Wednesday, June 18, 2014

Ten Rounds Completed…

It feels like 10 rounds in a fighting ring, but it’s 10 rounds of chemo that are completed… Number 10 was on June 6th… It went well, even better than I expected… more on that in a bit.

Since my last post, I have done 3 chemo treatments and a couple of Zometa infusions… All have gone well except for the last Zometa treatment… Since I have a Port (to make the infusions easier for myself and those giving it), it was expected to be an hour or less stop at the cancer centre. Unfortunately things didn’t go as planned.  I was hooked up for the infusion...but before starting, the port has to be checked to make sure it is working properly. This time, although fluids were running in, blood could not be drawn back… We tried numerous things… Coughing, flapping my arms like a bird...almost everything but standing on my head… They could not draw blood!  Because of that, we had to make sure the port was still properly in place… Off to Medical Imaging for X-rays to check positioning.  While waiting for the results, an IV was started and my infusion done the regular way.  When the results came it was good news.  The port was still properly placed. The Port was then injected with a clot busting drug and we had to wait around to give it time to work… An hour and a half later and we had flow both ways… thankfully it was working again… So my one hour visit ended up taking almost 3 1/2 hours.

Chemo infusions 8 and 9 went well… With the usual tiredness, nausea and other not so fun side effects… Each time taking longer to get back on track.  So long in fact that I was just feeling better two days prior to round ten… Because of that, and the other side effects that are starting to show themselves, the oncologist and I have decided on going 4 weeks between treatments from now on. Yes...ON…

My last visit with the oncologist was June 5th.  At that time, although all my other blood work came back good, my PSA level was up again… They were at 17.8 this time...up about 3 points from last time.  After all this time we were hoping to see either no movement or a decline… Instead they continue to climb slowly.  The oncologist always reminds me that it’s ok… It’s time to worry when the doubling time is shorter… Although I understand that, I also understand that as long as they are climbing, it’s not optimum for me!  We also discussed continuing the Docetaxel (Taxotere) treatments until my PSA levels take a big jump, or until I can no longer handle the treatments. We talked about the fact that treatment options are extremely limited now...and that continuing with Docetaxel is probably the best option for now.  In the end I agreed with him and we opted to continue indefinitely.  At our last visit we talked about 13 we are talking indefinitely… :(

Friday, June 6th was my last treatment… I wasn’t sure whether my Port would work after the last Zometa treatment… Thankfully, without any problems whatsoever, we got good flow both ways.  My first worry overcome!  The infusion itself went well.  We were in and out in a reasonable amount of time...and I was feeling pretty good considering how crappy I felt just a few days before.

I was feeling pretty good on Saturday, which is normal.  As long as I don’t over do things I can generally function pretty well.  I did a little work out in the yard which actually felt pretty good...and shut it down before wearing myself out. 

Sunday I was feeling a little more tired...again, as usual.  I decided to take it easy all day to avoid crashing… We had a very nice relaxed day...well, I did… I think Cindy worked more than she needed to...but she enjoyed her time out in the yard.

On Monday I was feeling pretty good again, so I opted to do a little more work on the job I started on Saturday… It went well, but I could feel myself wearing out, so I shut down before finishing up… I spent the rest of the day watching Netflix…

Tuesday was the beginning of the side effects kicking in… Nausea… exhaustion… diarrhea… bloating… Sweats and chills… The chills are always on the back of my neck...they get so bad at times that they give me a headache… Covering it up works except I get really hot and then sweat more...which causes more chills… All of these things are normal for me on the fourth day after chemo. It is also the day that my mouth gets tender and some things begin to taste TERRIBLE.

Since then, things have progressed as normal… I have been feeling good at times and not so good at times.  The soreness in my mouth has settled down… my tastebuds seem to be coming back to normal… but I still get tired very quickly.  The pain in my hip flairs on some days, but is really good on others.  It hasn’t really been the same during any of the treatments… other than it flairs for sure on days 3-5 after treatment… then kind of comes and goes.  If I over use my left leg, it will definitely flair then and usually the next day. 

I started doing physiotherapy for my hip about 2 months ago.  It didn’t take long to find that doing the prescribed exercises caused significant increase in pain.  I had to stop for a few weeks just to get things to settle completely again.  Since then, I have been trying to add some of the exercises into my daily routine… I can do very little without causing the flair in pain, so I continue to adjust what, when and how often I do the exercises.  Hopefully I will get to a point where I can exercise my left leg/hip on a regular basis without the long term increase in pain… I could handle it if it was for a few hours or even one day… but when it goes on for a week or more, it seems pointless to do anything.  Living in pain is not really living!!

It has taken me over a week to get this post completed… but I think it is mostly done now…

I have just over two weeks until the next chemo treatment… This week is my next Zometa infusion… I am hoping I have things figured out enough that I will feel better well before chemo… I will let you know (at least that is the plan) how I make out and what the oncologist has to say at our next meeting…

Until next time….

Posted by John on 06/18 at 06:28 AM
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Thursday, April 10, 2014

The Chemo Continues….

I have completed 7 rounds of Chemo with Docetaxel and Prednisone… the next one is in a few weeks… it should be next week, but because of Easter, and the fact that our kids are coming home, I’ve opted to take an extra week off…so the next round will be 4 weeks after the last instead of 3…

A lot of things have happened since my last post… to begin with, Cindy and I became grandparents a few days before my chemo treatment… We have an amazing grandson… It is such a blessing… something that didn’t look like was going to happen 8 years ago when I did my bike ride.  We are so excited and have made a few trips to see the new member of our little family.

Since then I have had two rounds of chemo… Both have gone well, although the last round took a lot out of me for the first week… I think I’ve only been that tired a few times since my treatments began… but I’m sure it’s not the last time.  I was originally scheduled for 10 rounds of chemo… the last time I saw the oncologist, he suggested that since I am tolerating the chemo so well, maybe I should do a total of 11-13 rounds… so I guess only time will tell how many I get through… the nice thing is that if it gets too rough, I can stop…

One other thing that has happened since my last post… I had my PICC line removed…and a Power Port inserted… The PICC dressings were starting to really irritate my arm… It was getting hard to find a place to put the new dressings without aggravating sores that had developed.  The new port will stay with me for much longer… it allows for the current rounds of chemo plus any future chemo I may have to do.  It was quite the procedure… Not painful, but uncomfortable at times… It has been healing nicely and has been used twice already.  The worst part of it so far is that the healing process has caused some itching…and you’re not supposed to touch or rub the area for at least 6 weeks… Thankfully the itching is less today and should stop soon.

The last update for today… We went back up to Calgary a few weeks ago to see the orthopaedic specialist… He looked over everything again and said that in his opinion, I should just continue on as is.  He is afraid that if he tries to replace the damaged hip joint he may find that the pelvic bone is too far gone and won’t hold the new joint.  If that should happen, he would have to remove the hip joint altogether… leaving me without a left hip joint.  That would make getting around even harder than it currently is… At least now I have a hip joint that is functioning… better that than no hip joint!  It definitely wasn’t the news we were hoping for… but he is optimistic that the hip joint should be safe to use in limited amounts.  He also said that if the pain increases in the coming months, then he would certainly be open to trying to repair/replace the joint.

So… that is the major news for now…

Until next time….

Posted by John on 04/10 at 02:15 PM
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Monday, February 10, 2014

Update on Pelvic Events….

It’s been quite the ride over the past month and a half…

The last time I posted, I was hoping to be home for Christmas.  Well, thankfully, that happened.  It was a messed up discharge from the hospital, but I was discharged.  Because I was getting so many doctor referrals, no one really knew who was in charge of me.  I went to see the radiation oncologist and he was unable to offer any help.  I have had too much radiation already, so he refuses to do any more.  He therefore referred me back to an orthopaedic surgeon.  The surgeon was supposed to look over all my tests and let me know if he could offer any help.  I’m not sure what really happened, but the day he was supposed to show up, he ended up being called away just before he was to come and see me… the next day, the on call orthopaedic surgeon came in and basically said he hadn’t really looked at my x-rays or scans, but from the reports he briefly read, there is nothing that he would be able to do for me… An hour later, he discharged me.  I asked the nurse about pain meds and she said the surgeon said to just go back on what I was previously taking.  Cindy came up at lunch time to visit, and found out I was going home.  She was excited, as was I, but also wondering how we were going to make out… So, on Monday, December 23 I made my way home for Christmas.

As soon as I got home I called my family physician.  He was surprised and a little upset that I was home… Mostly because he was never told I was being discharged and he was the doctor in charge.  We talked about pain medication and he sent a prescription over to our pharmacy.

Monday night was pretty rough.  Every time I got up to move… whether to bed, to the couch, or the washroom, the pain would increase incredibly… then I would have to try to sit or lay as still as possible for the next 10 or 15 minutes until the pain would settle again… I was taking pain meds every 4 hours… I had alarms set to remind me when to take my pain meds...but I was usually ready for them before the alarm went off.... but I didn’t want to miss any, because it would take hours to get back on track.  Tuesday I spent most of the day in bed… I did get up for an hour or so and sat on the couch, but couldn’t stay comfortable… Christmas morning arrived and I got up and spent the morning on the couch.  Cindy and I opened gifts and had breakfast (thankfully I had made it a few weeks in advance and it was waiting for us in the freezer!)… I stayed reasonably comfortable as long as I stayed put… It still took 10-15 minutes to settle after moving from place to place… BUT I WAS HOME!!  We had a LOT of company Christmas Day as well… probably too much for me, as I got very uncomfortable and it took quite a while to get the pain to settle… I ended up taking extra pain meds to get the pain under control again.  Cindy was running around trying to take care of me, taking care of the meals and preparing for our sons to come home… We were both pretty exhausted by the end of the day!

The next week went well… the pain stayed controlled for the most part.  I was able to spend more time on the couch each day, but moving still made the pain flare up… Regardless, we had a fantastic Christmas with family and friends!!

New Years was quite unremarkable.  We had been invited to a house party, but I was in NO shape to be going out… So we spent a nice evening at home with our son and daughter-in-law… we did manage to stay up to toast the New Year in… but that was about it…

I had received a cane, walker and wheelchair from the WCB just before Christmast… to help with me getting around.  They come in very handy… I am able to get out for some fresh air with Cindy’s help.  We manage to get out for a tea… or to pick up a few groceries… I can’t spend a lot of time out...but it sure feels good to get out of the house from time to time!!

On January 2nd, I had a visit with one of our oncologists.  He asked about what the orthopaedic surgeon had said to me.  I told him that he hadn’t offered any help...and really didn’t even explain what was going on… The oncologist pulled up the CT scan and showed Cindy and I some of the damage that had occurred.  There are definite breaks in my pelvis… The oncologist asked us if there was any chance of radiation?  I explained what we had been told about already having too much radiation… He then asked if I would be interested in going to Calgary to see and orthopaedic surgeon who specialized in bone metastasis… He figures I am still young and strong enough to handle a more aggressive approach to treatment and we should not accept “nothing” as an option without looking at every possible option. 

A few weeks later we went to Calgary to see the specialist.  He isn’t positive he can help...but he isn’t positive he can’t help… He suggested that I have an injection of anesthetic and steroid directly into my socket hopes that it would bring some relief from the pain.  He is also going to look at my complete radiation history to see if there is any chance that my pelvis would stand up to in a possible hip replacement…

I had the injection done on February 5th… It is quite the process… I didn’t get the almost instant relief that was expected… In fact, Wednesday night was quite bad… not so much pain, but discomfort and it seems i had an adrenaline rush… It took quite a while for me to settle down and get some sleep!  Since then, each day has been a little better.  There has been less pain… I am able to get around a little easier… Things seem to be better!  Hopefully that is a good sign… in any case, I am to go back to the specialist in 5-6 weeks…

So...It has been quite an interesting number of weeks… We are waiting to see if anything can be done… we are waiting to see how chemo is going to go… oh ya… I am still doing chemo… Treatment #5 this coming Friday… YUP Valentine’s Day Chemo… Oh Well… this will be the half way point…

Until next time....

Posted by John on 02/10 at 03:06 PM
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Sunday, December 22, 2013

A Busy Few Months

I had my first round of chemotherapy on November 13th.  I had a PICC line inserted on the 12th, so chemo was quick and went well.  Having a PICC line makes it so much easier for us all. It saves a lot of time as an IV doesn’t have to be started...and when you have hard to find veins, that can result in multiple pokes before finding one. It also saves the warming time etc… So thanks to the ladies in the Jack Ady cancer Centre for educating me and getting it all organized for me!

Unfortunately I caught a cold the same day as my chemo treatment… I think it made me feel worse than the chemo did… I became so congested and coughing (of course only at night when I would lay down and try to sleep), that I ended up spending a few nights sleeping upright in a recliner so Cindy could get some sleep. Thankfully we managed to get over the cold before round 2…

Of course, every week I have to go in and have my PICC dressing changed. So that is one negative… The other big negative of a PICC line is it really limits your activity.  I cannot use my right arm for lifting or any repetitive activities… Being right handed and having the PICC in my right arm has been a learning experience...but I am getting it figured out… Right down to left arm only snow shovelling… Thankfully I have some great friends and neighbours who have been clearing our walks and driveway of the heavy stuff and the lighter stuff I don’t manage to get to.

I just had my second round of chemo on Friday, Dec 6… It went well and I’ve been feeling pretty good so far. Hoping and praying it’s easier from here on out!!  Feeling a bit nauseated from time to time… And tired, but still ok. 

I noticed, on December 9th, that what little hair I have is falling out...not unexpected, but sooner than expected...last year I didn’t loose my facial hair so much...where as this time it is the first to go...bonus! Less shaving!!  Gotta look for the good in everything.

My next chemo treatment is scheduled for January 3… We were allowed to take an extra week between treatments so that we could have a good Christmas with the family. Both our boys and their significant others are coming home right after Christmas… Really looking forward to it…

Here is where the problems begin…

On December 18th I had a sudden onset of lower left back pain and left pelvic and leg pain… I had just headed out for a short walk with the dog and BAM… Man did it hurt… I tried to continue...and managed about a block before having to turn around and go home… I stretched out and the pain subsided… I took it easy and didn’t move much for the rest of the night… I had a lot of discomfort through the night and ended up calling for an ambulance to take me to the ER.  I just couldn’t take the pain and standing made it worse!

Once in the ER they got me on some pain meds and had X-rays done… Of course the moving and posing for the X-rays increased the pain. More meds and some anti-nausea meds and I was finally comfortable. 

The radiologists report stated he couldn’t see any new fractures, although the ER doc thought he saw after consulting with the oncologist and my family doctor, a CT Scan was ordered. Then I was admitted to the 4th floor.

The pain has been under control since being admitted… After 2 full days of bed rest, I was finally able to get up and move… It does cause pain, but that settles quickly. Thank God!!  I’ve had lots of company, which has been great...even got a surprise visit from our youngest son and his girlfriend ... They made the 5 hour drive down just to say hi ...they had to be home the next evening for work… What a wonderful surprise it was… They will be back after Christmas too.... So one good long visit and a short one just before they headed back… NICE!

Well, here we are… December 22nd… Only a few more sleeps until Christmas… I had another visitor this morning… This time the on call doc covering for my family doc over the weekend.  He delivered the news… A new fracture site...this time more around the ball joint...caused by the cancer of course… So now I understand the location and intensity of the pain better… I really have to do some investigation on available treatments now… I have to be prepared for my radiation oncology appointment tomorrow morning… Options are available ... I just need to refresh myself with all of them...then discuss them with Cindy… Then discuss them with the doctors… And Pray for guidance in picking the right course of action for me… It’s worked well in the past...I know it will work now!!

I am hoping to be released before Christmas...but with this new event, I may only get a day pass… In any case, we’ll make the best of it…

Wishing You ALL a Very Merry Christmas!

Until next time....

Posted by John on 12/22 at 11:36 AM
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Thursday, October 24, 2013

The Answer To My Previous Question…

So, What else can go wrong?!?

Last week I had a bone scan done… Monday I saw the oncologist and had a CT Scan done… What else can go wrong?  Well, of course there is always more that can go wrong...but in this case it is just more bad news.  The bone scan showed further involvement in my pelvis… The doctor didn’t go into how much more involvement there was, but he did say it’s time to stop the Abiraterone and move on to something else… So, at this time I have decided to have another go at chemotherapy with Docetaxel… I really wish there were other, better options at this time, but this is probably the best way to go right now.  This, of course is NOT what Cindy and I wanted to hear.  With the news of being grandparents in a few months time, the last thing I want to be doing is chemo...but if it helps, even a little, then it will be worth it.  I’ll see the oncologist again in a few weeks to get the results of the CT Scan…

For the past few weeks, the discomfort in the ischium area of my pelvis has been increasing… I didn’t notice it so much when I broke the bone in my foot, but now that the foot isn’t as sore, my butt is!!  I will be adjusting my pain meds until I can get comfortable again.  The biggest problem I am finding is the energy to do things… I have been forcing myself to take our dog out for a walk… and it feels good to get the fresh air… Hopefully I will be able to continue with short walks every day...maybe even a few times a day, instead of one good long walk… I’ve got to keep moving!!  With a pelvic fracture, a foot fracture and cancer in my ischium, things just aren’t lining up for me to get a lot of

I will also be getting a PICC line inserted...supposedly the day before I start chemo.  This will make it easier for all of my treatments and future blood draws… Having the PICC line means they won’t have to go digging around to find a vein! 

So here we go again!!  Another gets tougher each time… but I WILL NOT back down!… I WILL NOT give in!… I am READY TO FIGHT!!!

Until next time....

Posted by John on 10/24 at 02:12 PM
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