Over the past eight months (as those of you who have been following me know well), I’ve been through quite a few ups and downs.  Starting late last year, my PSA started rising and I had to deal with an ever-increasing sense of uncertainty and fear (“here we go again!”).  As it became evident that the tumour in my sacrum was growing, I had to deal with the back and forth of trying to decide between surgery and radiation (or both).  Once I decided (on both), I had to deal with the surgery itself and it’s painful aftermath, which involved dressings, walkers (after I could get off the couch), lots of drugs and sponge baths by strange women (not as glamorous as it might sound).  The recovery period was incredibly frustrating for someone who is always busy doing something.  Once I got back into the “normal” swing of things, I had to face five days of high-dose radiation treatment on the surgery site in an attempt to render it “scorched earth” in terms of cancer cells.  Being my third time through it, I thought it would be kind of ho-hum but, this time, I really suffered from additional pain and incredible exhaustion, especially as I tried to get back into a busy routine at work (that and going to the bathroom every hour due to the radiation effecting my bladder).  Again, all very frustrating.  And then, to top it all off, I forgot to change my pain patch on Sunday night and, by Tuesday, was in some bad kind of withdrawl.  It was nothing like you see with junkies on television, but I felt worse – physically and emotionally – than I ever had before.  It was horrible!  Once I realized what I had done and put on a new patch, I started to feel better - and that was when I found myself saying, “if it’s not one thing, it’s another!”

I’m not complaining (well, maybe I am a little), but I do find this constant up and down very frustrating and I realized how this must be the case for many, many others.  So in the spirit of helping you all understand what living with cancer is all about, I thought I would share.

Oh to be normal……..!

Posted by Doug

I’ve noticed with myself, that my degree of hope changes over time.  On any given day, I sum up my hope as, “the longer I can hang on, the better chance I have of being around when they find a cure.”  But I also hope for other things, such as quality of life and as many years as I can have with my family.  But hope seems to turn to panic when my PSA is rising or my tumour is getting bigger.  These are tangible things that need action.  Once I take action, such as my recent surgery which removed the bulk of my sacral tumour, the panic seems to go away, and I’m back to hoping that it won’t pop up anywhere else for a while and that I will have more time than the stats say.

A good friend of mine, who is a poster child for fighting serious crones disease, a staunch crusader for improvements in the health care system, and a statistician by training, reminded me that there are always outliers and exceptions at both ends of the curve.  So if you think about outcomes, survival rates, efficacy of treatments, etc. as a curve which is fat in the middle and tapers out at both ends, you realize that you personally can be on any part of that curve.  Clearly, the vast majority are somewhere in the bulking middle, but you or I could be on one of those tails.  In my case, I have always seemed to be on the “bad” tail, an exception to the rules, but always bad.  I had about a 0.005% chance of getting prostate cancer at 49.  I had only a 3% chance of recurrence after my “successful” prostate surgery, but my cancer recurred.  I have been told constantly, that my adverse reactions to pain meds (which I need badly), to hormone treatments (which are the only thing that can slow my cancer down) are unusual exceptions.  The fact that my metastasis is primarily in one spot rather than multiple sites is unusual but, in this case, it worked out better for me because I have had it removed and there are no other visible sites for now.  So I bought myself some time… maybe some years.  I’m not in the 25% of men who die within a year or two after prostate cancer metastases, so maybe I will be in the 10% of men that live beyond 5 years.  Or maybe even one of those rare, unusual people who live much longer.  I don’t always have to be in the “bad” tail of the curve and, seeing as I have been so many times, then why shouldn’t it balance out for me to be in the “good” tail for what really counts – survival.  Irwin Barker beat the odds.  Patrick Swayze beat the odds.  Both of them lived longer than the time they were given.  And there are stories we hear all the time of people whose cancer has gone into remission and not come back for years and years.

So no matter what you are told about the progression of your disease or the number of months or years you have left, you can always hope that you are one of the “unusual” ones, the exception, who will beat the statistics and live for many years.  Someone has to be that exception so why can’t it be you.  There is hope for each of us even in the worst of cold statistics.  You can stand tall and tell yourself that you are different and that you are not going to be lumped in with all of the others.  There is always that hope, for Dave, for me, for anyone else looking at the statistics with fear and uncertainty.  If you believe it, and fight the disease, and maintain a good quality of life then, no matter what happens, you will be better for it.

Every survivor gives us hope.  And sometimes, that is the only real weapon we have.

Posted by Doug

There are so many cancer stories out there, because every one is different yet we all experience many of the same emotions and situations.  Throughout my own cancer journey, I have benefited greatly from hearing these stories and that is why I use my own story and others to illustrate the profound emotional impact of cancer on all those who have to deal with it.  Irwin’s story is important for a number of reasons.  First of all, he survived much longer than the doctors’ told him he would, which is a testament to the strength of his character, the support of his family and friends, and the wonderful attitude he had towards life.  It is a lesson to all of us not to take our doctor’s prognosis as fact.  It is, after all, based on the average experience of others and those others aren’t us.  For everyone fighting cancer, particularly if it is terminal, there is hope in Irwin’s story and the stories of so many others who have beaten the odds, often for many, many years.

Perhaps as important is the lessen that Irwin taught me, even though we didn’t know each other that well.  As a successful stand up comedian and comedy writer, humour was a huge part of Irwin’s life and he used humour to help him deal with a diagnosis that would cripple many of us.  Since I met him, I have kept this in mind and try to find the humour in the many things that life brings me.  It’s not always easy and not always obvious, but it’s there if you look.  I highly recommend this to anyone dealing with cancer or any other crappy curve that life throws you.

When we met, he was interested in my book. I gave him a copy and hope he had the time to read it and that he found something in it that helped him.  He wanted to write a book himself about using humour to deal with cancer, which would have been a wonderful gift.  I hope that he was able to get some of his thoughts down and that Joanna finds a way to share it with the world.

You can find out more about Irwin on his website at iriwnbarker.com.  I found a YouTube recording of a radio spot from the day he passed which contained a clip from one of his stand up routines and a chat with one of his close friends who talked about his family and friends being wit him in the hospital over his last few days.  It was sad, funny and poignant and touched me personally in a number of ways.

Irwin, thank you for all you’ve given to the world.  Wherever you are, keep on laughing!

Posted by Doug

For me, I think my recent surgery has at least bought me a couple more years so I find myself thinking in longer time frames.  On the other hand, my new friend Irwin Barker was told he had a year to live about two and a half years ago.  More recently a young friend of my daughter was diagnosed with cancer and told he might have less than a year to live.  When I hear these stories, it makes me think how lucky I am to be alive almost eight years after my initial diagnosis and two since it metastasized.  But luck is all relative.

I have had a good life and am optimistic about having many more good years.  I can’t imagine facing this disease before I’d had a chance to have a life.  I wonder what I would do differently if I was told today that I had only another year.  I am very happy about my current situation but I find I still have difficulty with the uncertainty of it all.  I know what the numbers say, but my disease isn’t behaving according to the norm so I have every right to be optimistic, yet I can’t just put it aside completely.  I’m not sure that makes sense to anyone who isn’t part of this “group”.  Perhaps you think I’m just whining. Maybe your right.

Anyway, I intend to push forward and live my life to the fullest, regardless of how much more time I have.  My hat is off to Irwin who uses humour to get through it all.  And to Dave Noble, let me say that I admire your strength and your attitude.  I wish you well my young friend.

In the final analysis, all we can do is fight this damn disease as best we can, smile as much as we can and say screw the numbers!

Posted by Doug

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

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

Posted by Dianne

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

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

Cancer can deprive women of their breasts and men and women of the ability to have sex.  With that goes intimacy and, in the worst cases, your marriage.  And when a marriage breaks down, the cancer patient loses the one person who should be their strongest ally.  My wife, Dianne and I have struggled with this since I was first treated for Prostate Cancer almost 8 years ago.  We have managed to keep our relationship strong and mutually supportive through some of the worst times.  We are stronger for it and I am so much better off having her beside me.  But intimacy has proved elusive and while we often talk about it, we probably don’t fight hard enough to get it back.  Maybe its because we don’t know how to get it back, or what to do to replace what we’ve lost.  We have a great relationship and we are the strongest cancer couple we know, but I think we are short-changing ourselves and we need to do something about it.

We would welcome any thoughts or ideas from our friends and followers of this blog.

More on this later.

Posted by Doug