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.
"Breakfast with Ed". These are the drugs I need to take with food/breakfast.
