Chemotherapy: Round #2

We were at the cottage last weekend with the kids and I was playing the song “Country Down” by Beck on my acoustic guitar which happens to be one of my favourite songs of all time. I tried singing as well, but sadly singing has actually been one of my weaknesses and fears - something I’ve always been encouraged to do but reluctantly tried over the years since I really can’t sing very well. The kids were there playing in the background, and my daughter Anika told me in her encouraging way that it sounded “good”, and that this was a “good song for me, Daddy”. She went on to say that I should “not be afraid”, "practice it", “be confident”, and “get good advice”. I was surprised and amazed at the words coming out of this seven-year-old. I was proud. She inspired me to practice this song and play and sing it live one day - maybe even with my kids accompanying!? I’ve been practicing it every day since . . .

I’m in the process of starting to arrange the "Manhattan’s Music Event" (in Guelph), everybody welcome (kids too) - it will likely be sometime in February or March so stay tuned friends it is finally happening. I finally took the first step the other day - yes !!

I'm looking to book the whole place as a private party for the entire Sunday afternoon and early evening, likely a 2pm - 6pm time slot. We will have all the instruments there including drums, percussion, guitars, bass, ukuleles, violins, amps, mics, so you don't have to bring anything. I'll have multiple monitors and an overhead projector for chords and lyrics based on my newly finished eSongbook which contains more than 200 popular songs and classics. It's be an informal jam / karaoke /open mic kind of feel with anyone welcome to sign up and play. It will be like a holiday party "drop by when you can" thing. You don't have to stay for the entire afternoon, and if you want to play, you don't have to be a superstar and trust me everyone in the audience will be positive and encouraging. Our kids' band will play. They have great food there, awesome pizza! I might just play and sing the song “Country Down” that day and finally get over this singing fear with Anika as my primary inspiration (and possibly backup on keyboards!). It's going to be a great afternoon of good friends and music! Stay tuned for more information to come!

A few weeks back I was accepted into a new clinical trial with a prostate cancer specialist at the Juravinski Cancer Centre in Hamilton, Ontario, but unfortunately that same day once again received bad news - blood test results in which my PSA levels (cancer indicator) had again doubled. It continued to spiral up. As a result, it was recommended that I begin the second round of chemotherapy immediately as there was no time to wait until I got processed into this clinical trial. I’m still eligible to be part of it in the future, and in fact, it does look like I could get back into it after a few of my chemo sessions once my PSA is stabilized again. Yesterday for the first time in a few weeks I received the great news that it finally stayed stable, so that's the plan. For now, it’s more chemotherapy but this time with a different chemo drug (Cabazitaxel) which they hope will stabilize and slow this cancer down. I've also found out that my cancer is genetically linked to a specific gene and abnormality, which is good news and bad. It's good to know, but there is the slight possibility that my children will carry these as well, so the good part is that we will encourage early testing once they become 18 years old.

It's also been a bit overwhelming to hear of the many cancer stories from my relatives in Croatia particularly on my mother's side and specifically recently my cousins. My dear cousin Milica is currently going through a tough time as well with her own cancer fight and we are all thinking and praying for you dear Milica! Be strong my dearest cousin, you are one of the most amazing persons I know and a "rock" for your family particularly now after the tragic deaths in just the last few months of your dear brother Miljenko and mother. We are fighting this thing together, OK!?!

"Biti jaka draga Milica" . . .

I’ve been told countless times how “aggressive” my cancer is, so it’s been quite the challenge so far to say the least to keep it under control. My toughest opponent yet.

Yesterday I had just completed Session #2 of Chemotherapy: Round #2. It sounds like I’m referring to a heavyweight boxing match doesn’t it? Actually, in terms of sports analogies, I see this round more as the equivalent of the American football “Hail Mary pass” in which the quarterback goes for the long seemingly impossible throw into the end zone into a sea of opponent defensive coverage - a wall of impossibility - while praying for the best! Despite that, I have full confidence in my medical team and my "Spirit in the Sky", and I still have a lot of hope that somehow, some way, that seemingly impossible pass is going to get through and I’m going to be around for a few more years.

I have to be. I need to be.

So far things are going fine. I was told that the chemo treatment that I am currently on is more tolerable than the last one with lesser side effects (which so far is true), and also, my medical team have given me more support and medication such as additional meds for nausea, blood pressure, and injections for the five days after chemo which helps me with the low white blood cell count (which I had serious issues with during chemo Round #1). All in all, I feel better this time around except for a few days last week (where I couldn't even get out of bed) - so things are going well as can be expected so far. My biggest issue right now is mobility likely related to the steroid meds. I’m no longer in extreme pain (not gonna lie - the newest morphine-based pain meds are great and work like a charm!), but just having trouble walking and getting up stairs - going at about 1/3 speed these days. It’s a bit annoying but worse things can happen and I’m dealing with it as best I can.

I've had some great support from the Canadian Government CCAC/LHIN program and have a nurse, physiotherapist, and social worker visit us to help out on a regular basis - all free of charge and covered - yes our medical system has it's good points. I'm doing exercises every day based on my physiotherapist’s recommendations, and Kat and I are also looking into the possibility of starting either Yoga or Tai Chi. I'm told this would be a good thing for me to try.

I continue to work on several mostly private projects including the two books (a memoir mainly for the kids, and work of fiction), and a short 30-minute personal family video (mostly visuals - something that could be played at, say, . . . someone's memorial service?) that spans seven decades in six 5-minute segments going back to my parents’ childhood. I'm in the process of starting my own podcast, inspired by the doc film and related podcast "Sick Boy" (http://sickboypodcast.com/) and an event I recently attended here in Guelph called the “Death Cafe” (https://www.facebook.com/events/1707979059496301/) in which people are encouraged and welcome to discuss things which our society seem to shy away from.

I started a new website that will host the new podcast and the idea is to create a monthly podcast, have a new guest each month that is somehow connected with our theme, and release it together with my blog post to family and friends only. I'm doing this to further help me deal with my situation and possibly help others. I'm not interested in going viral with either the podcast or books, but rather, this is meant to be private to family and friends that I share my blog with. I'd appreciate keeping both the blog and website for podcast and books private - thanks!

There is an amazing calm that has recently come over me which is hard to explain. It's my “Spirit in the Sky”. It seems that each time I get bad news and possibly feel like I may be even closer to the end of my life, I become more calm and confident. It’s quite an amazing phenomenon and a very spiritual thing for me. It's real. I’m feeling really good these days and very positive. The song “Spirit in the Sky” by Norman Greenbaum from way back in 1969 (featured in the first "Guardians of the Galaxy" film) has become somewhat of an anthem for me these days. I love that song. Right now it's my inspiration.

It’s going to be a really special Christmas this year - I can feel it. We are all looking forward to seeing and spending time with our amazing family and friends just as we did this past Thanksgiving.

Wishing all my family and friends a great Christmas and holiday season and I know that we will be seeing many of you real soon.

Looking forward to 2018 with hope and optimism, and can’t wait to have all my friends together for the "Manhattan’s Music Event" in February or March 2018!!!! I will keep everyone posted on all the exact details once I finalize them shortly. 

Merry Christmas and Happy New Year to all my family and friends!!

Praying for dear Milica - be Strong!
One of the strongest and most amazing
women I know - it runs in the family!

 ----------------------------------------------------------------------

"When I die and they lay me to rest
Gonna go to the place that's the best
When I lay me down to die
Goin' up to the spirit in the sky"

"Spirit in the Sky"
Norman Greenbaum (1969)

The pros and cons of Plan B

One of my famous sayings is “always have a Plan B”. In fact, a little while back, my young daughter Anika quoted me and actually used the phrase.

A few years ago I entered a contest for a local documentary film festival which gave a prize to first-time filmmakers for a 10-minute short film. I created one about my fellow musicians that regularly play at this amazing weekly Sunday night open mic at the Supermarket Restaurant in Kensington Market, Toronto. I pocketed the $500 first prize for the documentary short contest, not bad!

During the individual participant interviews, one of the singers told me the story of how her father bought her a new condo a few years ago, but then she went on to sell it to finance her musical career. At the point that we met, she explained that the money was almost all spent on recording a professional CD and hiring top-notch musicians for performing local shows, so I was curious to ask her about what’s next. I asked her about her “Plan B” - just in case this music thing didn’t work out.

“There is no Plan B”, she confidently and defiantly replied. I was really surprised. I wanted to give her my opinion on it, but since I was the interviewer, decided not to bother. This was, after all, about her.

I suppose some people feel that if you are confident in trying to achieve a goal, if you admit that you have a “Plan B”, this might appear to diminish your efforts or even set you up for defeat or jinx it.

Last week I got more bad news. My PSA levels (the cancer indicator for prostate cancer) have spiked up now twice in a row. My back pain continues to get worse and in fact I’ve had pain shooting down the side of my thighs and down my leg to my feet. I’m getting a lot of numbness in my legs and feet. I fell down the other day crossing the street in Toronto, and my good buddy Brian literally picked me up off the ground in the middle of Yonge Street. I’ve had trouble walking over the past couple of weeks and my legs feel weak and like jelly (when Anika heard me mention this she came over and touched my leg) . As a result, my oncologist Dr. B has given me a new set of pain killers which work really well so the good news is that pain has been relieved for now.

I had another Bone Scan last week, and will get another Cat Scan done this Friday as they try to figure out what is going on and next steps.

Dr B has mentioned the possibility of more chemotherapy, but this time it could be even more intense and for a longer period of time. To be honest, I'm not sure I'm up for it. I need to do more research this time and try to nail them down on the expected benefits, and weigh that out against all the side effects. It appears at this point that the chemotherapy that I have just gone through and completed in August has not produced the desired results. They will be keeping a close eye on my PSA levels in the coming weeks.

I have an appointment next week in Hamilton at the Juravinski Cancer Centre for a consultation with a doctor performing a clinical trial that perhaps could help me. We will now will wait for all the results of my most recent scans and then hear the recommendations of my oncologists (Dr B in Guelph and Dr M at Grand River Regional Cancer Centre), as well as hope for perhaps participating in this new clinical trial in Hamilton.

Twelve months ago I was given eighteen months to live. This is reality, and based largely on the fact that this disease is extremely aggressive having made its way all the way up to behind my eye and along the way, spread extensively throughout my bones, spine and back. We were hoping that the ongoing hormone-based treatments along with the chemotherapy that I just completed this spring and summer would be able to hold off the cancer for longer. I was explicitly told that there is no cure for what I have. It is treatable but not curable. This is reality. As Dr M at the Grand River Regional Cancer Centre told me a few months ago, “the evidence is compelling”.

This is why I am currently working on my Plan B. I have to. I need to. It does not mean that I have given up hope. Anyone who knows me can vouch for that. I’m a fighter, not a quitter - but, I still need to work on my Plan B.

Plan B consists of speaking to my children about cancer, about my situation, admitting to them that right now things are not going well. They know that some people die of cancer. Some are lucky and live, but some die. Our good friends (same ages as both our kids) lost their father to brain cancer. They know that this can happen. It’s reality.

Plan B consists of planning things out at home, making sure everyone knows what to do in the areas that I was the expert, and of course managing and taking care of things financially for the future.

Having my Plan B is important, it’s essential. Working on my Plan B also allows me to really think about and appreciate the reality of my situation, which in turns has a positive effect. Having my Plan B does not equate to giving up or giving in. Each day that I think I may be closer to the end makes me appreciate that day even more. In some ways, it feels almost exponential. Every day, every minute, every breath, is a gift.

I happened to hear the song “The Drugs Don't Work” on the radio today by The Verve, from one of my favourite albums of all time “Urban Hymns” back in the late 1990's. A line in the song goes “Now the drugs don't work, they just make you worse”. As I’m about to turn in for the evening, I’m now listening to a great new band that I discovered over the past year called Folly and the Hunter, and one of my favourite songs called “Small Victories”. Here is a better line to leave with:

“How can I see what it all means to me
as I walk into the unknown?
All that I need are these Small Victories”

So many of you have prayed for me, thought about me, and told me me that without a doubt you know I will get better and beat this disease. I appreciate all your prayers, thoughts, kind words, and amazingly positive vibes that you are sending my way. I feel it every day. You’re all going to help me do this - one Small Victory at a time.

I have no doubt that after these past few weeks of bad news, that I am now due for some good news. Yes, it's going to happen, starting real soon. I will keep you all posted on my upcoming good news in the next few weeks!

In the meantime, enjoy LIFE my dear family and friends !!

Kat took this photo this morning at our local coffee shop, and sent it to me with the caption
"Breakfast with Ed". These are the drugs I need to take with food/breakfast.

 

A year like no other

A few weeks ago I happened to pass by a large mirror at the mall and caught a glimpse of myself as I walked by. For a brief instant, I actually didn’t recognize that reflection in the mirror. It appeared to be someone else - an older person, partially bald, grey, hunched over, moving very slowly and looking quite tired.

It’s been a year like no other. One year ago, on October 4, 2016, my eye became sore and by the end of the week, I was in surgery having a brain tumour removed. On October 23, 2016, my surgeon called us at home to inform us that it was in fact cancer. October 2016 is a month that I will never forget.

So much has happened in this last year, it’s quite overwhelming to think about. I’m not the same person I was both physically and emotionally. Physically, the cancer and drugs have done a number on my body. At one point I had lost 35 pounds and a full 3 inches of height. There are the physical side effects brought on by the hormone medications, as well as the back issues related to the spinal compression fracture.

My personality and emotions have also been deeply affected. Kathryn is likely the best witness to this, seeing this roller coaster ride day in and day out for more than a year now. I believe the drugs have had some sort of cumulative effect. I’m definitely not as easy going as I used to be, as was evident a few weeks back when I began screaming at a group of University students who were riding their bicycles on a busy sidewalk, with a bike lane only inches away on the road. This is something that I would usually just ignore and brush off.

I’m inspired by Michael J. Fox’s amazing book "Always Looking Up" about his battle with Parkinson’s disease, and one particular quote resonates:

“For everything this disease has taken, something of greater value has been given”.

I feel the same way today about my disease and what has happened to me. Yes there have been so many terrifying moments, shocking days, seemingly never-ending weeks of pain and discomfort, but amazingly, so much good has come out of this.

I wish I could describe to you how I feel at this particular moment. The pure joy of simply breathing and being alive is so exhilarating and euphoric, it’s something that I wish I was able to fully experience before I got sick. I wish it was something that everyone could experience every day regardless of your age or health situation. Also, the overwhelming sense of love and friendship that I've experienced through friends and family over the past year. These things are all positive "side effects" - gifts that must be fully appreciated.

This past weekend, we spent Thanksgiving with both sets of families: Kathryn’s family from Montreal came out to our cottage in Prince Edward County, and yesterday we were at my sister Sue’s house in Richmond Hill with her and husband entire Angelo’s family. Two huge family get-togethers and both were just amazing! We had so much fun this weekend, and it was the perfect way to give thanks for what we have, particularly since it was the one year anniversary of the “cancellation” of the 2016 Thanksgiving weekend as a result of my surgery.

Life is good!

My beautiful boy

Waiting for a miracle

Yesterday was an important day, it was the day that I met with my oncologist Dr. M at the Grand River Cancer Centre to go over my recent scans to determine what effect the chemotherapy sessions have had on my cancer, and also to discuss next steps. The recent scans were compared with the ones that were taken just after my diagnosis back in October and November of 2016 and analysed.

The good news is that the chemotherapy seemed to reduce my cancer somewhat and it appears that things are relatively stable right now. The bad news is that I did not receive the miracle I was hoping for, the one that Anita Moorjani (in her book "Dying to be Me") received when her cancer suddenly and unexpectedly went into remission, the one that Teresa Rhyne received (in her book "The Dog Lived and So Will I") when she beat her cancer, and the one that David Servan-Schreiber received (his book is "Anticancer"), a doctor and terminal cancer patient who beat the odds and has now been cancer free for almost 20 years. I think about all those lucky people who beat cancer and were featured in Kelly Turner’s book “Radical Remission”, and also those that did not, in the countless books and memoirs I have read over the past few months. I just re-read Gilda Radner’s memoir “It’s Always Something” and it made me sad.

In the meeting yesterday with my oncologist, we discussed the treatment options that are currently available, and those that might come into play once the current hormone treatments fail. We talked about a new drug that she may try, and also discussed what might happen over the next few months and years and what that may look like. Nothing I heard yesterday was a complete surprise, but I guess I was just hoping for that miracle.

The summer was good. We’re now into September and back to school and the regular routine. The kids are extremely excited to be back at school with their friends, and both are happy with their new teachers which is great. I’m still not feeling 100% although my last chemotherapy session was more than a month ago. Unfortunately my back pain has returned in what appears to be a re-occurrence of the spinal compression fracture issue that I had months ago. I’m back on the pain killers for now but hoping that this isn’t something that will persist as it did last time over many months. My hair is slowly growing back, and I’m especially looking forward to getting my nose hairs back so that I can stop this constant sniffling.

Up until last week, I was reading a most fascinating book called “The Emperor of all Maladies” by cancer physician and professor of medicine Siddhartha Mukherjee. It is essentially a “biography of cancer” (which is actually the book’s subtitle), a look at how cancer has been viewed, treated, and misunderstood over the years. At the same time, I also started reading “Being Mortal” by surgeon and author Atul Gawande whereby he confronts the realities of aging and dying in his patients and the limits of what he can do. Eleven months and dozens of cancer books and memoirs later, these seemed to be the perfect books for me to read at this time.

These books have changed the way I view cancer. They have also changed the way I view physicians and the way they interact with patients. In so many of the biographies and cancer memoirs I’ve read, the authors (patients) would list a myriad of complaints against physicians and hospital staff, beginning with objections to how the news that they have cancer was broken to them. I’m not saying that these complaints were not warranted, as I’m sure that many of them were, but I now look back at some of my own small complaints and feel that I think differently about them now.

How do you tell somebody that they have cancer? Is it possible to be completely compassionate and caring with each and every patient, every day, every year? As every individual is different, every doctor, cancer physician, and surgeon, is also different. This is what makes us human beings - unique individuals. Each has their own personality and special way of expressing themselves and dealing with issues. I don’t envy anyone that is assigned the task of breaking such news to a patient, and then communicating with them throughout their illness in such a way that they feel comfortable. Imagine how hard of a job a cancer physician or surgeon must have, each and every day full of life-changing decisions and high-stress situations. In addition to all of this, we expect them to play the role of psychologist and friend as well, which is a lot to ask. They are human, and I’m sure most do their best, but over the past few months my respect for them has continually increased. I feel lucky to have a great team of doctors/oncologists helping me through this, both at the Grand River Cancer Centre in Waterloo and here at Guelph General Hospital. I’m amazed at their professionalism and compassion.

As for the reading, I’ve had to put these most recent cancer books down for the moment as I feel I just need to take a break from it all. I think I might just take a break from a lot of things. Yesterday was a sobering reminder of my current reality. I feel sad and not particularly optimistic. I think about my kids all the time and the unfairness of the situation. I just may be all out of miracles. I’ve always tried to end my blog entries on a positive note, but today I’m not sure I can, and that’s just reality and the truth, so I think I’ll just leave it at that for now. Time to wipe my face dry, pick myself up off the floor again and get motivated.

Things will get better . . .

The end of chemotherapy

I've just completed my final of six chemotherapy treatments at Guelph General Hospital. Twelve months ago, in August of 2016, I developed severe chronic back pain which went on for several weeks. Ten months ago, I developed a sore left eye and days later, found myself waking up after surgery at Hamilton General Hospital to remove some "tissue". I left the hospital with a paper that showed "Brain Tumour" as the diagnosis - "what?!?!" - nobody mentioned that to me in the hospital, only the seemingly harmless words "tissue" and "likely benign" - not the words "Brain Tumour" nor "Cancer".

I've since gone through radiation treatments, hormonal therapy, and now finally the six chemotherapy sessions to treat what ended up being prostate cancer that travelled uninvited and unceremoniously up into my head while leaving and depositing more cancer inside my back and spine on the way.

Here is a photograph of the dozens of empty bottles totalling many hundreds of pills that have gone into my body in the ten months since October 2016, not to mention the bags of Docetaxel, the chemotherapy medication used to treat my cancer. As well, shown here are stacks of cancer-related books that I have read since this journey began. Oh yes, and on a positive note, that's my beautiful new guitar off to the right a Composite Acoustics "Acoustic Cargo" beauty! Music jam anyone?!

After chemotherapy number six, I'm just here resting at home and getting once again used to some of the uncomfortable side effects. The good news is that I've gone through this five previous times, so I'm a pro at this now.

It's been an interesting summer. Being on chemotherapy definitely slows you down. The hormonal medication that I continue to take, combined with the chemo really sucks the energy out of you so I continue to force myself to be active, walk every day, and just remain positive and hopeful. Spending time with my family is the best medicine for me right now. Kathryn has started her work leave of absence and is doing some great little projects at home, currently painting and re-arranging the kids' rooms. She is awesome!

In the first two weeks of July, we had an amazing annual summer family vacation. It's become our family tradition to spend Canada Day and the subsequent 2 weeks in a different part of our amazing county each year. In recent years, we've visited Toronto, Niagara Falls, Prince Edward Island, Alberta, British Columbia, and this year it was beautiful Nova Scotia.

This year was the annual vacation that almost never was . . .

I was very sick the day we were to fly to Halifax. The team at the Cancer Centre at Guelph General Hospital took me in the morning of our flight very quickly knowing time was of the essence. Our airport taxi was to arrive to pick us up at 2:30 pm so the team quickly got to work. They took my blood work and vitals, started pumping me full of fluids/antibiotics simultaneously to make it go quicker, and did everything in their power to get me out of there in time to get on that flight. They were very concerned. Dr. B, my incredible oncologist, was very worried and I know that she had hoped that I would go to my "Plan B", which was to let my family leave on that day and join them a few days later once I was feeling better. I was stubborn and determined to go and take my chances. My white blood cell count was low, I was very sick. In the end, Dr. B and her amazing and caring team saved our vacation - and I can't thank them enough. She even called me on my personal cell phone after I arrived in Halifax to see how I was doing. Truly remarkable woman, I love her! Again I ask, how lucky am I?

The first few days in Halifax were rough until I started feeling a bit better, but once we got to Peggy's Cove things were fine. We had an amazing time travelling through the amazing province of Nova Scotia, on to Lunenburg, Tatamagouche, and then gorgeous Cape Breton Island where we managed to hike a couple of breathtaking walking trails - spectacular! Here is a photograph of our family at the end of the Skyline Trail in the Cape Breton Highlands, one of their most popular and challenging hiking trails.

The month of July was rough. We lost our aunt and her son in separate tragic events in Croatia only 2 weeks apart. I considered my aunt like a second mother, and my cousin Miljenko like a true brother - one of the kindest and most amazing persons I have ever met in my life. I will never forget our visits to Croatia as kids and the joy we experienced with this family. Miljenko died at the age of 57 leaving behind his wife and five children. I can't stop thinking about those kids. I will never forget my aunt and cousin, they were incredible human beings. My own mother has had her own cancer scare, and last week had major surgery and is currently resting in hospital. Thankfully, the doctors are saying it was a success with excellent prognosis. My mom is an extremely tough 88-year old, she is a rock, one of the strongest women I know! We are all thinking of her and wishing her a speedy recovery. Life is so unpredictable.

So, what's next? Over the next few weeks I hope to recover from the core side effects of the chemo, and am expecting to feel better as the summer winds down. We are very much looking forward to our annual stay at the cottage for the last two weeks of August, and then back to school for the kids.

In terms of analysis and treatment, I have some appointments coming up for new CT and Bone scans, and the doctors will then compare them to the originals that were taken last fall. Once everything is analysed, my oncologist will determine the next steps. As mentioned before, the hormonal treatments only usually work for a limited time (like 2 or 3 years), and at that point a "Plan B" is put in place, whatever that may be.

It's the first week of August. Today is a great day. I feel happy and loved. I'm glad to be alive. I love my family, I cherish my friends. Life is great! I hope all of my great friends and family out there are enjoying this summer, and once I am feeling a bit better, look forward to seeing more of you real soon!!!

The cancer book club

I just finished reading the book “The End of Life Book Club” by Will Schwalbe. In it, he describes his mother's cancer journey. Both he and his mother are avid readers so because they are spending so much time together through appointments and chemotherapy sessions, they begin to recommend books to each other and start to refer to it as their own little book club. I found some great recommendations throughout this book.

I've mentioned before of some of the positive aspects that come out of a cancer diagnosis and related “not-so-great” prognosis. Number one is appreciating and enjoying each and every moment of every day. I've embraced the concept of mindfulness which is all about living in this very moment, right here, right now. I wish I had discovered this sooner in life!

I've learned the importance of reducing stress and taking the time to think about all the beautiful things in life. I wake up every day thankful to be alive and appreciative of the fact that I've had such a great life and been blessed with a great family. I'm one lucky man.

Early on after I was diagnosed late last year I started to get back into music and playing my guitar. We've set up a new, separate jam/rehearsal room in the basement primarily for the kids and now have all the instruments in one place. The kids now do their band rehearsal there with their very first public performance this Saturday through their Jam School. Unfortunately for myself, I have not been playing as much as I'd like to but recently have slowly begun to get back into it. Just got another new guitar (yes I needed “another” new guitar - and for my musician friends, it's a beautiful "Acoustic Cargo" composite). I'm still planning to arrange that music night after I've completed my chemo since my state lately has been generally unpredictable.

One of the great things that I've been doing lately since my diagnosis has been getting back into reading. Serious reading. When I was young I became an avid reader and I remember even bringing books to school and reading at recess and lunch hour in between ball hockey games. I went through a period in my late 20s and early 30s (when I was single and had more time on my hands) in which I became obsessed with classic books and read every day. For many years, each morning and evening you would see my face buried in a book on the GO train to work from Richmond Hill to Toronto. In recent years I have not been reading very much unless you count technical books and magazines (which actually doesn't count).

It's been such a great thing for me to really get back into reading books particularly this year. I'm also happy that Shayne and Anika have embraced reading as well. Kathryn is also an avid reader. Her mother read to her every night when she was young, and she now does the same with her own children. No matter how busy Kathryn is, regardless of how early she woke up that morning, how little sleep she's had, how busy and stressed she is at work, she always finds the time to read to the kids before they go to bed. It's like their own little private ritual. Shayne is now reading books on his own and working his way through book series’ that he finds interesting. Anika is also getting better at reading but at this time still prefers Mom (and sometimes Dad) to read to her before bed.

These days, I seem to be switching in between non-fiction books on serious topics like cancer, healing, medical-health-related, general inspirational, and fiction. I'm really finding it inspiring to read about the stories of ordinary people who have gone through a life changing journey and took the time to write about it and share their stories. Its really nice to read about the things they've gone through and suggestions they have as I can usually relate very much to their personal experiences.

I've now read more than 15 books in the last 2 months and many have really inspired me and helped me with acceptance and putting things into perspective. I know that I have a great many friends out there who have either gone through cancer or other serious illness, or have been through it with a family member or close friend as caregiver. I also have a lot of amazing writer friends out there, so for all of you, here are some of my book recommendations in case you are interested:

Cancer / medical-health-related / inspirational:

“When Breath Becomes Air” by Paul Kalanithi - perhaps the one that I can relate to the most, this is an incredibly well-written book by a very young neurosurgeon who was diagnosed with terminal cancer in his 30s. Thanks to my sister Sue for this exceptional recommendation! (she insisted last weekend I drop my other books immediately and read this one - I complied as any good brother would and read it in a single day!).

"Anticancer" by Dr. David Servan-Schreiber - similar story to "When Breath Becomes Air" - about a young doctor that is diagnosed with terminal cancer in his 30s and his own story. He actually beats it and talks a lot about what he did to supplement the conventional medical treatments. He is now 15+ years cancer-free. Great book and really well-written!

"Radical Remission" by Kelly Turner - she studies those whose cancer has gone into remission and summarizes what they have done - nine chapters, one chapter for each item (ie: first one is "Radically Changing your Diet") - gives you hope. I loved this book!

"Malignant Metaphor" by Alanna Mitchell - author's brother-in-law is diagnosed with cancer and she helps him do research and writes this book about what she learns. 

"Zen Cancer Wisdom" by Daju Suzanne Friedman - great, positive advice for those living with cancer and/or their caregivers.

"You Can Conquer Cancer" by Ian Gawler - older book but still relevant - also about a doctor who went through cancer and recovered, emphasizes the power of the mind, family, and social support.

"You Can Fight for your Life" by Lawrence LeShan - author is a doctor that spent 20+ years doing research about how the mind and emotions has an effect on cancer - this got me into "Mindfulness" - read a couple of books about it and now do it every day - it's helped me a lot.

"The Rough Guide to Mindfulness" by Albert Tobler and Susann Herrmann - good introduction to the concept of mindfulness and living in the moment - has had a really positive effect on me and motivated me to get back into Yoga and light exercise as well (although I admit I NEED to do these things more consistently!).

"The End of your Life Book Club" by Will Schwalbe - about a book publisher whose mother is diagnosed with cancer - he ends up spending lots of time with her, talking and recommending various books - found some great book recommendations to add to my book list while reading this one.

"Learning to Say Good-bye - When a parent dies" by Eda LeShan - writes about the questions that children have when a parent dies. Unbelievably, the author's mother died when she was only 5 years old and she was never properly told about what happened, only that mother had "gone away". This had an extremely negative effect on her life. She only found out the truth when she was much older. She wrote the book to help people properly tell children the truth in a practical and compassionate way. Need to consider this as our Plan "B". (I once interviewed a female indie musician for a short documentary film I was working on and asked her what her Plan "B" was should she not make it in music. She looked me in the eye and confidently said "There is no Plan B - I WILL make it in music". She is currently in her mid 40s and still trying. Not having a Plan "B" - bad idea . . .)

"The Reason you Walk" by Wab Kinew - story about a traditional indigenous chief who is diagnosed with cancer, written by his son who reconnects with him throughout his illness and eventual passing.

"On Living" by Kerry Egan - writes stories about her patients in hospice and the different ways that people face death.

“Ghost Rider” by Neil Peart - this is more in the category of “inspirational”, I read this book back in the late 90s when it first came out and recently re-read it once again. Neil Peart is the drummer and lyricist for the band “Rush” (a band I’ve always loved starting back in high school). He tragically lost both his only daughter and wife in the span of a year and was left alone and broken, and decided to embark on a courageous healing journey on his motorcycle all across North America. A well-written and very inspiring book. 

“The Perfect Vehicle - What is it about Motorcycles” - after watching the film “The Bucket List”, about two terminally ill men who decide to skip treatment and travel the world to check off their bucket list items (meaning I suppose, things to do before they “kick the bucket”), I began to think about what I would do if I did not have my family - perhaps something like travel the world (as the guys in “The Bucket List” film  did), or take off through Canada and United States on a motorcycle (as Neil Peart did as described in his book “Ghost Rider”). I’ve always had this fascination with motorcycles. Perhaps I’ll write my own fictional book about a journey of healing on a motorcycle to satisfy my fantasy.

Fiction:

“The Death of Ivan Ilyich” by Leo Tolstoy - mentioned in the book "Anticancer" by Dr. David Servan-Schreiber, an interesting examination of facing your mortality, death, and the possibilities of redemption.

“Zen and the Art of Motorcycle Maintenance” by Robert M. Pirsig - an examination of how we live - growth, discovery, and acceptance, a modern day classic, and another great motorcycle trip story.

“The Alchemist” by Paulo Coelo - great recommendation from Kathryn from her vast book library (which I once again need to revisit), a compelling story with many great life lessons weaved into it.

Up next on my book list:

“The Last Lecture” by Randy Pausch, “Picture your life after Cancer” by the New York Times, “Dying to be Me” by Anita Moorjani, “A Year to Live” by Stephen Levine, “The Etiquette of Illness” by Susan Halpern

Fiction: “Crossing to Safety” by Wallace Stegner and “The Kite Runner” by Khaled Hosseini

If anyone out there is interested in an informal, virtual “Book Club” please let me know. Send me your book recommendations and I’ll put them on my book “Bucket List” and if I read any new good ones I'll send them your way.

Today I had my 4th chemotherapy treatment (of 6 in total) and so far all is well. I’m a bit nervous after the last one, in which I was quite sick for about a week thereafter, but it looks like we've determined that the real culprit was likely a virus so I’m hoping that this time will be better. 

The entire family is looking forward to our upcoming vacation in Nova Scotia in July. It's going to be awesome!

Once again, and I can’t say it enough, thanks to everyone for all of your kind words, dinners (on occasion brought directly to my home!), lunch invitations, visits, and overall friendship and concern. Even though she is also going through a lot these days herself, my dear sister Sue is always inquiring on how I'm doing without fail. She is amazing - it means a lot to me.

The love of reading

Chemo sucks

I haven't had the strength nor desire to write over the past couple of weeks simply because it's been a bit of a rough ride. After my 3rd chemo session on June 1st I had probably one of the worst weeks since this all began. I was feeling sick, not able to eat, and on Monday June 5 (Shayne's 9th birthday) I ended up in the hospital to be pumped full of liquids for hours on end.

Yes, chemo sucks - sorry for the crude description, but it's really the only thing I can think of at this time!

Most people know that euphoric feeling that you have after you've been through a terrible illness or flu for days on end, and then it's finally over and you feel better and you can eat normally once again. That's how I feel today. I can actually eat. My legs don't feel like I have 25 lb weights attached to them.

A couple of days ago my good friends Marian and Rob came over and cooked dinner for me and we spent a few awesome hours getting caught up and talking. It was great!! Once again, I'm overwhelmed by the people in my life, what can I say? I sometimes wonder what I've done to deserve it to be honest.

Overall, I'm very happy. I'm halfway through my chemo sessions (3 of 6), and looking forward to our summer vacation in Nova Scotia in July. I just have to make sure that I'm not going to be sick while we're out there. It's hard to predict, the reaction I've had after each chemo session so far has been different. In fact, the terrible week I had after the 3rd could also be contributed to a virus that just happened to hit me 100 times harder than someone not on chemo.

Today, I'm feeling great! Life is good once again. It's great that the weather is finally improved and we have lots of warmth and sunshine. The other day I did a 14 km bike ride and it was fantastic.

Looking forward to an amazing summer. Thanks so much to everyone I love hearing from you and I just want you all to know that all is well. I'm inspired every day, especially by my family.

Anika and Shayne, my inspiration - performing at their school talent show in June 2017

Chemotherapy begins

If there is anything positive that comes out of a cancer diagnosis or terminal illness, it’s the fact that you truly enjoy and appreciate every moment of every hour of every day.

For myself, there are many days where it’s initially difficult to get going and motivated again with the weight and fatigue that comes not only with the hormone-based treatment that I'm currently on, but now the chemotherapy treatments and related side effects and psychological effects and tricks it plays on you.

Once I get going, though, I’ve been able to keep busy, keep moving, and usually feel pretty good by the end of each day. Sometimes it's a slow and gradual transition and I need to work for it.

I've been working, walking or cycling every day, eating well, and doing regular meditation and prayer. I'm learning how to embrace the concept of mindfulness (living in the moment) and believe that all of these things combined are helping me, making me feel good and have strength, and contributing to keep my spirits way up high!

I've been truly uplifted by about a dozen books that I've read (or re-read) in the last four weeks, mostly inspiring ones written by cancer survivors and/or researchers. I've returned to some of my most memorable classics authors like Leo Tolstoy and Fyodor Dostoevsky, and also re-read a couple of my old inspirational favourites such as “Tuesdays with Morrie” by Mitch Albom and “Always Looking Up” by Michael J. Fox.

Inspired, I've decided to write my own book about my life and cancer struggle specifically written for my children, with the intention that they would read it as adults and hopefully gain an understanding of who their father was and how much I love them. Each chapter begins with “Dear Shayne and Anika”. I’ve really enjoyed writing it so far and plan to get it self-published in both physical print and eReader format. It's a great little project for me to work on at this time and has really helped me appreciate my life, shine a light on just how lucky I've been, and helped me to maintain a positive attitude throughout this challenge.

A special thanks to Val Tobin, a friend and accomplished writer, who is helping me navigate and understand the world of self-publishing and best practices!!

This past Thursday, May 11, 2017, I completed my second round of chemotherapy at Guelph General Hospital. There will be 6 sessions altogether each 3 weeks apart, and if all goes well, I should be done the chemo in August and at that point expect to continue with the monthly hormone-based treatment for as long as that continues to work and keep my cancer under control (as it has successfully done so far). My PSA (a measure of the level of prostate cancer via blood test) is still at a respectable 3.0 and generally within the normal range.

So far, most of the side effects of my chemo treatments have to do with fatigue and loss of appetite, but I'm trying my best to counter that with exercise (walking and cycling) and healthy eating. I'm gradually losing more hair but didn't really have much to begin with, so that's the least of my worries at this time!

I've lost about 25 pounds since last summer, and even more surprisingly, 3 inches of height! The height reduction has to do with the deterioration of my bones and spine as a result of the cancer, drugs, and spinal compression fracture which essentially started last summer. I hope to gain some weight back eventually but have no idea if I'll ever regain my height unless I can discover some sort of miraculous new stretching machine. If anyone out there is aware of anything like this please let me know!

Overall, I feel really good and am enjoying a lot of quality time with Kathryn and the kids. I have no idea what I would do if I didn't have them in my life.

Kathryn and I had a great week at the HotDocs documentary film festival in Toronto a couple of weeks ago, an annual thing for us, and saw several amazing and inspiring documentary films. It was great fun going from film to film and visiting our favourite restaurants and coffee shops in Toronto and having lots of great conversation in between.

My family and friends inspire me and keep me going and motivated each and every day.

Life is good - spring is here - enjoy every day my friends!

Where would I be without these guys ?

From anger to hope

Last week my friend Laura wrote to me with her usual kind words of encouragement and said “I'm not sure I wouldn't be just plain angry if I were in your shoes”. It was quite the coincidence because I feel like I have now finally reached the “angry” stage in a big way, perhaps some sort of delayed reaction which I can’t explain. Now, by some miracle, anger has amazingly turned into hope.

I must say that I'm finding the whole cancer thing to be quite . . . interesting. Does that sound like an odd thing to say? I’ve been totally immersed in reading positive stories about stage 4 cancer survivors and alternative cancer therapies that have helped many people. Of course, you need to be careful because of all the false information out there, particularly on the internet, but I’ve recently been inspired by a good many authors, doctors, and cancer survivors which I feel are credible. The amount of information available to us today can sometimes be overwhelming and conflicting, and it’s a real challenge to filter out the good and the bad and know what's right and what makes sense for you.

I'm doing my best to stay positive and try to counter the effects off my current meds by walking and/or cycling every day, drinking lots of water, and changing my diet and eating healthier - thanks in large part to my in-house dietary consultant, Kathryn. I’ve been tracking all my daily ToDo list items with a handy “Habits” app on my smart phone. Things had been going very well and I’ve been feeling good, but then . . .

Last week I got a bit of a surprise. My urologist who has been treating my cancer over the past few months with a hormone-based treatment recommended I see an oncologist at the Grand River Cancer Centre. Kat and I had initially understood that the reason for this visit was just to have an oncologist lined up and connected with when the time comes. We already knew that the current treatment only works for a limited time (ie: 1 to 3 years) and once it stops working, Plan B (likely chemo) would be put in place.

I was shocked to hear the oncologist recommend that I start chemotherapy right away. She based it on a study that was recently conducted in which doing “up front” chemo at this early stage of hormone-based treatment showed that patients lived on average of about 14 months longer.

I didn't really have a lot of time to think or research it, and the oncologist was very adamant that we get things started and told me I could change my mind if I chose to. When I left the Grand River Cancer Centre, I found a parking ticket on my dash for parking in the wrong spot. I got into the car and screamed so loud and for so long that any potential witnesses would surely think I was a crazy person. It was hard on my throat - painful! I don’t think I’ve ever screamed and yelled like that before, and it had very little to do with the parking ticket (or perhaps that just put me over the edge). I had officially arrived at the “angry” stage. You see Laura, I’m just like you, perhaps just a bit slow . . .

Kat and I have been doing research and speaking with people and decided to go ahead with the chemo. I was told it was a type of chemo that did not have as bad side effects as some of the others, and would be administered in addition to my current hormone-based cancer treatment (as with the research study group). I'm scheduled to begin my chemotherapy next Thursday, April 20.

Over the past month or so, there have been so many amazing authors and cancer survivors who have given me something extremely valuable at this time: hope. Sad to day, and this is not necessarily a criticism, but after meetings with doctors and oncologists, I am all too often left with very little hope (ie: what I have is not curable). I’m reading about things that can be done safely (ie: eating healthier) in parallel to the traditional drug-based treatments, and feel that some of these make sense and are at least worth looking into and giving a chance.

The most important thing right now is that “I believe”. I believe that I can get better and win this fight. I HAVE TO get better for the sake of my family. My kids are too young, and I’m not ready to just give in and accept a death sentence as was delivered to me in early December of last year. For many months I have been thinking about life purpose and what I should be doing and it has suddenly become quite apparent to me that I need to spend every waking hour taking care of myself, being healthy, learning, doing research, speaking with people, and working and dedicating myself to anything and everything that I believe might help me to get better. This, combined with spending lots of time with my family, is what I need to do.

OK - I realize that there is a chance that I am wrong and the opinion of the doctors and overall statistics are right, and I will not win this fight. In his book “Anticancer”, Dr. David Servan-Shreiber (M.D., Ph.D) talks about his own battle with cancer and how he applied non-traditional and complementary approaches to its approaches and treatment. He is now in his 15th year cancer free, and although he believes in and writes about the many alternative approaches that he feels helped him conquer his terminal cancer, he also admittedly writes:

“I’ve lost some friends since this book was first published. Some of them were people who applied its principles in their own lives. Unfortunately, the methods and principles outlined here do not guarantee success against cancer”.

I was playing hockey with my daughter Anika here at the cottage yesterday and we were working on passes to the front of the net (one-timers), and shooting as if you “know” that you will hit that puck and put it in the net - in other words, swing at the pass with the confidence that you WILL succeed. This attitude helped me score a few goals in my time (as a few of my hockey buddies might attest to), and I believe this concept to be the same in a cancer battle.

I appreciate very much all of your thoughts and prayers. You must believe otherwise you simply will not win. If you believe, then you will at the very least give yourself a better chance to win. All I'm asking for is a chance . . .

I believe.

Reading in the car can be a challenge.
(Kat's been doing most of the driving lately)

 

Back on track

This is my 4th month on the hormone-based cancer treatment Firmagon, and so far, so good. My PSA level has been steady around 1.0 for the 3rd straight month, which is good news for me.

March has been a great month so far. Our March break holiday week with the kids and great friends at the cottage in Prince Edward County was fantastic. How lucky we are to have such awesome friends! I'm enjoying every minute that I spend with family and friends, and I've learned how to counter some of the negative side effects of the many drugs that I'm currently on. For example, one of the problems I've had is the fact that I always wake up in the morning sad and depressed. It's difficult to wake up in the morning and get going and feel motivated. Mind you, once I get going it's fine but it's a matter of getting myself to that point that is the hard part. So, to counter this, I am starting to force myself to wake up and get outside right away first thing for a walk (and soon, hopefully bike ride as well) and so far it's worked.

Because of my recent mood swings, I saw a social worker at the Grand River Regional Cancer Centre who referred me to a psychiatrist. I was prescribed an anti-depressant, but based on my own research, side effects, and some recent conversations I've had, I'm holding off taking yet another drug and will try to get my spirits up in a more natural way. I'm seeing the psychiatrist again in two weeks and will discuss all of this further.

My back pain has been much better recently, but not sure if this is a result of new pain meds or the fact that the spinal compression fracture is actually slowly healing on it's own. It's been quite amazing to be rid of that extreme pain that was persistent for many months! I feel good!

I love spring, it's my favourite time of year. I'm looking forward to working on my backyard lawn once again, my annual thing. The big trees and lack of sunlight out back makes it quite the challenge! Each year I've been over-seeding but I may just break down this year and try sod.  I miss my good friend and next door neighbor Mel who passed away after his own cancer battle a couple of years ago. Mel used to regularly lean over the fence and jokingly give me a hard time about how much time I spend on that darn lawn!

Kathryn has decided to take a 6 month leave of absence from work starting in July which is great news. It will be nice to spend more time together and I know that she deserves this break from work as she's been going full throttle for many years now. Time to relax, chill out, and enjoy time with family and friends.

Every day I think about how lucky I am. I'm overwhelmed when I look around at the amazing friends and family I have who have been so good to me particularly since my diagnosis back in October. I'm doing my best to remain positive and fight rather than lie down, sometimes easier said than done. Recently I've immersed myself in watching and reading countless inspirational stories of Stage 4 cancer survivors who refused to give in. This is one that I particularly enjoyed by a new inspiration of mine, Stage 4 cancer survivor Beverlye Hyman Fead: https://www.youtube.com/watch?v=1HArX5_oL0g
 
I've been thinking about a return visit to Lesotho, Africa this September. Currently there is a group going through Bracelet of Hope in the first two weeks of September. If my cancer treatments continue to go well this spring and summer, and if my back pain continues to improve, then I will seriously consider going back. My previous trip there back in October 2014 was an incredibly rewarding experience.

So, many things to be happy and positive about. Thanks again to all my family and friends for your unbelievable support! Every day is a gift.

Spring is here !!!!

Leaving you with a quote from 4th Stage Cancer Survivor, artist, author, documentary filmmaker and my new inspiration, Beverlye Hyman Fead:

“When you are diagnosed, that's not the time to lie down, that's the time to stand up and fight”

from her video “Stage IV: Living with Cancer” https://www.youtube.com/watch?v=1HArX5_oL0g

 Fun at Sandbanks Provincial Park - March break 2017

The aftermath

We are now into a regular monthly routine with my cancer treatments. Near the end of each month, I go for blood tests whereby the primary goal is to evaluate my PSA level, followed a few days later by an appointment with my Urologist to go over the blood test results. If the results are OK, I continue with my monthly Firmagon injections into my stomach (which hurts like hell for the first week and beyond!). My PSA was 1,060 back in November, but went down to 41.1 in December, 1.0 in January, and now, down to 0.95 in February. It needs to be 1.0 or lower so this is great news. As I mentioned before, this treatment is not a long-term solution, so the hope is to have it work for as long as possible before "Plan B" is put into action - but so far, so good. Also my back pain has been much better lately as I've been put on a different pain medication.

I feel like the month of February represents the aftermath of a hurricane - when the smoke and dust settles and you see clearly the result of the devastation.

Ever since this ordeal began in October, things happened quickly and we were busy with appointments, the holidays, visits, our trip to Europe - and believe it or not there didn't seem to be a lot of time to really sit back and reflect. In the month of February, I kept a relatively low profile, getting back into work as best I could, but also made lots of time to myself to think and evaluate the "aftermath".

Remember back in my very first blog, I wrote about how I refuse to ask “why me?” - refuse to feel sorry for myself - refuse to ask “why this again?” - well, lately I’ve been doing a lot of “asking” and feeling sorry for myself. Not sure if it’s the weather, lack of sunlight, or perhaps some kind of inevitable delayed reaction. I imagine that a lot of this has to do with the drugs. The Dexamethasone I was on back then gave me bouts of euphoria (sometimes followed closely by bouts of depression), and it seems that my current box of drugs does not seem to have as much of a positive effect, but more of a "downer".

One of the things that makes this tough is the fact that I can’t do everything that I was able to do before. I can’t drive. I can’t run my kids’ hockey team practice (can’t even get on skates). I can’t lift things, can’t do basic things around the house that I used to do. It makes you feel rather useless most of the time which is not a good feeling.

I feel this overwhelming desire to do "something". Back in October of 2014 I went to Lesotho, Africa with an amazing group of people through the organization Bracelet of Hope, and found it to be an extremely rewarding experience. I'm in the process of speaking to a few people to see if a return trip to Lesotho is feasible and worthwhile. I've already put the bug in Kathryn's ear . . .

I've been thinking a lot lately about what to say to my kids. Right now, they know daddy has been sick and is now recovering, but in case things start to go the other way, I feel the need to be prepared on how to explain things to them in the best possible way. This is the main thing that's been on my mind lately, and something that's been bothering me quite a bit. I saw a therapist a couple of weeks ago that was available through the Grand River Cancer Centre, and this was the first step in learning and figuring a few of these things out.

In the meantime, I'm looking forward to some sunshine in March, the March break vacation with Kat and the kids, and hopefully being able to do more such as taking the kids to school and activities.

February was good, March is going to be even better!

The new normal

I’ve been getting some comments and complaints from friends and family that they haven’t heard from me in a while and that I haven’t been posting updates to my blog as frequently as before. Yes, that’s true and I apologize. I tend to write more when I’m feeling good and drop off a bit when I’m not feeling so good. The last few weeks have been hard but I’m optimistic that things are going well so far and will slowly get better.

I received more blood results last week and my PSA is down to 1 so this is good news. In fact it couldn't be better. That means that the hormone-based cancer treatment that Dr. M has me on is working. I’ve gone from PSA 1,060 in November to 41 in December, and now down to 1. Although this is great news, keep in mind that this particular treatment is not a cure, and usually only works for between 2 and 4 years on average. Eventually, the cancer will “outsmart” it and we will then have to go to another treatment, such as chemotherapy or other.

I’ve been told there is no cure for what I have, particularly since it has spread (metastasis) and gone into my bones and spine, so the best they can do is to come up with ways of prolonging my life as much as possible. There are new discoveries and treatments coming out every day, and I’ve looked into a great many alternatives as suggested by friends and family so it’s a matter of keeping at it.

I received some really nice news last week. I met with Kathleen Buckley, a Genetics specialist at the Grand River Cancer Centre. She went through my family medical history with me, and then was able to connect me with a group in Toronto at Sunnybrook Hospital that are doing a cancer research study. She thought that my situation might be perfect for what they are currently working on, so I was able to meet with them last week at Sunnybrook to get things started. I’m so grateful to Kathleen - there always seems to be someone out there looking out for me.

The world of genetics is a really fascinating area and must be a very interesting field to work in. Over the next few weeks, the team at Sunnybrook will be performing some tests on me to see if I have a specific genetic mutation and if so, I may be eligible to try these new drugs they are working with which they’ve had success with so far. It’s all new and experimental, but I’m very happy to have been included in this because it can’t hurt and at this point anything new is always worth a try!

I’ve slowly been getting accustomed to my “new normal”. The back pain is still there although over the past 5 days it seems to be slowly getting better. I’m hopeful that this will continue and that I will not require surgery for my spinal compression fracture. I’m also trying to get used to the fatigue that comes with the cancer medication, and this one is also tough to deal with. Sometimes I have to force myself to wake up otherwise I could sleep all day. I need to kick myself in the butt - accept it, get used to it, and deal with it! I’m getting frequent “hot flashes”, a side effect of the cancer medication, which my Urologist compares to what women go through during menopause, and have been given yet another drug to deal with it. These things combined have brought me down a bit over the past few weeks but as I mentioned before I am optimistic that the month of February will be better!

Last Saturday, my 6-year old daughter Anika performed at Van Gogh’s Ear, a local restaurant/pub here in Guelph through her music school, Jam School. When her teacher Mikaela first mentioned it I wasn’t too sure she was ready. She has been playing piano for a couple of years, but only started the voice lessons with Mikaela at Jam School a couple of months ago. She really believed in her and was confident that she could do it. Mikaela is awesome!!

Anika performed the song “Feel the Light” by Jennifer Lopez (from the movie “Home”), playing the piano and singing (solo). When she was finished, I became very emotional, not just because she played well, but just the fact that she had the courage at age 6 to get up there and perform with such confidence in front of such a large group of people, and even work through a couple of minor errors just like she was taught to do (just keep going!).

Kathryn and both kids have really inspired me and despite the odds, despite the discomfort, I am ready to work through and just keep on going just like Anika did last Saturday afternoon on the Van Gogh stage!

I’m hoping to get out more in the month of February and am currently working on arranging that music night I promised a few weeks back - so stay tuned. Once again, thanks to all my family and friends for all your amazing support. I’m still enjoying that cooler full of frozen food and restaurant gift certificates that my good friends at Manulife gave to me a few weeks ago, and as always, appreciate everyone’s kindness and concern.

Here’s to an amazing month of February!!!

My inspiration: Anika performing at Van Gogh’s Ear in Guelph on Saturday, January 28

 

A new year

We've just returned from our Europe vacation and it was everything we hoped it would be and more. After spending Christmas with both families first in Richmond Hill then Montreal, we boarded our plane for Europe during a crazy Quebec storm 3 hours late and barely made our connection flight through London! It was quite the adventure running through Heathrow airport with the kids with collective hearts pounding. Amazingly, we got on our connection flight to Zagreb, Croatia with mere minutes to spare - and even more incredible, our luggage arrived as well!

Our first stop was Cakovec, Croatia and the kids were amazed at how many "cousins" there were to meet. At each visit the kids didn't want to leave (a sure sign they were having a good time), it was great fun and we were welcomed and treated like royalty. Thanks so much to everyone for making our visit so memorable. I'm proud of my family in Croatia and you were all amazing especially Pero and Zeljka for co-ordinating all our visits with relatives and making our trip perfect! Kathryn was also great with booking and arranging everything.

Next was Zurich, Switzerland, a city I've been to many times and always loved. We spent New Years Eve and a relaxing 4 days there. Zurich is a beautiful, clean city and it was nice spending some time there.

Finally, we arrived in Paris and Anika was able to fulfill her dream of seeing the Eiffel Tower and she was not to be disappointed. We had a fantastic lunch in the Eiffel Tower restaurant something we will always remember. It was a lot of fun exploring Paris with the kids and showing them how fun and interesting it can be to explore a new country and city. We got a tour of the Louvre and explored Montmartre and Sacré Coeur Basilica.

It was nice to see our kids enjoy and appreciate the same things that we do such as the great food of Paris. Every restaurant, pastry shop, and coffee shop was fantastic!

Although we did have a great time and enjoyed it very much, it was a challenge for me at times. The current cancer medications that I am on make me very drowsy and being off the Dexamethasone has been a factor. The back pain is unbearable at times as I'm sometimes unable to walk because of my spinal compression fracture, but hopefully this will soon be rectified or at least alleviated upon my return.

Before I left I received good news as my PSA levels are down from over 1,000 to 40 which means the cancer medications are working so far. The bad news is that if the back pain persists then I will require surgery.

It was an emotional roller coaster ride with fatigue, depression and pain mixed in with a truly memorable experience with my family. It was great to see our kids enjoy travel as much as Kathryn and I do. It was fun doing simple things like spending time together talking, learning, taking photographs, and laughing.

As the saying goes "nothing worthwhile is easy". As hard as it was at times physically for me, it was an experience we will never forget so well worth it.

In terms of cancer treatment, the plan is to continue on the current path using hormone-based drugs and injections and monitor the results. Prostate cancer cells feed on testosterone so that is the current plan, and there is no telling how long this can be effective so we need to just re-evaluate and adjust the strategy as we go. 

Despite the persistent fatigue and chronic back pain, I am still optimistic and am enjoying each day as it comes. It's amazing how small things can bring you joy: watching your kids get excited about exploring a new city, seeing them using the french they've learned in school by ordering in a Parisian restaurant (and see how much the waiter/waitress appreciate this!), watching them take turns playing songs on the piano with cousins they've just met, and just seeing them enjoy life because that's what it's all about in the end. This was my 4th visit to Paris but by far the most important and memorable.

At this point I just need to focus on what I need to do to get better. I admit it's not always easy to remain positive and I've definitely had my moments. I'm not going to lie, the last few weeks have been tough.

As I look out the window of the airplane on our flight home from Paris - Toronto, I think about how lucky I've been to have travelled to so many countries - almost 40 in total - for both work and play. As I gaze out the window, Shayne points to the gorgeous sky and yells out "look out there it's amazing daddy get the camera out right now". All I can do is smile and feel incredibly happy and proud.

 The view from the Eiffel Tower in Paris, France