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