruce and I met at Jack Astor’s on Dundas Square and spent our last few hours in TO chilling to great tunes, great scenery and cold beer. Outside of the concert, it was the highlight of the trip. The lads had an earlier flight than I did, so eventually they went to the airport, and I went and packed.

It was a whirlwind tour, about 50 hours between airport gates. It’s one of those moments in life that seems surreal and is both cloudy and clear at the same time. It wasn’t the trip I was expecting, but I wouldn’t trade a minute of it for something else. Sometimes you just have to roll with what is in front of you and things will work out top drawer!

As the 4-guys would say, “Let it roll!”

From Achmed and Me... Live Life!

Achmed is Still Waiting...

I have been in a lot of strange and stressful situations over the span of my life but one thing that the majority of them have had in common is that there was something I could do about it. I can’t remember a time when I have felt more helpless than I have over the past several months... I don’t think I have ever been completely at the mercy of outside influences before.

That being said, I do my best to stay positive and patient, but everyone has their limits. I try to live my life as normally as I can under the circumstances although it seems that my summer of checking off things on my bucket list has been anything but normal. If I wasn’t going to the gym all the time doing balance and core strengthening exercises, I would probably be writing a will by now instead of a blog!

The past few nights I have slept like a baby (an expression that I never really understood, as so many babies don’t sleep well or regularly). I have recently changed my bedtime reading back to the kind of books I have always loved to read... entertainment autobiographies, and I think that has something to do with getting rest again. Over the past year or so I have been into reading a lot of books about spirituality, higher self and of course, business. The problem is that the majority of my reading time comes when I am hitting the rack for the night and all of these books have been making me think. Add a racing mind to a roaring head, and you have a restless night!

Currently I am reading Slash’s book, “Excessive- just because you don’t believe it doesn’t mean it didn’t happen”. That man had a wild life before Gun ‘n’ Roses got going and once he had the money to really do what he wanted... well, you should read the book. Anyway, my point is that I know that I am never going to live a life like Slash or Johnny Cash or Ray Charles, so their books are an escape from reality for me, and I think until I get the nuclear blast over with, I am going to stick to books at night that put me to sleep rather than keep me up.

So even though I have slept well for three nights in a row (a record since I first saw the doctor in April) I am still hanging out there in limbo waiting to hear when I am leaving on a jet plane. At least I don’t feel constantly tired and the headaches have not been too bad either lately. The jaw pain comes and goes, it seems to be mostly at night when it flares up and of course my hearing still fluctuates and makes me feel like I am in a Charlie Brown cartoon half the time. I was starting to think that my facial numbness had gone away, but when I actually think about it, it seems that I am just getting used to it and it isn’t on my mind all the time anymore.

Maybe part of the whole healing process with brain tumors, or any other ailment, is just putting it out of your mind and moving on as if all is normal. I know that is not always possible, but I am getting used to it.

From Achmed and Me... Live Life!

Achmed’s Day is Drawing Near!

All these multi-part blog entries, as much fun as they are to write, and they are even more fun to live, have occasionally gotten me off track of what the whole point of this thing was in the first place. Granted, I like to let people know that I, as a person, have not really changed that much and still enjoy living life, although you probably don’t really want to hear about some of my adventures… they are not all exciting anyway.

Today there was some progress in what, in my opinion, has become a six-month battle of ‘hurry up and wait’. Finally there has been some movement on the Winnipeg front. I stress the word SOME, as I am still hanging in limbo for the most part, but at least I now finally know for sure that the wheels of Canada’s Sick-Care Program are starting to creek.

After about 2 weeks of trying to find out what the hell was going on with my travel plans, I finally actually SPOKE to Tammy in Winnipeg. Tammy is the Gamma Knife coordinator for the Winnipeg Gamma Knife Centre… who incidentally sounds kind of cute on the phone… and she is the one who I will be dealing with for the planning phase of the nuclear blast.

Apparently, Dr. West (the Gamma Knife Operator, who I figure must look like Marvin The Martian from the Bugs Bunny cartoons) is still waiting for all of my ‘images’ so he can confirm that I am indeed going to Winnipeg. I told Tammy that she had no idea what she had asked our medical system for, I have had so many broken bones that they have a special cabinet for all of my X-Rays. So I guess when the delivery truck finally arrives in Winnipeg, with all of my ‘images’, Dr. West will review them and schedule me in for a blast.

She was hoping to have an answer for me within a week and they will give me a week or two to get the travel plans in order. As I have said before, it is a good thing that I have a flexible job; this could be a real pain in the ass for a lot of people. Not that it is not a pain in the ass for me, but at least scheduling a few weeks off at the last minute is not one of the worries that I have to deal with.

So I am three-and-a-half weeks in since the General gave me my marching orders, and according to Tammy I will probably be up there in another three to four weeks, so I guess Batten’s six-week estimate was pretty much on the money… assuming that I am still going.

A small bit of movement on the financial front today as well. When I got home I had a letter in the mail from the NL Dept. of Health, approving my Gamma Knife Surgery if it goes ahead, and that billing will be directly to the Provincial Government. At least I know I don’t need to come up with that $17,000 now, although I never knew I was waiting for an approval letter. That really could have sucked if I got to Winnipeg and my Visa bounced and they just sent me home… seriously, health care professionals really need to take some customer service courses. As comforting as it is to know that they all treat this as routine because they are used to it, I am not used to it. This is, hopefully, a once in a lifetime experience for me and no one is keeping me in the loop on what is happening with MY head.

The frustration I have had trying to get information on this whole thing has been almost as stressful as my new little buddy. I know what good customer service is, perhaps I can get a nice consulting gig teaching the Health Care Department how it works.

Thanks to everyone who has sent e-mails, letters, cards and positive thoughts, it seems that just when I have had enough, someone calls, or drops me a line or does something to perk me up. Every little bit helps:)

From Achmed and Me… Live Life!

U2 and a Brain Tumor - Part 1

It’s Friday night and sitting here at the Starbuck’s, in Toronto International Airport, almost seems like the whole last 3 days have been a dream and I just woke up.

Like any good road trip with your buddies, the main reason that you go turns out to be just one, in a series of events, which makes the whole thing memorable. Granted, seeing U2 is the reason we came and the most memorable event of the trip, but really that was just 4 hours out of a 50 hours stopover… not even 10% of the time. That being said, if KISS is the “World’s Hottest Band” then U2 is definitely the World’s Coolest! There was a lot of hype around the show and there was a lot of hype around the trip, they both lived up to reach beyond what I had expected.

I have been at a lot of concerts, and I have been at a lot of big concerts. One thing I now know…if you ever have the chance to be down on a field, looking up at the stage instead of down at it, with 62,000 people looking down on you… Take It!

The days leading up to the trip were really leaving me to expect nothing more than a great concert. Most of the guys I was going with all opted to stay out in the boonies and visit a friend while we were in Toronto and it looked like I was going to be stuck downtown, in the middle of everything (and in my opinion, the only reason to ever go to Toronto in the first place) by myself. Out of the 8 ticket holders, 2 guys lived there, 3 stayed in Scarberia and 3 stayed in the entertainment district, Bruce (a guy I barely knew a few days ago), the other Kevin (who I only go out with on the odd occasion) and me… if you count Achmed, I guess there were 4. When three business-minded guys get to consuming beers on a hot, sunny patio… well you just know that eventually an opportunity is going to come across the table that makes all the light bulbs go off at the same time and a potential business partnership is born. (if anything materializes out of that, you will all hear about it here)

To be honest, if it hadn’t been for the fact that a U2 concert was on my bucket list, I might have blown off the trip. Achmed was really acting up before I blew Dodge for a few days, plus the stress of waiting to plan my blind date with a nuclear reactor had, and still has, me on the constant edge of snapping. Throw all that in with the fact that I was staying in a strange city by myself for half of the trip, and I ended up going home early.

Over the years I have been on a lot of road trips with my friends and the one thing that they have always had in common was that the group always stayed together, ate together and did things together. This one was different, as we were all spread out all over Southern Ontario, each doing different things and just meeting at the show. That is not normally how I roll, and as it turned out, this trip eventually conformed to my kind of road trip anyway.

Wednesday morning I got a call from the Other Kevin, he and Bruce were hitting the pub scene for dinner and wanted to know if I was joining them. Well, it was more of a tell me what time they are going and we will all meet, Other Kevin knows me well enough to know that the answer was going to be yes regardless. When I landed I headed straight downtown; I hardly stayed at the airport long enough to say, “see ya latter”, to the guys I was on the plane with, they were all heading to Scarborough.

This is when it all got interesting. My plan had been to stay at the condo that my uncle keeps in Toronto for when he is there. To make a long story short, the last cousin who stayed there didn’t properly dispose of the keys and when I showed up I couldn’t get in. After a few phone calls, a couple of couriers and several hours of frustration, I eventually got in at LUNCH TIME the following day!!!

There was nothing I could do, so I went to the bar to meet Other Kevin and Bruce, with my luggage in tow. Luckily for me, I travel light on road trips; all I had was a carry-on… I still, however, got some strange looks when I showed up at the restaurant and walked past the hostess with a suitcase and said, “I am meeting some friends who are already here.” That was technically not really true. I knew I was meeting Other Kevin, but until I actually got to my table, I had no idea who Other Kevin’s ‘buddy’ was. Until that night Bruce was just one of the guys I knew to say ‘hi’ to at my Starbucks, as it turned out, we had a lot in common, particularly our propensity to live life and have fun!

I wasn’t even in my seat when I ordered my first beer and as soon as it came, I ordered my second. This proved to be a mistake… when you allowed for the time difference; it had been almost 12 hours since I ate! By the time my third pint was half gone, my dinner showed up, unfortunately 2-and-a-half pints on an empty stomach was too much to start the night with. When Justine came back to order more drinks, Other Kevin switched to rum-and-coke, Bruce switched to gin-and-tonic and when she looked at me, I just said, “I think I have had enough, I am a bit bloated and I can’t drink rum or I will be hung-over tomorrow.” Bruce piped up and said, “He will have a double gin-and-tonic also.” I had only ever seen this man at Starbucks, but I am sure he must have been my wingman in a previous life.

This was the pre-cursor of what let to be a great night out in a strange city where we saw a pretty good U2 cover band; met lots of interesting people and walked for, what felt like, 2 hours looking for a hotdog. Eventually we got pizza and I ended up “sleeping” at The Royal York. I wonder how many potentially homeless people end up crashing in a 5-star hotel?

One thing I love about being really on the go these days, is that it keeps my mind off Achmed, although not having a place to comfortably sleep probably didn’t help me any.

From Achmed and Me… Live Life!

The Blessing of Achmed

I don’t know if any of you are Rod Stewart fans, but when I typed “The Blessing of Achmed” I instantly thought of “The Killing of Georgie”, which was indeed, a great song, and according to the title, somewhat appropriate for what I did last night.

I was raised as a Catholic, and although I have spent about half of my life not going to church outside of special occasions, I still kind of consider myself one. I am not a fan of overly zealous people in any type of belief, and I am pretty sure that no one can ever accuse me of being a fanatical religious type, but I do have the utmost respect for other people’s beliefs and I would never mock any of them. Be that as it may, I am a spiritual person and I believe in the principals of Christianity, giving, do unto others, a higher power, etc… and as you all know, I am a big believer in positive thinking.

Well, last night I got a big religious dose of positive thinking. Most of you have probably heard of ‘Last Rights’, it is a Catholic sacrament that is administered to someone by a priest when they are dying (when the person is dying, not when the priest is dying). I am not dying, not yet anyway, but there is also a sacrament for the sick, or healing… I called it ‘Pre-Last Rights’… Father Bill (who is also my uncle) laughed, but I am still a little unsure if he thought it was funny or I was being inconsiderate. (Hey Fr. Bill, I know that you read this, so in case you were not sure, I was just joking).

So last night I was administered the Sacrament of Healing, by about 20 people who all prayed (or knowing some of who were there, they just emitted positive energy in general) and I got doused with oil that smelled like lavender. As Fr. Bill was putting this scented, blessed, holy oil on my head and hands, I thought to myself, “Hey, this stuff smells pretty good, I should take the leftovers and use it as massage oil.” As I thought this (luckily in silence) I also thought to myself, “When I finally do die, I think I am going to hell.”

Interestingly enough, I have to comment on the oil. My mother took the leftover oil and said, “We will bring this to Winnipeg with us, just in case.” As I watched mom bottle up the oil I couldn’t help but remember my wedding day. Melanie’s (my now ex, but then actual wife) cousin had brought a box of Viagra up from the states as a wedding gift for me and presented it to me with a big long speech, and asked me to open it and show everyone what it was. I like presents, so I didn’t even think about the fact that this could be a joke. I unwrapped the box and there it was; a blue sample box of 12 Viagra pills. It was pretty new on the market at the time and not easy to get your hands on without a prescription. Of course everyone at the head table wanted to see what the package looked like, so I passed it on down the line. I never got it back, but there is a clip on my wedding video of Dad admiring the box and sticking in his inside jacket pocket. I never was able to bring myself to ask for it back. Makes me wonder if I am ever going to see that oil again.

Really, one would think after a night like last night, with all the good feelings and everything that I would have slept like a baby. That unfortunately was not the case. Yesterday was one of the days that I heard static all day, and now I have come to realize when that happens, I am not getting any sleep. It seems to be a sign of a major headache brewing. I am not exactly sure what I can do about it, maybe when this happens I just need to lie down for a while and rest instead of pushing myself all day. I am sure I will figure it out eventually.

For now I am going to pack for Achmed’s next road trip, we are off to Toronto to see U2. This trip will be nothing like the 4 Guys in Halifax, but I am sure it will still be fun. Speaking of the 4 Guys and a Rock and Roll Band, the other instalments will be coming soon… I think.

So, let's all hope that the blessing of Achmed helps with the killing of him.

From Achmed and Me… Live Life!

Still Waiting For The Final-Final Word

Although I am a pretty patient person overall in life, I have no patience for moron drivers, slow walkers and waiting just because “That’s the way it is.”

Today I spent a fair chunk of my day trying to reach the receptionist at Dr. Batten’s office. I can respect that they are all busy there, but they let the phone ring for 7 and 8 minutes at a time before someone picks it up, and then they tell me to call back because the person I need to speak with is busy, or on a break, or gone to lunch, or not at her desk right now…. Whatever! I am really starting to get the feeling that the medical professionals in Newfoundland think that nobody, other then themselves, are busy people.

I realize that there are administrative things that have to be done to get a nuclear blast to the head, but I have been waiting for 11 days to hear when I am going to Winnipeg and today, after a number of attempts, I finally found out that my file has “been passed along” to the Winnipeg Marines and they will get back to me IF I am a candidate for the Gamma Knife. They will probably be in touch with me by the end of next week.

So far I have been told on three different medical visits that the Gamma Knife seems to be my best course of action, and the sooner the better, and now I am finding out from the people in Winterpeg that they will let me know, maybe next week, if I am eligible. I am not sure if you can tell from my written tone or not, but I am getting pretty pissed off with all this F@(%!^G waiting! Trying not to yell is probably going to mean the end of this particular keyboard!

So, after six months of testing, waiting, initial diagnosis, waiting, doctor’s holidays, waiting, final diagnosis, waiting and now while I am supposed to be planning a trip, I am still waiting. Really, why do we pay such outrageous tax dollars if the biggest part of our medical system is used up with waiting? And since I am bitching about our taxes, why then, do I have to come up with $2000 of my own money for this racket. I wonder if I can send them a bill for my waiting time and apply it against the money I need to spend?

OK, the Rick Mercer part of my update is finished now.

So, as Robbie Williams said in the song, “I sit and wait…” in the song, I believe he, or someone, dies and becomes an angel while they are waiting… good thing Achmed is benign.

Just another reason to enjoy the weekend coming up I guess.

From Achmed and Me… Live Life!

Gimme Your Areoplan Points!

I feel like I have moved from one hurry-up and wait situation to another and keep repeating the pattern. Last week I finally got the word that Achmed is indeed benign, which incidentally made me feel about 40 pounds lighter around the shoulder area in an instant, and now I am still waiting for my schedule. Apparently I am going to Winnipeg in October for my nuclear blast. I guess the medical team figure that I have nothing else to do but sit around and wait and see when that will be... it is not like I have any plans to make, such as work meetings and events or possibly a social life!

On many occasions in the past I have referred to Canada’s health care system as a sick care program, and I actually started to feel a bit bad about my criticism of it after things seemed to be moving along so well for me once I actually had a problem (or opportunity) to deal with. Well, once I got my marching orders to get ready for my ‘vacation’ in Winterpeg, I had to look into a bunch of stuff related to insurance and costs related to the treatment. The treatment itself is covered, all $17,000 of it and to my understanding I don’t even have to front the money and get reimbursed. That is a huge break for me, as any of you who deal with government payables at all will know, it takes months to get your money back or just get paid from these finance departments.

My issue is that I do have to pay for all of the ‘non-treatment’ costs! Things like transportation, hotel, food, taxis, etc all come from me. Now, in fairness to the health department here, I do get 50% of it back, after a $400 deductable, once I submit my expense claim upon my return form Winnipeg. I did up a rough budget... my bill for this is going to be between $3000 and $3500, which is for me and my chief Lieutenant (Mom) to go to the middle of nowhere and stay on the flatlands for a week (I am not allowed to travel alone afterwards, so I need an escort). Eventually, and hopefully by the time the Olympics are over, I will get between $1300 and $1550 of that back. Aeroplan points for Air Canada will cut significantly into that dollar amount, so if anyone has a few thousand of them kicking around, drop me a line:)

This situation really does piss me off though. I am very fortunate that Mr. Visa enables me to afford this financial hit, but considering the amount of taxes that I pay in this country so that we can have a “Health Care” system, it disgusts me that I have to pay anything for this. Yes, they will pay for my treatment, but seriously, how do they expect me to get blasted (and not in a good way) if I don’t go there? This is not like optional, cosmetic surgery. Eventually this tumor will likely paralyse and kill me if I don’t do something about it. Besides, like anyone, I would much rather spend a couple of thousand dollars on a real vacation not a medical one. I suppose you have to look at the bright side, better to spend the money on a nuclear blast trip than on a funeral!

So, while I sit and wait for my travel schedule, I can’t help but think about how bad this could be if I was not in a position to look after things. A number of my close friends have offered me Areoplan points and I will accept them all. Whatever is left over I am going to be looking into setting up a trust for people like me who need to travel for specialized medical treatment. I have no idea how any of that kind of thing works, but I am sure that in the interest of good corporate citizenship, the people at Areoplan will be happy to help me set up a charitable fund where people can donate Air Miles to strangers for medical travel. If everyone in Canada donated 100 miles to this plan, the fund would start off with 300 million travel miles.

So, if you are reading this, think about how many miles you have been fortunate enough to collect, and consider how many of them that you would be willing to part with so that a stranger can benefit from your good fortune.

From Achmed and Me... Live Life!

Achmed’s First Trip to The Dentist

Going to the dentist is something that has never really bothered me in the past, my teeth are in good shape and Shaun, my dentist, is a pretty cool guy to chat with. Well, at least he always used to be.

As I am sure you all know having a conversation with your dentist is not an easy task at the best of times. I have no idea how they learn to understand someone, who has a hand stuffed in their mouth, reply to those questions. Every dentist does it. They talk to you and expect you to answer them, and then they actually know what you said. It must be a speciality course in linguistics that they all take in dental school.

Another thing that all dentists have in common… they all sit on your right side. That used to be fine, however Achmed occupies the primary listening space on my right side now and everything there sounds like the teachers on Charlie Brown cartoons.

So, as Shaun and the hygienist chatted me up while they were working on my choppers, I sat there, well, lay there I guess, and responded with grunts because I was pretty sure that no matter how good his interpretation skills are, he wasn’t going to understand what I should have probably told him before he stuck his hand in my mouth in the first place. The problem with telling him in advance, or at least I thought, was I really didn’t want to throw anyone, who was going to be sticking things in my mouth, off their game by giving them some news that could potentially make them uncomfortable. Can you imagine what might have happened if that little Greek man from Halifax was my dentist? I’d probably still be in the chair with a water suction machine sucking me dry as I lay there waiting for him to come back.

Anyway, I ended up not telling him at all. He seemed kind of quite when he left the room, perhaps I grunted the wrong response to one of his questions!

From Achmed and Me… Live Life!