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!

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"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)