Sunday, May 15, 2016

Happy 10th Anniversary to me….

Today is the 10th Anniversary of my bicycle ride across Canada, “Cycle For Life”.  I figured this is a good time to update my blog (which I should have been doing, except for too much has been going on and I just never got to it… )

It is amazing that 10 years has passed since starting the ride.  So much has happened… So many changes in my life…and to my body.

The past 6 months or so have been tough.  I have been doing two different treatments, chemo with Cabazitaxel and radiation with Radium 223 or Xofigo.  I was lucky and had little in the way of side effects. In the beginning, I caught a bug which made me very sick.  It took a while to figure out that it was more of a flu bug than a reaction to chemo.  After that initial bout of sickness I had no problems at all. 

The combination of the two treatments seemed to be working in the beginning.  My PSA’s dropped significantly…but then they started to climb slowly again… We recently stopped the Cabazitaxel because it was no longer working.  Not only did my PSA’s go up, but a CTScan showed numerous new areas of disease.  The lymph nodes in my chest have enlarged and are pressing against my trachea and esophagus. This is causing some problems that I am slowly working around.  I also have a mass growing up against my left kidney… it has caused a problem with urine flow and I had to have a nephrostomy tube put in to help with that. I am feeling a lot better since having that done.  I also have a number of lymph nodes and soft tissue tutors growing in both the left and right sides of my pelvis.

We will probably continue with the Xofigo treatments. They seem to be working quite well.  I have had very little pain in my pelvic bones since starting the treatment.  The only thing that may be a problem is that I have to travel 5 hours to get to the treatment centre.  I have trouble sitting in an upright position for any length of time…and 5 hours is a long time for me!  So far I have managed quite well… hopefully that will continue as we move forward.

There is not much left in the way of treatments… There is a chemo that was used prior to the current chemo treatments.  It was not highly effective, and that is why it really isn’t used any more… but since I’ve used all the current treatments, my oncologist is offering it to me as a last resort.  Cindy and I still haven’t decided whether to go ahead with it or not… it’s a tough decision!

Well, that’s where we are medically…but today is an Anniversary!!  It is a day that I didn’t think I would make it to… but here I am… 10 years later celebrating the beginning of my ride.  The beginning of many new beginnings.  It was the beginning of new friendships and innumerable memories! 

Every day I think about the ride… sometimes it’s just a fleeting thought… other times I get lost in thought as I remember places I saw and people I met.  I love reading the diary I kept during the ride.  I love looking at the thousands of pictures that were taken.  I love talking to people about it… It helps me get through a lot of times when I would rather be elsewhere (like having the nephrostomy tube put in!!) LOL

So, on this 10th Anniversary of my ride, I want to thank all those people who supported the ride in any way… I am grateful to you all!  I want to thank my family, especially my wife, for being there with me.  Without all of you, my dream would never have become a reality…

Until next time….

Posted by John on 05/15 at 02:13 PM
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Tuesday, October 13, 2015

Fall Begins With A New Treatment

Last month brought us the beginning of Fall… and the beginning of a new treatment.

Fall is a beautiful time of year.  This year, so far, we have had great weather… Cool nights and warm days… Unfortunately, we have also had the typical high winds occasionally as well.  Oh well, overall it has been a great Fall.

Over the past few months we have been watching and waiting.  As I talked about previously, we have been waiting to hear about this new treatment with Radium 223. After hearing that financing for treatment was approved back in August, we still had to wait to get Doctor approval and an appointment date.  We finally got that around the middle of September… I was scheduled to have blood work done here on September 22, a number of appointments including treatment on the 23rd and had to be back home for my regular oncologists appointment on the 24th. 

After getting up early on the 22nd to get my regular blood work done, we packed up and headed off to Edmonton.

We spent Tuesday night with our son and his family… We had a nice visit, but Wednesday morning came all too soon!  This day was to bring an IV, injection with contrast, a doctors visit, a bone scan and finally treatment.

On arrival at the Cross Institute they started an IV on me so they could inject the imaging contrast and later in the day, the Radium 223.  Then they injected the contrast and we headed off to see the doctor. The first thing he did is asked how I was able to get coverage for this treatment… Although he knew everything about my medical history, he asked me about how I got coverage for prostate cancer and then this drug.  I told him how we came to have WCB coverage and he was quite After that he explained all about how this treatment works and even some history as to how it came into being.

He also explained that I am only the second person in Alberta to receive this treatment… Prior to me there was a young lady who had been given this for pain relief only… It had been very effective at that.  The reason we had to do the treatment in Edmonton is because he is the only Doctor using it and they are the only place set up to use it…

We talked for quite a while. He also gave us the latest PSA number… It has gone from 55.1 in July to 64.9 in August and was 90.7 on September 22nd.  He explained to Cindy that it still wasn’t anything to worry about, but she questioned that with such a big jump and the increase in pain I’ve been having.  After that he offered to let us see the results of my coming bone scan shortly after it was completed.  He wasn’t going to be there as he had meetings all afternoon, so he arranged for another oncologist to show us.

Cindy and I then had to kill a few hours while the contrast circulated in my body so we just grabbed a bite from the cafeteria then sat and talked until it was time for the bone scan. That went quick and easy. Once it was done we had to wait another 10-15 min before I got the injection of Radium 223.  That took about 10 min.  Shortly after that we were taken to another doctor to see the bone scan…

The doctor explained what we were seeing… A number of areas lit up...those being where the contrast had congregated… He explained that the kidneys and bladder normally show signs because that is where the excess is being excreted by the body… He told us the areas with definite cancer were the left pelvis, which we knew about, and the right pelvis in the ischium as well as an area in my lower back.  I was not shocked at all, as I have been trying to tell the docs I have been having pain there for well over a year now… They kept telling me it was only arthritis… Cindy on the other hand didn’t take the news quite as easily as I did.  In any case, the doctor was very good at explaining it all and answering Cindy’s questions…

We headed out to the car then… We sat there a bit while Cindy vented...then we headed home…

Cindy has done quite well since.  We were in to see our oncology nurse practitioner on Thursday and Cindy was able to vent and have things explained again… It’s going to be tough for a while again… With the rise in PSA and increasing pain in my pelvis and lower back we are very hopeful to get some relief soon.

Over the past 2 weeks, I have been having a fair bit of pain flare in my pelvis and lower back.  This was expected as I had been warned it was very common with this treatment. Unfortunately I have also been having a LOT of nerve pain in my left pelvis and leg.  This pain wasn’t too bad the first week… but has increased significantly over this last week… and it usually happens at night… So I have been up and down through the night taking a lot of extra pain meds with minimal relief. 

The other thing we had to deal with… For the first two days after treatment Cindy and I had to sleep apart and even sit apart to watch tv… I have to stay away from pretty much everybody for a couple of days after treatment.  That wasn’t a good thing for the news we had just heard… But we managed…

Until next time....

Posted by John on 10/13 at 12:41 PM
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Saturday, August 08, 2015

Enjoying Summer!

I’m sitting outside in the shade on a beautiful summer day… The sky is blue with only a few clouds… Life is Good!

A week, or 10 days ago now, we were back to see the oncologist.  My PSA levels continue a slow steady climb… They were at 55.4 last week.  Still nothing that the oncologist is overly concerned about… but it certainly is getting up there and is a concern to my wife...and because I worry about her, I worry about my PSA levels…

I try to calm her concerns because I REALLY am NOT concerned at this point. I feel really good! Yes, I have pain in my hips and back… Some is due to the cancer...some is due to arthritis...some is due to fractures… My mobility has been limited for over a year and a half now. Too much standing, too much sitting upright, sitting on hard surfaces and too much walking all cause increased pain and discomfort.  The biggest problem with this is it limits what I can do… which limits what we can do together.  Thankfully I have all kinds of aids to assist me… So we work around the difficulties and try to stay active together.

On the medical end… We are waiting to hear if I can use a drug called Radium 223 ( Xofigo ).  It’s been in use in some areas for a while...but is not currently being used here.  My oncologist asked if I could get funding for it in case I was approved to use it.  The WCB of Alberta came through after a short deliberation and said they would fund it… The oncologist explained that the drug is given via IV once a month for 6 months… The total cost will be around $150,000 for the full 6 month treatment plan.  He is currently looking into whether or not I can have the drug after all the other treatments I have done ( he is pretty sure I can )...and then how to get me on it.  It is currently in trial at a few cancer centres not too far away...but I don’t qualify for the trials, so he wants to try to get me on it outside of the trials since I can basically pay for it myself.

As I said previously, I am feeling good.  I am tolerating the drug I am on now quite well.  My blood work continues to show no ill effects from the current treatment.  I have been trying hard to do a light dumbbell workout 2 to 3 days a week to work on my upper body strength… I have also been trying hard to walk a little more.  The walking is going well...with just a little extra pain meds I have been able to go for short walks with Cindy and our dog… Short trips to the store go well.  Any major trips to shop or walk the dog require either the wheelchair or the electric scooter.

I am really enjoying this summer… Cindy has done a fantastic job keeping the yard looking great!  We have had some great weather which has allowed me (us) to sit outside and enjoy the sunshine...lounge in the shade...and even spend a few later nights outside just enjoying chats about our past and our present while looking up at the stars.  We have so much to be thankful for...and WE are very Thankful for it All! 

Until next time....

Posted by John on 08/08 at 04:50 PM
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Wednesday, April 01, 2015

Two Weeks Post Surgery…

It’s been two weeks since my hernia surgery… According to the surgeon, the surgery went very well… I healed up quicker than I expected… The staples came out easily and painlessly… The scar looked good.  When the doctor checked me over, he was very happy with the way things looked.  I only had a few days of real discomfort.  I am very happy that it is over with, and look forward to returning to regular activity.  Thankfully the only real limitation he gave me was to not lift anything over 10 pounds… which is pretty easy, other than when our grandson comes to visit over Easter!  But I just can’t lift him… doesn’t mean I can’t hold him and cuddle with him.

The second hardest part of having the surgery was that Cindy had to do even more for me than she already had been doing.  It was bad enough that she has had to begin showering me and helping me dress for the past year or more…. that has sucked… I also move around even slower, although that is improving finally.  For the first time in what seems a long time, I have even been able to help with doing dishes and have cooked a couple of light meals to give her a break… Cindy has been really forced into a roll that she never had to worry about before.  I used to do most of the cooking… I can’t stand long enough to do that all the time any more, so Cindy has stepped in as if she had always been doing it.  It feels good to make her a meal from time to time… other than ordering out..  and going out is even rarer as sitting comfortably for an hour or more to have a meal out is difficult.  So being able to give her a break from time to time will be nice I hope!

Easter is upon us… Our kids are coming home to spend time with us again… Christmas was the last time we all got together… It is going to be fun… I wish I could do more to help Cindy out… but we will all enjoy the coming 4 days together…

Until next time….

Posted by John on 04/01 at 01:10 PM
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Monday, March 16, 2015

Spring Approaches… Treatment Continues…

It’s been just over 5 months since my last post… Things have been going well for the most part… I have settled into the current treatment.

It’s been about 6 months on the Enzalutatimde (Xtandi)… thankfully I finally got off the prednisone and the side effects of that..  now I just have to deal with the side effects of the Xtandi.  For me, the side effects include some very vivid weird dreams, needing more sleep and waking with sore stiff hands and feet.  I am also having much more intense “Hot Flashes”.

There isn’t much we can do about having dreams, although we are slowly figuring out things that cause the worst nightmares… I just have to avoid certain types of shows, thoughts and foods… I have noticed a big difference (good difference) over the past couple of months by keeping thoughts light and upbeat, eliminating late night eating and avoiding certain types of TV programs or movies.

The sore stiff hands and feet always get better quickly just by moving around… usually within just a few minutes they settle… I am very thankful for that.

The “Hot Flashes” are pretty intense at times and are pretty predictable… they come around eating times, right at bed time, and at least once though the night… The worst thing about the hot flashes is the cold that come right after… I can hardly wait for summer (although we have had a pretty mild late winter) so that I can get away from the freezing after every personal mini summer.

On the good side of all of this… My monthly blood work remains good.  All these chemicals that have been infused and ingested haven’t caused too much damage to the parts of me that are ok.  My PSA levels remain “steady”… they have been floating between 20.9 (first after starting Xtandi) and 29.9 (last level) During the past 5 months they have gone up and down by small amounts.  MRI’s, CT Scans and X-rays show no significant changes over the past year (which is a good thing…mostly) They also show no significant signs of healing of the pelvic fracture last year.

So, for the time being, things are good and we will continue with treatment as it is. 

Tomorrow I go in for hernia surgery… I’ve been waiting for years to get this done… At first, I had to put it off due to medications I was taking… Once that changed I started the process… I was promised it would be done and I would be healed by Christmas of last year… last week I got a phone call that some had cancelled their own surgery and I could have that time slot if I wanted it… if not now, it could be months before another opening came along… so tomorrow it its…

Life is good… Spring approaches…

Until next time…. 

Posted by John on 03/16 at 02:43 PM
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