Friday 28 October 2016

The side effects of a brain tumour (blame it on the meds)

It’s 3:07 am on Friday morning October 28 and the drugs are definitely working. I can confirm that 100%. Not a big fan of the drugs. Dexamethasone is a powerful steroid medication essential in treatment of brain swelling and promotes healing, and is on the "WHO Model List of Essential Medicines" among the most important needed in a basic health care system. One of the side effects is euphoria, which is pretty good, but the next one on the list is depression, and the list of side effects is quite a long one. Dexamethasone is the reason why I placed the milk carton in the cupboard the other day. Dexamethasone is to blame for a lot of strange things going on around here these days, and my poor wife Kathryn will attest to that (oh by the way Kat sorry about the hammering in the bathroom the other night at 2:53 am).

It seems like I’m currently in “Wait Mode #2”. The first was a difficult 15 day wait between my surgery and finding out that the tumour removed was cancerous. Now, I await news from my doctor who will be arranging for all the tests to find out where the cancer exists in my body (the one found was likely a secondary tumour) and what the plan of action will be to fight it.

Well I guess on the bright side I could almost convince myself that I’m on some weird kind of vacation, high on a pretty interesting drug that seems to be bombarding me with creativity and ideas day and night, so should I just relax and enjoy this new found free alone time and try not to think about the reality of the situation? I’ve been wanting some free alone time for a while but must admit was not expecting to get it this way. I spent 5 solid days obsessively placing guitar hooks on my wall and turning my office into an office / jam room complete with amplifiers, drums, and my recording gear. I’m playing a lot of guitar and drums, and also getting heavily back into some volunteer video editing for 2 local organizations Bracelet of Hope and Stanley Stick Hockey Association.

But the most fascinating part of my experience so far has been the reaction of others to my situation . . .

The other day I went to Sears to purchase a new shaver, and while paying at the cashier, the cashier next to mine, a very attractive and refined looking middle-aged woman, noticed my 4 ½ inch gash which was partially covered as the stitches had just come out the other day (Dr. C ruined my Halloween costume). She asked me in a rather loud voice and very strong European accent what I had done to my head? I told her I had surgery. She continued and seemed to want to know more. I told her that I just recently had a brain tumour removed. She kept going so I kept going, and I just simply told her the truth - that the previous night (Sunday) I found out it was cancer. She asked me if I had children. I replied that I had two children ages 8 and 6. 

At this point I could feel eyes upon me. There were 3 other cashiers looking our way. There were about half a dozen people in the lineup also looking our way. Her voice seemed to get louder as we exchanged words and I feel like mine got softer, but somewhere along the way, mine started to get louder and by the end, she almost shouted words of encouragement at me and added that “I wish you all the best from the bottom of my heart” with both her hands clutching her heart and this look of genuine concern and compassion on her face.

I was really moved by this woman. I thanked her many times as I took my purchase to leave, and repeatedly shouted back to her my thanks and appreciation for her concern and thoughtfulness. People stared but I didn't care. I left Sears literally in tears. As I left the store into the mall, an elderly woman noticed and looked at me with some bewilderment as I still had some tears flowing so I mumbled “it’s the drugs . . .”.

I had another experience which proved to be quite different when I went to have breakfast on my own at the local Williams Fresh Café. I ran into a former business colleague who at first didn’t recognize me and in fact seemed to believe that I was the new prospect he was meeting at the café. After straightening that out, he asked me about the rather large bandage that I had on the side of my head which could be seen even though I wore a hat. I told him that I just recently had surgery to have a brain tumour removed. Just like the cashier at Sears, he "kept going" except that his “going” meant abruptly ending the conversation and making a quick get-away over to the far end of the café upon receiving my business card. I wasn’t offended at all. I understand that people have different ways of handling these situations, but I wasn’t sure whether to laugh or cry (ie: which Dexamethasone side effect will kick in here) when I received an email from him the very next day with Subject Line “Great Seeing You”:

How fortuitous that we met yesterday. I hope all is well with you. If I can ever be of any assistance or offer advice for your business needs please let me know. If you know of others that can benefit from my services please feel free to pass this pdf on. Perhaps we could get together for a coffee the week of October 31?”.

Hmmmmm, should I actually take him up on the offer to have a coffee the week of October 31 and find out if he knows what a brain tumour is, and also perhaps inform him that cancer is not contagious? What the heck I have time on my hands and could use some new material for my next blog entry.

Some people just never know what to say at a funeral, for example. “Sorry for your loss” seems like an obvious thing to say, but I admit that until I lost my father a few years back, I didn’t really know what to say either. Having gone through it, though, makes it much easier because you can now relate to what the other person is feeling.

I think the same goes for this situation as well. I’ve noticed such a wide range of reactions to my current medical situation. I can’t speak for others, but in my case, I want to talk about it. I’m OK if you ask me about it. I want to learn more and hear stories of survival. I’m interested if you have a friend or family member who has gone through a similar experience. I appreciate it when people share their stories with me.

Also, when I say I’m “resting” at home, it doesn’t mean I’m lying around in bed all day in agony. Actually quite the contrary. I’m having a nice steady flow of neighbours and friends dropping by and although I don’t want to say it’s been great, I’m going to have to admit that it’s been great. My friends have really moved and inspired me, and I thank you all for that. I’ve said before that the support that both Kathryn and I feel is overwhelming and I just can’t stress that enough.

Each day on the news we read about tragedy, but it’s amazing that time and time again it’s the humanity and compassion of human beings that prevail and shine through.

Thank you, thank you, thank you – to all my amazing family and friends who are helping me get through this absolutely terrifying time. Yes, it’s terrifying and I’m scared. I love life and I want to live.


Tuesday 25 October 2016

Two in Six: Why Me?


Many times when something bad happens to someone, when tragedy strikes, people tend to ask themselves "Why Me?"

For the second time in six years, I awoke in a hospital bed unexpectedly connected to many wires and machinery and full of drugs. As I regained consciousness from the surgery, I became aware of Margaret, a nurse in the step-up unit at the Hamilton General Hospital. I overheard her as she walked around the unit helping out her patients. As I listened to the way she handled patients and dealt with the other staff, I immediately knew that once I awoke I was going to like Margaret. She had a personality. She seemed to be a genuinely nice person. I looked forward to meeting her.

The saying “Déjà vu” is defined as “having the strong sensation that an event or experience currently being experienced has already been experienced in the past”. Six years ago, I was in a hospital bed at Sunnybrook hospital in what was the biggest shock of my life. It began as a normal evening at home in Toronto and I started playing the drums. It was something I was doing at the time on an almost nightly basis. I was working on mastering two extremely difficult songs both physically and technically. I have an electronic drum kit so I run the song through the amp and then play along to it, sometimes through a live amplifier but most times on my own with headphones.

Green Day and Blink 182 just about killed me.

So, on August 25, 2010, as if by some miracle, Kathryn's niece Sarah happened to be downstairs with me as I asked her to check out my masterful drumming. The Green Day song "American Idiot" went without a hitch, but something happened when I played "Give Me One Reason" by Blink 182. I started to feel tired and then weak. I think I told Sarah that I need to practice this more. Really, all I remember is that I awoke in a hospital bed 2 days later after being in a drug induced coma (ah that explains a lot some of you may think). I was in good shape at the time, playing hockey 3 times per week and even won a tennis ladder at the club. How could this happen to me?

Sarah screamed for Kathryn, terrified and shaking uncontrollably. She was only 15 years old at the time, what an ordeal to go through. Kathryn came downstairs and performed CPR. The paramedics came and I was on my way to Sunnybrook hospital. Kathryn's calmness and ability to remember and perform the CPR correctly in fact saved my life. While in hospital, the first doctor to come to see me to address my situation told me that it was not a heart attack by traditional definition, but a failure of my heart's electrical system and the name he gave it was "Sudden Cardiac Death".

So, if you like to gamble or are into statistics and numbers, then let's have a look at the odds that I am even here today alive and writing this blog.

The doctors at Sunnybrook told me that only 2% of people who have "Sudden Cardiac Death" survive. This is no typo, we're talking 2%  ! Compound that with the fact that I was doing so much drumming that week, and it happened to be the week that Sarah came to visit us from Montreal. She just happened to be there that one time that I collapsed. It's hard to calculate these odds when you stack these two things together but bottom line: I have no business being here today, I am so fortunate to be alive that to me it's just beyond comprehension. It's something that I think about every day.

I recently watched the Netflix documentary Tig, about stand-up comedian Tig Notaro was diagnosed with cancer in both breasts in 2012. Upon finding out she had cancer, she addressed it to open her stand-up comedy show. There is no video of the event but an audio recording was made, and it eventually went viral and led to the Nextflix film. Tig agonizes over the death of her mother, and then a very short time later, is diagnosed with cancer. She questions how two things like this could happen to her, thinking perhaps that after the first, she would be somewhat immune or free of tragedy for a while. What the heck does God think he is doing? You already got me, I've already suffered?

It's interesting, I don't really feel that way. Actually, I thought I would. I just feel lucky. When I look at my life today, I've never been happier. I have an incredible wife, Kathryn, who is the most amazing person I've ever known in my life. I have two fantastic children, Shayne and Anika, ages 8 and 6, and they amaze me each and every day with everything they do and achieve. It's hard for me to believe now that when I met Kathryn, I was not interested in having children. I owe everything to her for being patient with me and helping me overcome some serious fears which were strangling me from past experience. Where would I be today without her?

My career was going well even though I had some major setbacks from 2011 through to early 2015, but somehow things had turned around in a big way in 2015 and 2016 and it's never been better. I'm involved in some amazing local community efforts and have been fortunate to have met so many incredible people and neighbours along the way here on my favourite place on earth, Guelph, Ontario (I love my Guelph)!

Things were going so well . . .

On Sunday night, October 23, 2016 at 8:19 pm, I got the call. What started out on October 4 as blurry vision, headache, and a possible infection has now become something alien to me. Dr. R, the neurosurgeon who performed the left craniotomy to remove the brain tumour personally called me at home with the news. It was the news we were anxiously waiting for after an agonizing 15 days. Kathryn was with me. We had him on speaker phone in my office-jam room.

"It's cancer".

This week I will be going for tests to find out what it's all about. Dr. R believes it's a secondary tumour. I've had chronic back pain since the middle of August so it's very likely that there is a link. My sister Sue is a physiotherapist and she mentioned getting an MRI done back in September, but this was complicated by the fact that I have an ICD device implanted in me from my previous heart issue back in August of 2010 and therefore unable to have an MRI done unless the ICD is removed. I'll be going for many tests this week and then a plan will be put in place to help me with the battle.

To all my friends I can't express enough how completely overwhelmed Kathryn and I have been because of the friendship and kindness of all of you. Kathryn keeps telling me how she can hardly keep up with just answering some of the offers of help and kindness that you have all shown.

It's been very difficult to keep everyone informed hence the reason I started this blog. I love to write, and I need to keep people informed, so it just made sense to create this personal blog to document this experience.

I have some truly incredible stories to share with you of my experiences over the past two weeks, and I plan to use this blog to share some of these funny, inspiring, and sometimes crazy stories.

So, I survived the "Sudden Cardiac Death" and now I've just been diagnosed with cancer. Am I going to ask Why Me? Why this again?

No, I'm not going to think like that - I'm just going to win.