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

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

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

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

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

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

Today, I would like to talk about acceptance.  This is a major issue for anyone with a serious personal crisis but particularly for those who live with cancer.  Acceptance does not mean giving up or giving in but simply recognizing and deciding to live with the cards you are dealt.  It has been about a year since I was diagnosed with advanced metastatic cancer and, over this period, I have been on a roller-coaster of treatments, pain and side effects.  It has been enough to beat anyone down.  I’ve tried not to let it, but there have been times that I have dispaired of ever feeling “good” again.  It has been physically and emotionally trying to say the least.  But a month or so ago, I started thinking about trying to put all of this aside and to start doing things again. I was afraid, however, that I was slipping into denial, one of the most dangerous things any of us can do.  So I visited my psychologist to get his opinion.  He knows me very well, having been on this journey with me for almost seven years.  It was he who told me earlier that I was going through the “existential experience of living and dying at the same time,” which gave much-needed context to what I was going through.

He explained to me that this was a normal and healthy stage in the whole process of living with cancer.  I was finally coming to “accept” the fact that I couldn’t do any more than I was doing about my disease and that I could give myself a break and really try to enjoy life, even though I may not be able to do all the things that I used to.  Denial is moving on without recognizing and adapting to the fact that things are not the way they used to be.  Acceptance is moving on in spite of that fact.

As an example, I had, up to that point, been holding off on committing to my annual kayaking and camping trip with my buddies but now I was ready to take it on.  I told my buddies that I was going even if they had to carry me up the rocks!  They were very supportive and pleased that I was willing to try.  I knew it would be hard on me but I was willing to accept that.  So I went and had a wonderful time (just this past week).  As expected, it was very hard on me and I spent a good deal of time resting in my tent.  Paddling on the river and through heavy-duty waves hurt like hell but I was thrilled nonetheless.  Unfortunately, I blew out my knee and came home (as my dear wife pointed out) “broken”, which had nothing to do with cancer except that it may have been attributed to my general lack of muscle tone from hormone treatments and my inability to exercise as I once had.  In a bizarre way, though, it’s almost nice to have something other than cancer to worry about.  Nuts, eh?

I don’t think that I will be able to do this trip next year and will have to satisfy myself with shorter trips on calmer waters.  But I did it and I’m glad I did.  Some people had difficulty undertanding why or how I would do this to myself but, as I told them, there are just some things that you need to do.  Acceptance allowed me the freedom to do it and to experience the soul-enriching experience of being in the wilds and on the water.  It was truly liberating!

Life is a gift and it is here for us to experience, regardless of our physical limitations.  We all need to embrace it and try to wrestle as much adventure out of it as we can.  If you are living with cancer, at some point you need to find a way to accept it and to move on, not in denial, but in the spirit of truly “living”.  If your loved ones have cancer, you need to encourage them and support them as much as you can.  Don’t tell them to “get over it”.  Be patient and understanding and help them along.  And when they finally reach acceptance, join them in the adventure.

So what if it hurts?  Accept it!

Posted by Doug

First of all, I remember Farrah as one of the early Charlie’s Angels and she was unquestionably the “it” girl of my generation.  What guy my age didn’t have that famous poster of hers back then?  She was an icon for many years.  I was saddened when I first heard of her battle with cancer a few years back…. one more to add to a growing list of celebrities to join the club.  From the beginning, she committed herself to fighting the cancer and was very open to talking about it in the media.  For that, I tip my hat and say thank you.

This latest show began as a video diary of her doctor visits because, as many of you know, it’s often difficult to remember everything that was said to you, particularly if the news is bad.  I take notes and pay attention myself, yet I still need to have my dear wife with me to ensure I don’t miss anything, something I would recommend to everyone (not my wife, but someone close to you!).  Anyway, her diary turned into a full-scale documentary of her search for answers and her long treatment regime which was full of ups and downs as it is for many of us.  There are several lessons in this for all of us.

First of all, never give up!  Farrah has never given up and has had successes where others told her not to bother.  And while most of what she has done has just prolonged her life, rather than cure her cancer, the extra time (for her) was worth it.

It is very important to consider the trade-offs when you undergo an aggressive approach to fighting cancer.  You can see from the documentary that she suffered considerably throughout her treatments but, to her, it was worth it.  It is as if she has defined quality of life as life itself.  But that may not be for everyone.

For myself, I have stopped the hormonal treatments that slow down my cancer.  At this point, there is nothing to cure it, but slowing it down will prolong my life.  Unfortunately, the side effects of my treatment (which I will write more about to make another point) destroyed my quality of life to the extent that there were days that I couldn’t get out of bed due to the pain I was experiencing.  For me, I couldn’t go on in that way.  For me, quality of life assumes life with some quality to it.

Farrah says that cancer makes its own rules, which is a very insightful comment because every cancer is different and everybody’s cancer experience is different.  If you decide to blindly follow the advice of doctors who steadfastly stick to the established standard of care which is based on the “most likely”, you may miss an important opportunity to find something that better explains your particular situation and which may open the door to alternate treatments or different decisions.  This is your choice, ultimately, but I believe in having as much information and as many alternatives as possible before I make a decision.   And you may, as I have, decide to not pursue a particular treatment for your own reasons.  It’s all okay.  It’s my life, it’s your life.  Just be informed.

The other important lesson in Farrah’s Story is her blunt portrayal of what it is like to live with cancer and to experience the side effects of treatment which, for much of the cancer journey, are worse than the cancer itself.  Farrah lives constantly in pain and in varying degrees of illness and never seems to let it stop her.  I know some of what she is experiencing as I live through my own personal situation (I was going to say Hell, but that would be too melodramatic).  When you hurt everyday, when you are sick more and more often, and when you have nothing left in you at the end of the day, it is tough to keep up a front and harder and harder to fight for your life.  Farrah’s Story clearly illustrated this and both my wife and I could relate to what she went through.  We all need to know this going in and our loved ones need to understand it and support us.  Some people are relatively lucky and one treatment (or set of treatments) does the trick and they can get on with their lives.  For others, it becomes their life.  It can consume you if you are not careful and if you don’t have someone around to hold your hand and to encourage you to fight for the enjoyment of life and for life itself.

There are more lessons in this and I encourage you all to find a rerun of the show and watch it.  Farrah didn’t seem very good near the end and it is clearly getting harder and harder on her to continue the fight.  But she has given us an important gift and we should all be thankful to her for that.

I appreciate all the support I get and I think my friends and family really “get it” now.  This is too important and I don’t want to be putting on a false persona for them.  When I feel bad, I tell them so.  They are my friends, my family, and they can handle it.  And I love them for it.

Thank you, Farrah.

Posted by Doug

In the grand scheme of things I know that having a picture hung quickly is no big deal but, when you have been the kind of guy who this is important to and you can no longer do things that way, it can be very frustrating.  We now have to hire people to do the work that Doug used to do so easily.  Sometimes the workmanship is lacking and he thinks,  ”I could have done that better and quicker,” (and he is right).  This, to him, I know is a loss and it breaks my heart to know he feels this loss.  Sometimes I imagine cancer just taking away pieces of who you were (or perceived yourself to be) piece by piece.  It not only takes away your health but a little piece of you every day in small slices.

 I hate this disease with a passion and am mad at it for doing this to us.  But the great gift that this awful disease has given Doug is both the ability and desire to help others suffering like he is through his writing and gifted ideas he shares on this blog and at conferences and just talking to those he cares about.  He has always been a man that worked not only for his family but his community and now through this amazing site that he cares so passionately about.

Rock on Doug.

Posted by Dianne

The other thing that I struggle with is the feeling of uselessness or inadequacy that comes with not being able to do things.  For someone like me who has always prided himself on being the “man of the house”, I hate it when I can’t do the more physically demanding activities that are necessary when you have your own home.  I really do feel useless at times and feel that I am letting my wife down because she has to pick up the slack.  But what does she say?  “You are not useless.  It’s okay that you can’t do everything you used to.  You’ve got cancer, damn it!”

She’s right.  She’s always right.  It’s good advice.

Posted by Doug