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Hi all. I want to use this opportunity to update you on my situation and let you know how we are dealing with my latest treatment. It has been a week since my surgery and this morning, for the first time, I am feeling some reduction in the level of surgical pain. Frankly, it has been incredibly painful, even with a much higher than usual dose of pain meds. I suppose any back surgery is going to painful, but perhaps it is more so because they were carving an area that was quite painful to begin with.

My surgeon says that he was able to remove all of the tumour that he could see, which is very good news (much better than leaving some cancerous bone to avoid damaging nerves)! So this is something to celebrate. I have my pre-op, base case PSA reading (high for me around 6) for a reference point, yet it takes a month or two for it to clear out of my system post treatment. But I’m hopeful that we will see it drop. If it gets down to “undetectable” than I will be ecstatic.

On top of that, if the surgery leads to an elimination or reduction in the pain I’ve been experiencing from the tumour for the last few years, that could mean I can reduce/eliminate the pain meds! So, all in all, much to look forward to.

This past week has also been very hard on Dianne who remains my numero uno caregiver. Not only has she had to wait on my every need, but she has had to carry out all the household duties that I either did or helped with prior to the surgery. She continues to amaze me, reinforcing how lucky I am to have had her for the last 33 years.

While I don’t feel lucky much of the time (with cancer hanging over my head and with all of the unusual things that have happened to me along the way) I feel a degree of optimism that has eluded me for some time. It’s a nice feeling.

But I’m starting to go stir crazy camped out in my living room!

Many thanks to friends and family for all your support through this.

Posted by Doug

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A lot has been happening lately on the health front that sheds some further light on what it is like to live with chronic/terminal cancer.  As I usually do, I like to use my personal experiences to give you all an idea of the continued emotional bombardment that we face.

The tumour in my sacrum, which has been causing me much pain over the past two years, has grown significantly and, along with it, the pain.  My latest MRI also shows that is is encroaching on some key nerve bundles.  Initially, I was facing a choice between high intensity radiation or quite radical surgery, which would involve removing nerve bundles, cutting into my pelvis, and probably a whole lot of post-surgical pain.  There would also be a risk of having bowel and bladder problems with me maybe having to wear a bag at both ends.  Needless to say, Dianne and I have been stressed to the max with this hanging over our heads.  Our trip to Jamaica and my dear wife’s little surprise (see her previous post) certainly helped to take our minds off it a bit, but the first day we were back, we had a day full of doctors visits and were right back into it all.

My new surgeon (once of the best at this sort of thing) took my case to tumour board for the 5th time to get opinions from other top oncologists and came back with a solution.  They are going to do both surgery and radiation.  However, they are not going to do the radical surgery.  Instead they are going to “debulk” the tumour by cutting away the diseased bone and then fill it with cement.  After 3/4 weeks recovery, they will do the high intensity radiation to try to kill off whatever is left.  With the level of pain and discomfort I’ve been having, this is actually wonderful news.  I was ready to get up on the kitchen table and have Dianne cut it out – that’s how bad it is has been.  The downside of it all is the stress now of worrying about the surgery and side effects.  But even more significant is that we are learning that this disease just keeps on giving and that the decisions, the risks and the implications are getting much more difficult and serious.  And knowing that none of this is going to cure me actually makes it more difficult to decide whether to do a certain procedure, particularly one with risks to my precious quality of life.

So to my family and friends, if I seem a little preoccupied, stressed and uncomfortable, this is why.  But I have high expectations.  If this can relieve the pain and significantly reduce the amount of tumour in my body, then maybe I will get that elusive period of time where I can stop thinking about what is happening to me and get on with enjoying the time that I have (which I also hope will be extended).

Thanks to everyone for your support and prayers.  It means a lot to both of us.  Wish me luck!

Posted by Doug

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I kind of knew that things would get tougher as my disease progressed.  I am expecting more pain (which I have) and lots of other physical issues to deal with depending on where it spreads and how fast.  But I guess it should not be a surprise that the emotional stuff would also get worse.

My PSA is higher than it has ever been and, while looking for new sites of metastases to explain this and the new pain, we discovered that my original site has started to grow – quite significantly.  I have to do something about it because, as my oncologist says, “It’ll start to cause all sorts of trouble.”  She thinks we should radiate again with a higher dose, but wants to take it to tumor board again (for the third time) to get some advice.  When I asked if she could radiate an area that has already been radiated (and in my case, HIFU’d as well), she said simply, “Uncharted territory”.  For some reason, that hit me harder than I would have imagined.  It’s thrown me into the deep end of uncertainty and tradeoffs.  Whether we radiate or explore surgery, I will be taking significant risks….. and there are really no safe decisions.  Surgery would be very serious and potentially dangerous, and repeat radiation could leave my sacrum very brittle right where it connects with my pelvic bone.

But that’s not all.  I am so frightened about this that I am even entertaining going back on hormone therapy, in spite of the severe side effects that this has caused in the past.

It’s uncharted and very dangerous territory.  I need to make some tough decisions.

Thankfully, I have a week in Jamaica to think about it.  Maybe I should just stay there rather than face this, but I know I can’t run away.  The Wolf is in full attack mode!

Posted by Doug

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I’ve had a rough couple of weeks.  It’s normal, and expected perhaps, to have some bad days when you’re fighting cancer, but sometimes those days stretch out a lot.  The ongoing battle with cancer always offers up surprises now and then.  It’s not always visible to those on the outside, but it seems there is always something new.

I’ve been on various types of morphine now for over a year and a half to help me manage the pain of my metastasis, which is actually quite bad.  Over this period, the dosage has increased as I’ve built up a tolerance.  As I’ve tried different types, I’ve had to deal with various side effects. They all cause constipation so that has just become a fact of life for me, but some of them make me too tired to do anything and others have caused me to be highly anxious or even angry.  The drug I am on now is called Fentanyl, which goes on as a patch every three days.  It’s very convenient, for one thing, but has also provided exceptionally good pain control for me over the past many months. Unfortunately (as I found out) it is having some new side effects due to prolonged use (of it or of all the morphines).  I developed difficulty breathing, that sense of not getting enough oxygen in, plus frequent bouts of high anxiety.  It was the combination of the two that prevented me from having the MRI a mentioned two posts ago (see Sometimes it gets to be too much).

I immediately started to reduce the size of the patch (and thereby the dosage), making up the difference with breakthrough (fast acting) morphine pills.  Within a couple of days, my breathing returned to normal and my level of anxiety improved considerably, such that I was able to take that MRI successfully this time.  But I’m not out of the woods yet.  I still feel the anxiety once in a while as well as feeling pretty down about things in general and my situation in particular.  I think about dying before my time and it smothers me with feelings of profound sadness.  Up to now this has been an abstract thing, but it feels more real to me now and the thought of leaving family, friends and life behind is crushing.  Perhaps I’m finally starting to deal with it.  Perhaps these thoughts have been there all along and the anxiety is scraping away the protective covering to expose them.  Perhaps the fact that my PSA is rising to ever higher levels and that I can feel my back pain more are contributing to this.  Whatever.  It’s there. It’s real.  And I need to deal with it.

In the short term, I’m throwing myself back into my work and into my other volunteer activities.  This will take my mind of the bad stuff and let me focus on putting some good energy out to the Universe, which I’m hoping will come back to me in kind.

Then again, maybe I need some more drugs!

Sighhhhhhhhh

Posted by Doug

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I had a strange experience the other day.  It surprised me and, I admit, scared me a bit.

I was scheduled for another MRI to see if we could find a new metastasis that might explain the pain in my back.  This is a normal thing for anyone fighting a disease that is progressing as mine is.  I’d already had a bone scan and a triple CT scan so this was the last one.  I was looking forward to it because I have a need to see something so I can fight it, even if I can’t cure it (something for another post).  During that day, I was feeling a bit anxious but it was a general anxiety rather than anything specific related to the scan.  But I only got as far as laying down on the MRI bed when I realized that I just couldn’t do it.  I knew in my heart that if they locked down that box around my head and pushed me into that tube, I would freak out.  So I politely told the technician what was happening, apologized and walked out.  As I walked up to Dianne, who had come down to support me, I was overcome by a wave of pure, raw emotion and I could see it wash over Dianne as well.  I felt like crying and she looked so… confused.  She couldn’t believe it and I couldn’t explain it.  We left the hospital in a state of shock.

Later, we were able to regroup with our good friend Gayla and analyzed what had happened.  It was simple really. I’m just overwhelmed.  Since before Christmas when my PSA started rising quickly, I have been obsessing over what is happening to me and pushing hard to find some more cancer so I can beat up on it.  I guess that’s normal, but it was quickly becoming too much.  I was already dealing with some severe drug side effects and a bunch of other things and it was all just too much. 

So I’ve had a bad couple of weeks.  It happens.  This whole thing sucks and some days are worse than others.  It’s the gift of cancer.  The kind that, unfortunately, keeps on giving.

I told myself to give it a rest and, for once, I think I’ll take my own advice before it gets any worse.

And it’s so hard on Dianne.   I’m sorry, honey.

Posted by Doug

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Well, my oncologist told me that there is nothing new on my MRI that would explain my new back pain, which is increasing daily.  So how to I feel?  Bummed out.  There’s really nothing else I can do except increase my morphine which has its own quality of life issues.  But we’ll see.  If things play out like they did when it first metastisized, the situation could change very quickly.

Once again, that most painful of things – uncertainty – will follow me around.  On the other hand, as with every other milestone on this journey, now I can put it out of my mind (as best I can) and concentrate on my book launch and on getting ready for what promises to be a most wonderful Christmas.

Posted by Doug

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In the midst of a battle with cancer, we often find ourselves wishing for something that makes others think we are going a little batty.  It is important for all of us to understand that things are just not very simple at times.

Case in point.  In my personal cancer journey, I live with the knowledge and expectation of further metastases.  New lesions will likely occur in the bones and, based on previous experience, will hurt like hell.  So naturally, I expect to experience bone pain that will steadily grow over time.  I also look for increases in my PSA which is an indication that the cancer is actively growing somewhere.  When one or both of these occur, then I will undergo a bone scan and, if necessary, an MRI.

For quite a while now, I have been living with a growing pain in my right rear sacrum area which I thought was very suspicious.  In August, a bone scan and x-ray showed no indication of new mets and my PSA was still undetectable.  With the pain continuing, I had an MRI in October and am still waiting for the results.  Meanwhile, my PSA has started to rise.

So here it is.  I want the MRI to show something.  I want to see a metastatic lesion.  Does that sound strange?  A few people I said this to looked at me like I was nuts.  But here is my reasoning….

I have metastatic cancer that is incurable.  It will spread.  I don’t like it, but I know it.  All I can really do is to treat the pain (and do some chemo to help strengthen my bones a bit).  This means taking more and more morphine as required.  But, I can also have radiation therapy on the site if we can see it. Radiation therapy will reduce the pain and might even stop that particular spot from growing much more.  But so far, since nothing has shown, we can’t treat it and I have to live with a pain that is increasing daily (it seems) and have to take more morphine, which has all sorts of side effects that I wouldn’t wish on anyone.  If the MRI shows something, then we can pinpoint the new lesion and treat it.  If it doesn’t, well…. I’m not sure what I’m going to do.  I sure hope we find something.

Make sense?

Posted by Doug 

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Having cancer is a life-changing and, for many, a life-long event.  For almost five years I was okay to call myself a survivor, because I had survived.  Although my cancer is now back and has metastasized, I still consider myself a survivor (largely because I’m still around) but everything is so very different.  I have had to adjust to so many things.  I can’t simply “get on with life” anymore (as I would tell everyone else) because recurrence and the consequences of advanced disease have become the largest part of my life.  New treatments are called for to address the cancer directly and to treat the symptoms, particularly the pain.  And, as I have discovered, the treatments create their own symptoms which, in turn, have to be treated.

I have four different types of oncologists working with me and I have to see each of them separately.  I’m taking literally handfuls of drugs every day on top of the ones that I have injected every few months.  And I do all of this while working full-time and while trying to enjoy the rest of my life.  New coping strategies are called for.  It’s difficult to talk to people about it.  Most people don’t understand enough about an initial cancer diagnosis, let alone a recurrence or advanced disease.  I’m so lucky that I have a loving wife to share all of this with, although I feel so bad that she has to bear the brunt of my emotions (see my previous post), but her strength holds me together.

However, it seems never-ending…. relentless…. and often overwhelming.  I know that this is normal and I know that, somehow, I have to keep moving forward.  And I do.

But it’s a long, long road.

Posted by Doug

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I’m just about finished my “salvage” radiation treatment for a recurrence of prostate cancer, 5 years after my initial diagnosis and treatment for surgery. I’ve had 32 treatments and I’m getting really, really tired of the whole thing. I lay on the table watching the machine go around me and hear if firing off 60 times from different angles and I wonder, “What the hell am I doing here?” And I have to confess that I keep asking, “Why me?” I’ve asked myself that many times over these past 5 years but it seems less fair this time around. It was bad enough to get cancer, but to have it come back and possibly stay is worse.

I think asking, “Why me?” is normal and I know there is really no answer to that question, but it’s there. What makes it worse is that I have to deal with all the emotional stuff while I’m experiencing significant fatigue and all sorts of bowel and bladder problems from the treatments. Sometimes I feel like crying because it all seems too much, especially when I’m trying to concentrate on doing something else.

Maybe I’m just feeling sorry for myself.

But who ever said that life is fair?

Posted by Doug

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This was a different New Year’s Eve for me as I had my 13th of 33 Salvage Radiation treatments to ring out the old year and hopefully my recurrence. Thankfully, I had Christmas Day and Boxing Day off which gave me a little break. It’s still early in the treatment, but I’m feeling some side effects (manageable) and just want to get it over with.

While there is uncertainty for me in this new year coming, I look forward with optimism and hope, knowing in my heart that I am doing all that I can, that I am doing the right things, and that I am getting the best treatment available.

I wish everyone a very healthy, happy and hopeful New Year.

Posted by Doug

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