Tuesday 31 January 2017

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
 

3 comments:

  1. There you are! I'm so happy to hear from you, and to hear that your hormone treatments have worked so well. My mum's cancer is/was also very receptive to hormone treatment and she feels so fortunate because of it.
    How exciting about Sunnybrook! A wonderful thing, not only to have a new and positive treatment to bolster your optimism, but to know that you're contributing to research that will one day serve so many.
    Congratulations Anika! What an achievement! And what spirit and grit. : - )
    Don't forget to let us know when your stores are running low!
    My warmest vibes to all of you...
    Alice B.

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    1. Alice thanks so much for the awesome cooler full of food and goodies, and also the gift certificates we just had a nice dinner at Milestones! Say HI to everyone at TechComm Manulife for me and I look forward to seeing you all soon !

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  2. Hang in there Ed - but of course, easier said than done - I'm sure it is hard to always be optimistic and energetic each & every day. Don't listen to the odd-makers - anything is possible. I often turn to LeBron when things look dire! (last year's Championship) I had MS for 7 years and today it is completely gone. (the only change I made was a career-change - lot of stress to hardly any today)
    Thank you for your posts - Ivanka (my friend) told me about your condition a few months ago and I have been following your progress. We met many years ago and I think I even gave you a massage! -The next time you're in the Toronto area and need a good massage, look me up: www.elysiumtherapy.com

    Warmest Regards,
    Mary Marentic

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