Thursday, October 28, 2010
A lot can happen in a year...
A year ago today I woke up in a Winnipeg hotel room, on a cold rainy day, still dark... and the first thing that came to my mind was that in theory, this could be the last time I ever get up out of bed, or for that matter, the last time that I ever even wake up at all. Although my odds were pretty good going into the blast zone, the doctors made no secret of the fact that anything could go wrong with a tumor as big as mine and so close to the spinal column. To say that my sleep on October 27, 2009 was restful and relaxing would be a gross overstatement.
Today I woke up in a St. John's bedroom, on a cold rainy day, still dark... and the first thing that came to my mind was this could be the last day that I ever wake up to life as I have come to know it. Although I was feeling pretty confidant about my MRI results, seeing how my April report was so positive, the doctors have never hidden the fact that when it comes to brain tumors, anything could happen. To say that my sleep on October 27, 2010 was restful and relaxing would also be a gross overstatement.
As it turns out, the two shitty-night sleeps on the consecutive October 27's were wasted stress. Though technically a good fact, actually an excellent fact, it doesn't change the fact that right now I am sitting at my desk completely exhausted and wanting nothing more than to take a nap... that will come soon enough.
Over the past 365 days, well truthfully it has been an 18-month journey, I have grown in leaps and bounds. I don't stress out easily, I am not a work-a-holic anymore (for the most part), I have learned to appreciate all that life has to offer and I am living a much healthier lifestyle than I was a couple of years ago. And for the first time in my life, I understand that sitting back and relaxing is not a waste of time. Achmed has been the catalyst for a fundamental change in my belief system and my lifestyle... who said that you can't teach an old dog a new trick:)
I had every intention of finishing the stories that got started along my way to the nuclear blast-zone, and I had every intention in starting the fund to assist with travel costs for people who need medical treatment that is not available where they live. Both of these things will eventually happen, although it seems that I may have put unrealistic time-constraints on my ability to perform these two tasks... you may find this hard to believe, but I am a project/program manager for my paycheque.
Over the course of this blog, I received dozens of e-mails from all over the world, mostly from people who also had brain tumors... some of whom are no longer with us; some of whom appreciated my insight and point of view; some had kind words of encouragement; and some (well at least one) thought I was a pompous ass who was making this all up. For the record, Achmed is very real, and according to the General, is now on the deceased list!
So much has happened to me in the last 12 months. I changed jobs and went to work in government (something I said I would never do); I am in a relationship with a teacher (something I said I would never do again... the relationship part AND the teacher part actually); I am in a new band (although we are not very good); and I have learned the real meaning of "Live Life", which is how I have signed off every blog entry.
I would like to finish the stories, and add a few that haven't been told, but I think that this blog has run its course and served its purpose. I will leave it public and I will still respond to all of the e-mails if and when I get anymore.
Thank-you everyone for all of your positive energy and good wishes, it has helped me through a difficult time which ultimately gave me the opportunity to learn so much about myself and about people in general. A few people have asked, and some even encouraged, me to put the whole thing in a book and to be honest, it is something that I have considered, especially in recent months... if for no other reason than to finish my stories and and possibly raise money for that medical-travel fund that I will eventually start.
I said in the beginning that if you follow this journey, sometimes you will laugh, sometimes you will cry and sometimes you will just wish that I would shut-up... based on the e-mails I received, I think I was right on all counts!
From Achmed and Me... Live Life!
Wednesday, June 2, 2010
Achmed’s First Birthday
Today is June 2nd. It is exactly one year ago today that I received the worst news of my life and deep down wished it was someone else’s problem instead of mine. Now that I look back, in fact only a week later when I looked back, it was really not a very promising moment for me… thinking up a list of people I knew, who I felt actually deserved a brain tumour instead of me. We all face our demons in different ways, up until that point I think my way was to ignore the problem and hope it just goes away on its own. Sometimes it actually works… at least temporarily; you always end up having to deal with it at some point. If you let things build up too long, you will probably deal with it in the form or a heart attack.
As I have told hundreds of people in the last year, my worst news ever turned into my best gift ever. I used to be wound up like a clock and stressed about everything. In the last 3 years, between my marriage collapse, my tumor diagnosis and my just generally living a healthier lifestyle, my heart rate has dropped 20 beats a minute. That is probably good for ten years on the tail-end of things… assuming I don’t do something stupid.
In the last 12 months a lot has changed for me, both professionally and personally, all for the better. I believe a lot of it may have never happened if I had not been faced with the opportunity to more fully embrace my potential and stare down adversity. Although Achmed is hopefully dying and shrinking, he will always actually be there and will serve as a reminder to always enjoy life and live it to the fullest, just like the picture of him on my wall above my dresser, which I look at every morning while tying my tie.
June 2nd 2009 is a day I will never forget. I will never forget the doctor saying, “Well, you don’t have post concussion syndrome, it’s a tumour… blah, blah, blah…”
I will never forget the sun shining down on my face in the parking lot of the doctor’s office.
I will never forget sitting there for a half hour, completely immobilized because I had no idea what to do next.
I will never forget the feeling of hopelessness because everything was completely out of my control.
I will never forget walking into Starbuck’s and completely ignoring everyone around me who was saying hello, and I will never forget my sister’s reaction, “We have to kill him, like that Dead Terrorist guy, ‘I keelll you!’”
Most of all I will never forget that no matter how desperate things seem, there is always hope and there is always a reason to stay positive.
June 2nd, 2009 started off very much like today did. It was sunny and I was looking forward to getting out on my motorcycle after work. I never took that ride last year, but unless it is pouring rain this evening, I’ll be taking it this time!
From Achmed and Me… Live Life!
Wednesday, April 28, 2010
Achmed, the almost dead brain tumor!
Until today, I was never really sure if the General (Dr. Batten) even had any teeth. I had never seen him smile. In fact, I had hardly ever seen him look me in the eye when he spoke. I guess when you are in a profession that regularly delivering bad news to people, and when they are probably at their most vulnerable, it pays to be able to detach yourself emotionally from the situation. I actually get where he is coming from, I have always looked at my ability to emotionally detach myself from situations as an asset to help me negotiate my best result, be it personally or professionally.
Today General Batten (still not to be confused with General Patten, which still is a good movie) was anything but detached from the news he was delivering… well at least the second part of the news. Initially, when I sat in his office, shaking every extremity with the nervousness of a school girl on her first date, he looked at me and said, “So, your hearing is after getting worse, about 10 to 15 decibels. Did you get your MRI done yet?”
Over the past few weeks, we have had a lot of fog in my lovely city of St. John’s, so if it had not been for my complete lack of vitamin D, I am pretty sure the every ounce of colour in my face would have drained right to the floor. Somehow, my MRI was sitting in the wrong pile or something like that. He went to look for it while I almost threw up with panic.
A couple of minutes later he came back with an ear to ear grin on his face and muttered something in scientific language that was so far above my head that I am still not even sure if he was speaking English. I stared at him with a blank look and mumbled back, “What does that mean?” Normally I read people pretty well, and a big smile like that would have been all I really needed to see and hear to know that even if I didn’t understand it, it was good news.
“The centre of the tumor is dead. Normally that doesn’t happen for at least a year or more, but it shows that your radiation worked and it will probably start to shrink over the next year.”
I am not an emotional person, so I didn’t jump up and hug him… and quit honestly, if I had he probably would have insisted that I don’t come back to see him anymore because he is even less emotionally involved than I am. It’s been eight hours and I am still smiling, so maybe I am a little emotional sometimes, and I got to see Dr. Batten smile… I may be the only person who is not related to him that can even say that!
I am willing to bet that it is going to take some pretty shitty happenings to put me in a bad mood over the next little while.
From Achmed and Me… Live Life!
Sunday, March 28, 2010
I'm back...
First off, I have a new job. About a month ago I did something that I always said I would never do… I became a civil servant. I have to tell you, I loved my old job and even though I had no intentions of staying there for the rest of my life, I didn’t really have any intentions of leaving it anytime soon either. Anyway, to make a long story short, a great gig came up with the Provincial Government and I decided to seize the opportunity and start my government career. My recent health crisis has me looking at things in a different way!
That made for a very hectic six week period, starting off with my vacation in Vegas that had me snowed in for an extra three days. I don’t know if you have ever been to Vegas, but I can tell you that by the time it is time to leave you are ready to go. Regardless of how much fun you have had. The snow storm in New York that had the entire airport system shut down on the Eastern seaboard had me stranded for 3 extra days in Disneyland for adults. I actually had the opportunity to get stranded in Cleveland instead. I have never been to Cleveland, and no offense to any Clevelanders reading this, I opted to keep that trend going and lose more money playing extra Blackjack instead.
When I finally got home, I had to clue up things from my old job, then get started on my new one, take a trip to Halifax, then take a trip to Labrador and still get everything finished and started. It seems for the first time in a while I have a relaxing evening ahead of me.
Three of the four guys have finally started a new band and though we don’t have a name, for the first time that I can remember, I look forward to Mondays! Monday night is our regular rehearsal time… at the pace in which we are learning new songs, it might be fair to say we are practicing as a retirement sideline for when we hit our 60s!
So, now to Achmed… things are going pretty well, more or less. The numbness in my hand is gone; the numbness in my face is gone; the roaring in my head has stabilized; my hearing seems to have stopped getting worse; and my balance sucks. These are all good signs. The fact that my balance is so bad is actually a possible sign that Achmed is shrinking or at least relieving some of the nerve pressure and my body is readjusting to the way it used to be, pre-Achmed.
Now, just because all this is good doesn’t mean that all things are cherry in my head. For the past few weeks I have been falling out of my chair, walking into walls, nailing door-frames with my shoulder whenever I pass through one and pretty much every time I turn around, I almost fall over. In fact, I think that Achmed is indirectly, at least partially, responsible for the tendinitis I have in my right elbow. I can’t remember doing anything to actually injure my arm, but based on the tenderness of my joint and the amount of times I have hit a door-frame with it in the past few weeks, I think my recovering balance has inflicted a case of tennis elbow on me. I realize that sounds kind of funny, but I can assure you with the utmost of confidence, I am not even partially laughing.
This week, Wednesday to be specific, I am going into the MRI lab again to get an internal head-shot. They won’t really be able to tell me if the surgery was successful, but they should be able to tell me if something went terribly wrong. I guess that means that no news will be good news!
Maybe I will see if they can take a shot of my elbow while I am there.
From Achmed and Me… Live Life!
Thursday, December 31, 2009
The End of an Era...
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!
Thursday, December 24, 2009
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
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!
Thursday, December 3, 2009
The Slow Deal to Heal...
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!