Thursday 15 December 2016

Right here, right now

Last night I watched the short documentary film “Cristina” on Netflix, the story about an amazing 37-year old woman with cancer and her ongoing battle with the disease. Although our cancers and situations are quite different, I could still however relate to much of what Cristina went through each step of the way in her journey, and of course, was pulling for her right until the end in her courageous battle.

Cristina made some very powerful and meaningful observations and quotes which I could relate to and that really inspired me.

Every day counts. The blessing of cancer is living right now. It’s almost like the closer you are to dying the more alive you become, and that to me is really the truth

After watching this film, I began to once again think about the concept of “enjoying the moment”, something that I have thought long and hard about particularly in the past six years since surviving my heart incident against those crazy odds.

It’s easy to say things like “enjoy life”, “enjoy the moment”, “love your family”, and “appreciate what you have” - but actually “living it” is much more difficult and something that we don’t always do. It shouldn’t have to be this way. Sometimes we may feel guilty about perhaps not always “living” this way in our daily lives, but the fact is that our lives are busy and we are constantly under pressure at work, at home, and within our family/children and relationships. It’s not always easy to just sit back, take a deep breath, and slow things down and enjoy the moment. This is perhaps where yoga and meditation comes in. I started getting back into yoga a few weeks ago and it’s helped a lot.

It’s unfortunate that in today’s society we tend to measure a lot of things in dollars, but this is the world we live in. Particularly when we compare different jobs, job titles, levels, careers, we always tend to look at the hourly wage or annual salary. Satisfaction and time don’t seem to fare into it as much, yet these are factors that greatly contribute to whether you find happiness or misery in your work, and whichever that is, it trickles down into every aspect of your everyday life.

Many years ago I left a fairly stressful but high paying job for a lower paying, low stress job, one that allowed me to work regular (normal) hours, something I hadn’t done for many years. I came to realize how important it was to have that stress removed, and to have all that extra time to be able to do things that were previously not possible. It definitely allowed me to have a look at things from a completely different perspective, and to subsequently become aware and have an appreciation of a different way of measuring and prioritizing what is important in life.

Right at the very end of the documentary film, Cristina talks about how she feels that perhaps her purpose in life was to tell people to “Wake Up”. In her own words:

Tomorrow is never really there, yesterday is definitely gone. So right now is the only gift you have and that is what you have to share with everybody

As I watched the film last night, I hoped for a happy ending. I was somehow thinking that it might end with Cristina beating the disease. I realize of course that at these stages you can’t ever beat it as becomes an ongoing, lifelong battle, but I was still hoping that it would end on some sort of a positive note.

Sadly, Cristina Weigmann lost her battle with cancer 5 months after her second cancer diagnosis (she initially had breast cancer and it returned). Doctors had initially told her that she could have years to live, which gave her hope, but it was not meant to be. I’ve also had a number of different opinions and prognosis over the past few weeks but it’s one of those things that you can’t rely on or think about too much, particularly since the variables seem to change almost daily. The best you can do is to remain positive and optimistic and hope for the best.

Cristina's life and words have inspired me and will have a lasting impact. She is 100% right, all we have is “Right here, right now”.

Tomorrow I will have my blood test which will determine whether my cancer treatments have been effective or not, and I will likely know the results next Wednesday. The best case scenario would be that my PSA levels have dropped significantly in response to the cancer medications and that the current method is working. So, as per usual, a few more days of waiting and suspense - something that we’ve grown accustomed to over the past couple of months.

I will keep you all posted with the latest news. In the meantime friends enjoy each moment that we have here on this earth and appreciate life, I think it's the best we can do!



Documentary: “Cristina”, Director Michèle Ohayon - http://www.cristinathemovie.com/


Wednesday 7 December 2016

One day at a time

It’s always interesting to see how things can change. One day you’re up, another you’re down – one day there is good news and the next there is not so good news. The title of my last blog post was “Prognosis positive” because it was just confirmed that the root cause of the cancer was prostate, which was a much better prognosis had it been upper gastrointestinal (stomach or esophagus).

This past week I received the results of my prostate ultrasound and biopsy and the news was not so great. In terms of prostate testing, a benchmark called the Gleason Score was developed using values going up to 10. Patterns of cells in the prostate tissue are evaluated and the most common cell pattern is given a grade of 1 (most like normal cells) to 5 (most abnormal). The two most common grades are then added together to make the Gleason score.

A high Gleason score (such as 10) means a high-grade prostate tumor. High-grade tumors are more likely than low-grade tumors to grow quickly and spread. Unfortunately my Gleason score has come back as a high value of 9.

I have now been put on a combination of medication and injections to treat the cancer, and currently, these methods are being using to treat not only the prostate cancer but the cancer found in my bones and spine as well. In two weeks, my doctor will evaluate my blood PSA levels to see how I have responded to these cancer treatments so far. This will be a big test and then determine the next course of action. Hopefully I will receive an early Christmas present the week of December 19 when the results are in and hear that I am responding well to this current plan.

Over the next week I will be finally off my dreaded Dexamethasone steroid medication which is welcome news for me (and my family for that matter!). I’m hoping that after I get off this drug I will be able to drive again, work full time, and things will start to slowly get back to normal again (or as normal as they can be at this point).

Overall I feel good. It’s a nice time of year. We’ve just put up our Christmas tree and the kids are really excited about the holidays. Kathryn has booked our vacation and the plan is to spend the holidays with my family, then Kathryn’s family in Montreal, and fly to Europe and visit Croatia, Paris, France, as well as a stop in Zurich, Switzerland. We’re all really looking forward to this trip and I know that it will be something that we will never forget.

Yesterday I received a second delivery of incredible Edible Arrangements from Susan and Doug – 2 boxes worth! Both boxes were finished within 3 hours – it was actually a bit embarrassing (those chocolate covered banana things are crazy Susan I won't tell you how many I had!!) - thanks Susan and Doug it was just what the doctor ordered and thanks once again to all my friends and family for your concern and well wishes. As always it’s much appreciated and I will continue to keep you all posted with my news.

Decorating the tree


Sunday 27 November 2016

Prognosis positive

Prognosis is a medical term for predicting the probable course and likely outcome of a disease or serious medical condition. I don't envy any doctor or health care professional expected to deliver a prognosis to their patient. I've had a few different ones over the past two and half weeks, each one varied and in each instance time had elapsed, variables changed, and ultimately the prognosis changed. After many visits to the hospital, appointments and tests: CT scan, bone scan, gastroscopy, colonoscopy, ultrasound and biopsy of the prostate, it appears certain now that the root origin of my cancerous brain tumour is prostate cancer which in the opinion of the doctors is one of the best case scenarios as far as prognosis goes. So, despite the fact that it's spread to my bones and spine it’s still positive and welcome news for me!

I am a numbers kind of person. I am a programmer into statistics and analytics, and for the most part see the analysis of data as necessary and useful.

In March of this year, I purchased a FitBit fitness tracker for the main purpose of monitoring my heart rate on a more consistent basis, but after a few weeks, found that I began using the step tracker feature more. The FitBit was programmed with a default daily goal of 10,000 steps (about 7.5 km), such that if you achieve your goal, it does this little celebration for you and flashes a message of your achievement on your watch display with a slight vibration.

In the middle of April, I decided I was going to walk 10,000 steps per day for 365 straight days, regardless of the weather, regardless of how I was feeling - no matter what - 365 days of 10,000 steps or bust - just like that old postal service saying "neither rain, nor snow, nor sleet, nor hail".

Unfortunately, my FitBit streak ended at 174 days on October 4, 2016, the day my tumour emerged from behind my eye - a day that I could not get out of bed, eat, or sleep. It was a competition in a way -  with myself, but one that I was not able to achieve nor could I have ever imagined that in fact that a tumour was going to be the reason for the end of my streak and ultimate goal.

In general, I see competition as a good thing. At a young age I almost became obsessed with winning and sometimes used numbers and statistics to help achieve my goals. Embarrassingly, when I was in my 20's, I used to keep track of all my tennis scores at the club with the ultimate goal of going an entire season undefeated. I achieved this goal in the year of 1987 with 43 wins, 1 tie (due to rain), and 0 losses. Am I bragging right now - OK maybe? I’ve since matured somewhat (maybe a little), not so obsessed with necessarily winning, but still very much into the statistics and analysis.

Numbers and analysis can be a good way to help you drive and achieve goals, but numbers can also make you crazy and have a negative impact on your attitude and future.

Since this whole experience began, I’ve actually gone out of my way to avoid numbers and statistics. I’ve refrained from looking at odds, prognosis numbers and percentages particularly with so much information and misinformation out there on the internet. I look at other professions such as real estate agents or financial advisors, and the fact that every day they are out there performing analysis, making predictions, and advising clients based on the most recent data, but in the end, nobody has that crystal ball and can really know for sure as has been proven time and again.

So, it appears certain now that I have prostate cancer. Was it preventable? Should it have been detected years ago? Should I have insisted on a prostate screening back in my 40’s (I am now 52)? Do I need to warn all of my male friends in their 40's and 50's to immediately see their doctor about a prostate cancer test? These are the things that are going through my mind at this time, so I started doing some research.

I found some good and reliable medical guides on screening and tests that you should get done in each of the different phases of your life, starting in your 20’s. Of course, this list gets much longer by the time you reach your 40’s, 50’s, and beyond. The 50’s list alone includes screening for prostate cancer, screening for colon cancer with fecal occult blood testing, sigmoidoscopy, colonoscopy, screening for testicular cancer including monthly self exams, cholesterol testing, screening for type II diabetes, screening for skin cancer, oral cancer, lung cancer, sexually transmitted diseases, and believe it or not, there are more . . .

So, how do you manage this? How is it possible to keep up with all of these tests and screening? If there is any advice I can give at this point, it’s simply to make sure that you have a family doctor, work together to understand the tests and screening that can be done, and ask for help in scheduling these over the course of many years. Seeing a list like this can be overwhelming, but your doctor can be seen as your coach or manager - recommend and schedule, and help you to prioritize.

I continue to have so many memorable and meaningful experiences, and need to thank Kathryn for putting up with an almost-crazy person at times and being patient and amazing. New drugs and the mix and variations have proved challenging at times (remember, blame it on the meds?). Our kids have also been incredible. We've spoken to them about cancer and what Daddy is going through, and they are incredibly understanding and courageous and go out of their way to give me extra love and attention whenever possible.

Thanks to my neighbour Anne for that awesome pot of soup which lasted the entire week I loved it! Thanks for all the incredible visits and chats. Thanks to Elizabeth (the lady who prayed for me on the patio at Eric the Baker) who came to my house the other day to hug me and pray for me. Thanks to the cab driver who refused payment, gave me a rosary, and told me his church will be praying for me on Sunday (I had never met this man before).

Thanks for the music my good friends Jamie, Paul, George, John - we’ve had some fantastic musical moments and jams over the past two weeks and I look forward to more. The music night I previously mentioned is currently in the works and I will keep you all posted whether you want to come out to play or just watch and be with friends.

Two weekends ago my best friend/best man Joe (my twin brother different mother we are born on the same day same year!) and wife Lucy came to visit us at the cottage, and as I was standing there with both Joe and my wife Kathryn together, I came to appreciate that I was in the presence of the two people on this earth outside of my family that have had the most positive impact on my life. What a moment that was to have that realization - one of those special moments you never forget.

We still have a hurdle or two to overcome, but if all goes well this week and next, we will be planning our trip to Croatia and Paris, France. Cousin Pero: "Bookie" is on it!

Thank you so much to all my family and friends. I continue to be amazed and inspired by all of you. I am one very lucky person.

My good neighbour, Elizabeth 



Thursday 17 November 2016

Love life

My father, Anton Gal, came to Canada in the 1950s from the former Yugoslavia (Croatia) after the war along with three friends in the hopes of a new life, to one day settle in, raise a family, and make a better life for his future children and family. He spent time working hard chopping trees in northern Ontario before finding a job as a tailor at Simpsons. He met my mother a few years later, they married, and although they had no knowledge of the English language, were not highly educated or connected - through sheer hard work and dedication were able build a life in this country and in my opinion achieve the greatest of success.

My father passed away on June 29, 2009. He died in my arms. He was surrounded by family, but I was the lucky one to be able to hold him one last time as I begged him to let go and end his long suffering.

In 2004 my father was active at age 83 and walked between 8 and 10 km per day. He would stop and chat with all the neighbours and in the winter months, do his daily walk over at the local mall where he had his group of friends that he made there. We teased him about his “girlfriends” at the mall. He always had a smile on his face and spoke and got along with everyone he met.

It all started with loss of balance and then sudden falls, but over the course of 2004 and 2005, my father became unsteady and eventually had difficulty walking. Over the next 3 years, we visited many doctors and specialists, he was given countless drugs and medication, and finally diagnosed with Progressive Supranuclear Palsy (which is essentially like a slower, prolonged version of Amyotrophic Lateral Sclerosis (ALS - also known as Lou Gehrig's disease). He soon ended up in a wheelchair and required the help of caregivers.

Over the next couple of years we watched helplessly as he deteriorated until he finally passed away in 2009. It was an extremely difficult time for the entire family, particularly my mother and sister Sue who dedicated their lives to helping him so much in those final years, months, weeks and days. Talk about true love.

My father battled through his illness but always remained positive. We were amazed by his attitude despite being in extreme pain for such a long period of time, and he always retained his sense of humour and love of life right until the end. My mother always noted how he never complained. He's my hero.

Today, I communicate with my father on a regular basis, and he is helping me through my current situation by telling me that regardless of the outcome it will be OK. I firmly believe it's the spirit and motivation of my family and others that have completely filled me with a new level of love and hope -  something that is hard for me to describe but it’s there and it’s strong. I’ve always been a spiritual person since childhood but what I’ve experienced recently is something truly special and beyond what I have ever known before this.

This past weekend we were in Stratford attending the play "The Lion, the Witch and the Wardrobe" with the kids and our great friends the Barbours, who have four kids of their own. What an amazing weekend we had with Jim, Carrie, and their incredible kids! On the way back on Sunday morning, I was happy to be invited by our friends Anne-Marie, Tracey, Rob and Marian to the Grace Community Church. Shayne and I went, and very early on in the service, Pastor Todd asked the entire congregation to join together to pray for me. Linda, who was standing beside me, held me with her hands very tight to my heart. I trembled and my heart just raced as Pastor Todd asked for prayer, and was overwhelmed by the kindness and generosity of everyone. It was extremely emotional and a moment that I will never forget.

Since this all began, so many people who care have sent me their kinds thoughts and words, suggestions, ideas, links to articles and videos, books, stories about their loved ones and friends battling cancer, alternative cancer treatments, it just keeps going and going . . .

I just want you all to know how much I appreciate it and that I’ve been open to all of this and have in fact tried a good many of them along with lots of  reading and watching of videos. We learned a great lesson just over four years ago when we moved to Guelph from Toronto that being open to new things and ideas can open up a new world and the move here ended up being the best thing we’ve ever done (aside from having our kids)!

Throughout this journey, we’ve been so impressed by our health care system and all of the amazing individuals we’ve come across. People like the receptionist at the Imaging Centre of Guelph General Hospital, and how she happened to hear about my heart issue and started asking me about screening of my sister and kids. She was going way beyond what I was there for and I could tell by the look in her eyes that she was genuinely concerned and really cared about me.

Each time I see my family doctor, Dr. C, and nurse K, I can feel their compassion and concern. It feels much more than a patient-doctor relationship. I feel as if they are going through this with me. I feel lucky to be in their good hands, trust them 100%, and want to thank them for all they have done for me so far.

The staff at Grand River Hospital and Grand River Regional Cancer Centre have also been so amazing, every single one of them, and we have been impressed by how they have done things efficiently and “on the fly” starting with my quick and urgent start of radiation treatments last week to alleviate my obvious back pain. Thank you to everyone there!

Philanthropist and former co-CEO of RIM / BlackBerry Jim Balsillie and wife Heidi donated $5 million and raised more than $44 million for local hospitals for major redevelopment projects, including the Grand River Regional Cancer Centre. The Balsillie’s donation was the largest gift ever made to health care in the region. When you go through something like this and are able to take advantage of a world class facility like this Cancer Centre and it’s amazing staff, it really makes you appreciate the kindness and generosity of those who go out of their way to contribute to such worthy causes in helping others.

Today is Thursday, November 17, 2016, and I now have two days of fasting where I can only drink water and have soup broth. It’s 9:30 am and I am very hungry, but I suppose I better get used to it!

I am scheduled to have both a Gastroscopy (examination of the upper digestive tract - esophagus, stomach and duodenum - using an endoscope - a tube with camera) and Colonoscopy tomorrow (Friday) and likely these two tests will be the final ones to determine the root cause of my cancer. Yesterday, I completed my 5th radiation treatment which was aimed at the spots/cancer that were found on my spine and in my bones and back.

We remain hopeful and I am appreciating every single day and ever thankful for my friends and family. I still have a lot to achieve, but in the immediate future, there are two things I want and need to do by the end of this year: arrange a music night at Manhattans and travel to Europe with my family.

Within the next week or so I am going to arrange a music night open mic with friends at Manhattan’s in Guelph. It will likely be a Sunday afternoon or evening early in the week and I plan to bring my drums, amplifiers, guitars, instruments and have a kind of open jam with friends going up and performing. I will let you all know!

The other thing that Kathryn and I have talked about is a trip to Croatia with our family between Christmas and New Years with a stop in Paris, France, a place that my 6-year old daughter Anika has dreamed of going. I want my kids to know my relatives in Croatia as I have known them from the time my parents took me there a young child and I can’t wait to take a photograph of Anika beside the Eiffel Tower!

I will be meeting with my oncologist in the middle of next week and will likely have more news as a result of my Gastroscopy and Colonoscopy tests on Friday.

My good friend Jamie Mitges, who is a world class musician and composer, composed a beautiful song for me the other day which he called “Love Life”. So, hug your kids and loved ones, breathe in the air, appreciate each moment – and love life!














Thursday 10 November 2016

Another day like no other

Yesterday I received more bad news. It was a day like no other. It’s the third time in a month that I had this kind of “day like no other” which revolved around some bad news.

The first was on Tuesday October 11 when my neurosurgeon Dr. R delivered the news to me just before my discharge from hospital that an infection had been ruled out. My heart sank. I found myself alone in my hospital bed. My first thought was about Kathryn and my kids without their daddy. It was horrifying.

The second was on Sunday October 23 when once again Dr. R shocked me with the confirmation that the brain tumour and tissue found was in fact cancer. My first thought was about Kathryn and my kids without their daddy. It was horrifying.

Yesterday, Wednesday November 9, 2016, I had a series of appointments at Grand River Hospital in Kitchener/Waterloo starting with the medical oncologist Dr. B and radiation oncologist Dr. G. They went over with us the results of the various tests that I have been going through over the past week: CT Scan, Bone Scan, and Gastroscomy consultation. The tests were revealing. It showed spots on my spine and in my ribs and bones, and seemed to confirm that the back pain that I have been experiencing since the middle August is in fact the cancer. They believe now that the main cancer is somewhere in the Gastrointestinal (GI) tract likely the esophagus or stomach. Either way, they went ahead yesterday and got me started on radiation treatment which I will continue through to next week.

Yesterday was a blur. Altogether, the cancer centre at Grand River had arranged a total of 8 different appointments between the hours of 9:00 am and 5:00 pm when I was able to get my first radiation treatment. It was quite amazing. Kathryn and I were very pleased with the professionalism and compassion of every single member of the hospital staff that we encountered.  After the medical oncologist and radiation oncologist, we met with a registered dietician consultant to talk about food and diet, had a radiation planning CT Scan done, met with a social worker to mostly discuss how best to discuss these issues with our children, and finally the first radiation treatment. They believed that it was important to begin radiation treatment immediately regardless of whether they have pinpointed the root cause of the cancer because they were now certain that it was in the bones and spine and that it could hopefully relieve some of the pain that I’ve recently experienced with my back. At the end of next week I will get a Gastroscomy and Colonoscopy which will reveal more and hopefully pinpoint where the cancer is originating from.

This primary/secondary tumour phenomenon that I have is actually called metastatic carcinoma which is defined as the spread of cancer cells from the primary site of origin (where it started) into different areas of the body. As medical oncologist Dr. B described to us, the scan showed thickening at the place between the esophagus and the stomach and she believes that the likely primary site of origin is likely stomach cancer. She does not think that it can be cured and believes it can be treated with a good chance of getting it under control. We plan to seek out other opinions and options and do our best to learn and hopefully get help in living my life as long as I possibly can. I have too many things to achieve and need to be here for my family for as long as I possibly can.

Yesterday was indeed a shock, but to be honest, my constant back pain over the past few weeks had me convinced that this is the news that was to come. I have already prepared for it and accepted it and know that I just need to deal with it the best way I can. As much as I’d like to scream, complain, curse, break, throw, hurt, or protest, I just can’t seem to get there and it’s interesting because I always thought I would. I just can’t help but look back at my life - my 52 years so far, and just remember in amazement at all of the good that’s happened and how I came to this point. Six years ago I survived the Sudden Cardiac Death, of which I was told only 2% of those who experience it survive, so I already feel that I’ve been given a full 6 year life extension. The way I look at it now is that every single day is a bonus. Every single day is precious. Looking up at the sky, seeing my children’s faces, spending time with Kathryn, with friends, and just breathing in the fresh air are all things that are precious to me right now. This all makes me very happy, and I do feel very happy today.

Last night, my good friend Jamie Mitges invited me to play music with him at Manhattan’s in Guelph, along with our new friend Fredrico from Italy. What an amazing night it was. After a day like yesterday, it was just what I needed. Jamie, Fredrico and I had one rehearsal together earlier in the week and then played and so many of my amazing friends including my sister Sue came out to watch. Thank you so much to everyone who came out yesterday, many of whom surprised me. To end this “bad news” day with such a special evening was truly a blessing.

It was a day that I will never forget, followed by a night that I will never forget.

First radiation treatment followed by "Music Therapy" at Manhattan's in Guelph with good friends:










Thursday 3 November 2016

The waiting is the hardest part

"To make me wanna live like I wanna live now
I said yeah yeah - yeah yeah yeah yeah . . .
The waiting is the hardest part
Every day you get one more yard
You take it on faith, you take it to the heart
The waiting is the hardest part"

Tom Petty and the Heartbreakers, 1981 (album Hard Promises)

My dear Kathryn likes to plan things out in advance. A few years ago when my cousin Pero from Croatia came to stay with us in Toronto for a few months, he called her "bookie". She loves to book trips, weekends, getaways -  yes she's a real planner. As you can imagine, the situation we are currently in is not ideal for someone like Kathryn. Am I going to be here another 3 weeks, 3 months, 3 years, or 30 years? This we don't even know at this point, and with or without the Dexamethasone steroid medication that I'm on, it can almost make you crazy sometimes. But, as the sitcom character Baboo once said on the show Seinfeld, "The Wheels are in Motion". I have a string of appointments lined up in the next week beginning today (Thursday, Nov. 3), including CT Scan, Oncologist, Radiation doctor, Gastroscopy consultation, and much more to come. My back has been bothering me a lot lately, which I'm now convinced is linked to the tumour, so I'm very anxious to get these tests over with so that we can find out what is going on and then deal with it in the best way possible.

I want to thank all my visitors, friends, and neighbours who have come by to see me and those constantly offering help and well wishes, you have no idea how much it means to me. It's really been nice talking with you, reading your advice and survival stories, and believe me I feel the warmth and concern from all of you. I even continue to experience it every single day from perfect strangers.

Phil and I were sitting outside at Erik The Baker's a couple of days ago and a woman next to us, who happened to be speaking to her friend about faith and religion, noticed my scar and eventually upon finding out about my cancer, began to pray for me. Really loud. Really, really loud! I could see the look on Phil's face as she called on the Virgin Mary. Phil later suggested that I name my next Blog entry "Bringing out the Big Guns". She had tears streaming down her face as she prayed "please help Ed, help him to be strong - Mother Mary give him strength . . .". When she was finished about four minutes later I gave her a big hug and thanked her. I was moved, I was grateful.

On Sunday and Monday I did a "Toronto Road Trip" and saw a number of my good friends: hockey buddies on Sunday night, the musicians at the Supermarket Free F'all Sundays open mic, my former colleagues at the Swiss Bank, good friends, and as an added bonus saw my amazing incredible sister Sue on the Monday just before heading back to Guelph for Halloween with the kids. Sue came all the way down from Richmond Hill to midtown Toronto just to see me for a brief 20 minutes. My Sunday night accommodations at the "Hotel Hugh and Nora" were 5-star all the way!

On Monday morning, I took a taxi cab from Hugh and Nora's house downtown to my former next door neighbour and good friend Scott's place in our old Toronto neighbourhood in midtown. My cab driver was a very nice Indian gentleman named Kumar. We had such a great conversation I really enjoyed speaking with him. He just seemed like a really nice, genuine, warm-hearted person. He was very curious about Guelph and talked about getting out of the big city and retiring in a couple of years to a smaller town or community. We were driving down my former street on Cranbrooke Avenue and as we approached Scott's house I started to get my things ready and took my hat off. He noticed my scar and of course asked me about it. I told him my story: the tumour, the cancer, but was taken aback by his reaction. This is a man I had never met before. We had spent approximately 22 minutes together talking in the taxi cab from Queen & Carlaw to Yonge & Lawrence. I could not believe the words that were now coming from his mouth:

"I cannot work today".

"I have to change my life".

I gave him $40 in cash but he tried to refuse it, handing it back to me. I insisted he take the money. I couldn't believe his reaction and had to remind myself that 30 minutes ago I did not even know this man. He told me that I had changed his life, but the thing that he didn't realize is that he also changed mine. We exchanged phone numbers and I called Kumar on the phone yesterday. It was as if we had always known each other. He was happy to hear from me and asked me how I was doing. I reiterated to him that if he is serious about moving to a small community and would like a tour of Guelph one day, that I will be his tour guide and show him around the area. Kumar is my friend and I look forward to seeing him again.

Exactly one month ago, on October 4, 2016, I developed a headache, sore eye, and it became the start of an unexpected journey, but today I feel that it's just the beginning and I accept whatever is to come my way.

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.