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 

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!

 

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:

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.