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

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

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

One of the best things that ever happened to me was meeting my dear wife, Dianne.  I’ve written about her many times before, but there are never enough words to truly express what a wonderful person she is and how much she means to me.  As we face the greatest challenge of our life together, the relationship we have has grown ever stronger.  But its complicated.  I love her so much, and rely on her love and support so much, that I have become completely dependent upon her.  I rely completely on the fact that she is always there for me and that, no matter what happens to me, she will always be there to love me and support me.  I consider myself to be a very strong person overall, but I don’t mind admitting that a single cross look or disapproving glance turns me to mush.  It makes it tough sometimes to have a rationale conversation about important things, or even to disagree on something.  Believe me, there are lots of difficult decisions to make and sometimes even simple ones that require some objectivity.  But its hard for me to be objective because I don’t ever want to disagree or do anything to make her think less of me.  Its probably not very healthy, but that’s the way it is.  I’m just a big baby after all.

Sometime in February, I will be interviewed for a 7-part series on PMH hosted by Andy Barrie of CBC radio.  This is a wonderful opportunity and I’m always glad to help out.  In doing a little research of my own, I came across the fact that Andy’s wife Mary passed away from cancer just last year.  Married for some 40 years, she died with Andy and their daughter at her side.  I can’t begin to tell you how sad that made me feel when I read about it, but I also smiled at realizing how lucky she was to have the support of someone like Andy with her.  This says it all.

I’m writing this to emphasize how important it is to have someone you love beside you when dealing with a disease like cancer.  It’s not something you should ever take for granted.  Not everyone has this precious gift, but I have my Dianne.

For better or for worse I know she will always be by my side.

You can’t get much luckier than that.

Posted by Doug

On Dec. 20, we held an “exclusive” family and friends book launch for The Wolf at my Door.  Given the time of year, I was very pleased to have about 75 people attend.  My brother and good friend Gayla surprised we with humbling and heartfelt introductions and then I had a chance to read excerpts from the book.  It was an amazing day and incredibly emotional for everyone who attended.  Many people read the book over the next couple of days and I have received incredible feedback and requests for more copies.  Thank you to everyone who attended, with a special thanks to my daughter Caralia who arranged the event and to Meghan and Dayna who also helped.

Christmas itself was wonderful.  It can be a very difficult time for someone with cancer as the disease becomes a giant elephant in the room and can often make it difficult to really enjoy the spirit of the holidays.  When I was first diagnosed seven years ago, I didn’t even want to have Christmas as I didn’t think we had anything to celebrate.  But this year, we surrounded ourselves with family ( including friends we now consider as family) and had a wonderful time.  Having my nephew’s two-year old son Levi here provided that wide-eyed child component and my eighty-nine year old mother provided a link to a lifetime off Christmas memories.  It was the best Christmas I’ve had for many years and was very important to me as I worry more and more about what the future brings.

Unfortunately, as all cancer patients know, you can never completely get away from your body’s assault on itself.  Leading up to the book launch, my PSA started climbing quickly, evidence the cancer was actively spreading.  The day after the launch, I had another test and found it had jumped way past what it was when I was first diagnosed and we have been unable to pinpoint where it is growing, which is cause for much anxiety.  In the meantime, the pain in my back is increasing.  I tried another type of hormone in a bid to slow things down, but the side effects drove me off that after only a week.

While this was all going on in the background, I pushed it away and did my best to enjoy all the good things that were going on around me, blessed with the support of my wonderful wife Dianne who continues to give me her strength.

So it’s a new year now and I am back to work and trying to figure out how to deal with an advancing cancer that will limit the time I have left.  I wish all of you the very best in the new year and ask that you throw some good wishes my way.

Good health and much happiness to you all.

Posted by Doug

This time it wasn’t a complete surprise as I have been experiencing new pain in my lower right back which has been getting steadily worse almost every day.  Initial scans had shown nothing, but my PSA was up again so I knew something was happening.  When I found out last week that it had quadrupled in 4 weeks, it confirmed that the cancer was actively spreading again (and growing tumours or lesions).  It seems that once it starts up, it moves very fast.  I can only try to slow it down with hormones, but I can’t use the same ones as before (which rendered me bed-ridden) so it will be “sub-optimal treatment” as my oncologist says.

So this Christmas will mix friends, family and fun with scans, doctors and meds.   These kinds of choices are tough enough but they can certainly cast a pall over a happy season.  So that’s my challenge – to deal with all of this without letting it ruin my holiday.  We have a wonderful Christmas season planned with lots of family and friends and, while my situation will be on everyone’s minds (because they love and care for me), I’m not going to let it take away from their enjoyment or mine.

The pain and the side effects will be there like uninvited guests.  They’re hard to ignore, but I will do my best to do just that.

So let’s just remember all of our friends and loved ones who have had to deal with this dreadful disease, especially the ones we have lost, and enjoy all of the life and happiness that this special time brings. We must always remember that we are making memories that will help to carry us through the rough times to come.

Posted by Doug

I have been seeing him regularly since my recurrence and have always left his office with something, some little tidbit that shone a light into some dark corner  But the other day, I gave him little to work with, primarily since I have been following his advice all along. I do not obsess over the terminal nature of my illness (given the current state of science) but focus on trying to make the most of today.  I do not spend much time feeling sorry for myself because I know it won’t get me anywhere. I do not sit around moping about my physical issues but do whatever I can feasibly do and unabashedly ask for help when I need it.  I do not despair over a shortened lifespan, but work hard at my job and at making a difference in meaningful ways. I neither seek nor avoid sympathy, but accept well-intentioned wishes from others.

In summary, I’m doing the best I can with an overall positive and constructive attitude. What more or what else can I do? So while there is really nothing more that Andrew can do for me right now, it feels very good to know that I’m doing the right things. But I’m not letting go of him yet. As the saying goes, I’ve got miles to go before I sleep.

If you have cancer, do not be embarrassed to seek professional help. In fact, if you don’t think you need it, you probably do.

Posted by Doug

I’ve written before about the nervousness I felt coming up to my annual PSA blood tests after my initial diagnosis and treatment and how, just as I was getting used to hearing “undetectable”, my cancer recurred.  Since that time, my cancer has metastasized and scans and tests are now all about how fast it is spreading and all the nasty things that go with that.

Just to keep things interesting, over the past couple of months I have developed a severe pain in my right sacrum area that feels and behaves suspiciously like a new metastasis.  My oncologist arranged for me to have a bone scan and an X-ray and I found myself worrying a lot about what they might show.  It was as if I was waiting for the other shoe to drop, so to speak.  The scared little boy side of me was preparing for bad news yet again, while the rational side of me knew that it didn’t really matter what the scans showed. When they came back clear, I was pleased, although it left me wondering what it is that is causing such sublimely excruciating pain.

I did, however, learn a very valuable lesson from this latest little drama.  I had assumed that the scans and tests would become “routine” for me after a while, given that I knew the cancer was there and that it would eventually spread.  But I’ve come to realize that there is always going to be something to worry about. Regular scans are going to be a part of my life from here on in whether I like it or not.  But I do have a choice.  I can choose to worry over every new little (or big) pain that comes my way, or I can choose to accept that there will be a lot of other shoes dropping and stop freaking out over it.  The uncertainty around how fast it will spread may translate into how many good years I have but, ultimately, I can’t do much about it.  My psychologist has pointed out several times that it would be very sad if I spent the rest of my years worrying about how many years I had left.  This past experience had helped me to really see the truth of that in a way that empowers me to make that choice.

I am a worrier at heart, but I don’t want that to be my guiding life principle.  I have the power to choose to live in peace with my illness and I will do that.

I choose simply to live.

Posted by Doug