There have been many times in my life when I felt down and depressed, none of which can quite compare to how I've been feeling over the past few months. I think I can now better understand and relate to those suffering from depression or mental issues. Feeling useless and sleeping for most of the day is not fun. Trying to force yourself to get up and motivate yourself is hard and extremely frustrating.
On one hand, I should be happy and feel appreciative, and I do. After all, I've been accepted into this exclusive clinical trial at the Juravinski Cancer Centre which initially showed promise. On the other hand, it appears likely that this new experimental drug is just one more drug I am currently on which causes fatigue and depression as a side effect, and also has its limits and could very likely now be near the end of its course for me.
Most of the meds that I am currently on list fatigue as a side effect, and when all combined, results in my recent dilemma: depression - not being able to do much and wanting to sleep the day away. In recent weeks my doctor decided to try and reduce some of the drugs contributing to my fatigue. It seems to have worked and I'm feeling much better these days. I was able to avoid antidepressants (the other option) which I'm happy about. The last thing I want at this point is yet another drug, as I’m currently taking more than a dozen and require one of those pill boxes to help keep track of them all.
Our family had a fantastic trip out west for our annual “Canada Day Adventure”. Every Canada Day we visit a different part of our amazing and beautiful country. Last year we went east to Nova Scotia and previous to that, Alberta and Prince Edward Island. This year we started in Whistler, B.C. and explored beautiful Vancouver Island. We ended our 2 week trip in Victoria B. C. and then spectacular Vancouver. Beautiful, stunning - that's all I can say and we lucked out on the weather as well it was really nice.
I was feeling good the whole time except for a rough time on the plane ride to Vancouver and some issues upon arriving. Luckily that did not last very long and I felt really good throughout our trip. When we returned back home I was feeling good but now leg pain (same leg where I had my recent hip surgery) has once again taken over and put a wrench into my plans of having some fun and pain-free summer days.
Unfortunately last week we received more bad news. When I started the clinical trial a few months ago, my PSA came down from over 100 to 2.5 at one point, an amazing drop (1 through 4 is normal and acceptable). Unfortunately, it has steadily gone up in the past few weeks, once again doubling each few weeks which seems to be the pattern. In the past 18 months, we’ve seen this number drop and increase so many times that I’ve almost grown used to it. It's now on it's way back up again.
The roller coaster ride continues . . .
Last week I had more tests done (CT Scan, Bone Scan, etc) and it appears that there is in fact more cancer activity. I’ve been called in to urgently see my clinical trial oncologist this Thursday and at that time will know better my status and new options (ie: immunotherapy was mentioned) based on these results.
Back in November of 2016, my oncologist at the Grand River hospital in Kitchener gave me a prognosis of 18 months to live. She based it on the fact that the cancer had spread (metastasized) to my back and spine and at that time we did not know where the cancer originated. In fact, the oncologist believed it was Gastro-Intestinal (GI) which would have been a worse prognosis than that it actually turned out to be (prostate). Nevertheless, that 18-month guestimate has remained in my mind ever since she gave me that news, and I’m well aware that the 18-month point has just passed as of May, 2018. In my mind, I keep thinking now that every single day, every single moment that passes after May 2018 is bonus time for me, so I really need to enjoy each minute of each day. This is what I’m trying to do!
Despite the pain and discomfort, I am trying to wake up at a reasonable time each morning and make the most of each day. I have my mountain bike with e-Bike kit working once again, and am trying to ride my bike every day although that is not always possible. I also just set up all my musical audio recording equipment downstairs in our music/jam room, and am having great fun with this once again. Looking forward to having friends come over to do some recording, and also hoping to record the kids as well and their bands.
The kids are doing great. They are enjoying their various camps. Shayne is currently in a 2-week long sleepover camp doing fun things like kayaking, sailing, and swimming. Both kids got their junior black belts in June and we are so proud of them for that amazing achievement. Shayne finished in second place in the final run of the 4-month black belt program, finishing ahead of all contestants including the adults. Incredible! Anika was voted “Sealy Karate Student of the Year”, the youngest to ever achieve this award, and received a beautiful plaque in recognition of this amazing achievement. I can’t describe how surprised we were at the Black Belt Spectacular on June 8 when master Shihan Kevin Sealy called out her name, and described her as his “new hero” regardless of her age and talked about how young people can inspire us (not gonna lie, I cried my eyes out while giving her a standing ovation!). Congratulations Anika my beautiful amazing girl! What would I do without my family, they make me happy beyond words!
That’s all the news I have for now. As mentioned I have a very important appointment this Thursday with my oncologist at the Juravinski Cancer Centre in Hamilton, and at that time, will know more about the results of my Cat Scan, Bone Scan, and recent blood work, and hopefully find the culprit of this new leg pain I have been experiencing. In the meantime, I’m just trying to deal with whatever comes my way and hoping that things will once again turn upwards.
Dear family and friends, thanks again for all your kind words of hope and encouragement it means so much to me knowing that I have so may great friends who really care. Also I can't say enough about how much Kat has helped and supported me over the past 18 months. In addition to helping me and taking me to all my appointments, she even keeps track all of my meds and pill box!! Unfortunately she has had more chores to do here at home as I haven't been able to do everything that I used to do, but she has done an incredible job with the yard bringing dozens of bags of yard scraps to the dump all on her own and re-designing parts of it. The yard has never looked so good I must admit!!
I hope that you are all having a great summer and I will keep you posted on my latest medical news, as well as the new date for the music night which I hope will be in September or October at Manhattan's on Gordon Street in Guelph.
Happy Summer everyone!!
Top of Whistler Mountain about to take the Peak2Peak gondola to Blackcomb mountain.
Anika proudly holding her award for "Sealy Karate Student of the Year".
