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I consider myself to be a lucky man in many ways.  Although this may seem strange coming from someone with cancer, I’m sure you can appreciate how important it is to look at the whole of your life, to see the good that has come your way in spite of the disease.  When I look back on my life, I see times that I’d rather forget but, for the most part, I see lots of good times and many blessings that have come my way.  These are the things we all need to focus on.

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

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Hi everyone.  As you no doubt noticed, we pretty much shut down over the Christmas holidays.  I did this on purpose as I really wanted (needed) to focus on having an incredible Christmas and some complete down time.  In addition, I wanted to focus on launching my new book!  I’m pleased to say that I was successful on all fronts.

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

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Just when I thought I could relax a bit and enjoy the Christmas season, I get more bad news. For every cancer patient, this can happen at the worst of times. But for a disease that seems to attack indiscriminately, there’s no reason to expect it to honor holidays.

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

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Well, I finally stumped my psychologist!  Over the years, the support and advice I have received from him has been life-enhancing even if not exactly life-saving. It is characteristic of cancer that your life is full of ups and downs, highs and lows, and times when you are lost in the uncertainty of the disease. There are times when you are thrilled at the results of a simple blood test because it tells you that something is working. And there are times when the news is so bad that you glimpse the darkest corners of despair. This is what it is to live with cancer and, if you are to get through the days with dignity and even a little happiness, you need help. While the love and support of your spouse and family can do a lot (I would be lost without mine), you need the objective help of a professional to help you deal with the difficult questions and to ask the questions you may be too afraid to ask yourself. I have been blessed to have someone like Andrew to fill this role for me over the past seven years. The advice he has given me has saved my soul. I talk a lot about this in my book, The Wolf at my Door.

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

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As anyone with cancer knows, regular scans and blood tests are a way of life.  They can be viewed as a lifeline or as a curse.  Results from blood work, X-rays, CT Scans, MRI’s, Bone Scans, etc. can tell you whether your cancer is progressing or not, or they can be frustratingly inconclusive.  They are a huge source of “scanxiety”.

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

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Anyone reading this blog regularly knows that I love to write.  I’ve always been that way and I find the creative process, regardless of what I’m writing, to be very therapeutic for me.  So while there are often some gaps in my writing on this site, I will always be back.  I have a lot to say and to share.

I reached a significant milestone just last night when I submitted the manuscript of my new book to the publisher, hoping to have it available by Christmas.  This book has been 7 years in writing because it is built upon the journal that I kept from shortly after my diagnosis in 2002 through my treatment, recovery and recurrence.  It has been through many revisions and additions as I experienced more and more along my cancer journey.

The working title and subtitle of the book is, “The Wolf at my Door – Cancer in my body, Cancer in my mind”.  I wrote it, much like this blog, to use my personal cancer experience as a way to show cancer patients and their loved ones what they can expect when faced with this horrible disease.  My premise is that the emotional impact of cancer can be as real and as dangerous as the physical disease and affects the patient and everyone who loves them.  “The Wolf at my Door” is a metaphor for the fear that cancer creates and the uncertainty that is always hanging over our heads. 

I wrote this book for several reasons.  First of all, I wrote if for myself, and I encourage everyone to at least keep a journal or diary of their cancer journey.  It’s good for the soul.  I also wrote it for my family and friends, to share with them the intense emotional roller coaster that I have been on.  You can share your own journal with your family and friends to help them understand what you are going through.  You just can’t know unless you’ve been through it personally and they need to know in order to support you.  Thirdly, I wrote it for anyone who has been diagnosed with cancer or who has been told by a member of their family or a friend that they have cancer.  I hope it gets wide distribution for that reason and I hope that you will all get a copy and recommend it to your friends.  In the meantime, if you have an urge to write, we are always looking for comments or for your own personal posts (click on Contact Us above).  As I always say, “Let’s Talk!”

I’ll let you know when my book comes out and how to get a copy.

Posted by: Doug

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Hi everyone.  I’m back after some well-needed vacation and am anxious to reconnect with you all.  I hope you are enjoying what little summer mother nature has given us.  Since I last posted, we have lost Farrah (overshadowed somewhat by Michael Jackson’s death).  This was not unexpected but it is great loss to all of us in the cancer community.

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

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A few weeks ago, there was a special on TV about Farrah Fawcett’s fight with anal cancer.  I was riveted to the screen and wanted to share some of the thoughts I had while watching it and turning it over in my head these past weeks.

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

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Hi there, it is Dianne sharing again.  The first thing I must tell you is that Doug is not only a great husband and writer but also a fantastic “fix-it guy”…Mr. Perfection.  My girl-friends were always jealous at how well he did a project for us (i.e. designing and making a southwestern adobe fireplace in our living room) and how quickly and effortlessly he completed it.  If I purchased a new mirror or picture…it was up on the wall that night or the next.  Since Doug’s recurrence and the overall affects of surgery, hormones, HIFU…etc. he has not had the energy or strength at the end of the day nor the desire to do these things.

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

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I have attended several conferences and meetings recently discussing the role of information technology in patient care.  This is a real interest of mine and one that I have personal experience in.  Shortly after my initial diagnosis (I couldn’t do anything for about a week) I began what turned out to be an insatiable search for information about my disease, treatment alternatives, odds, personal stories, etc.  I used this information, primarily from the Internet, to manage my disease throughout my long, eventful journey.  Admittedly, I am a control freak about my health.  I need to know exactly (or as close as possible) what is happening to me and what I should be doing about it.  But I wouldn’t do it any differently.

I have been surprised recently to learn that many patients do not feel a need to know all about their disease, that they either don’t want to know or they are more than satisfied to follow their doctor’s orders.  Is this denial or blind acceptance of medical authority?  Perhaps.  But who am I to criticize how people choose to cope?  I just hope they are making a conscious choice.

Learning as much as you can about your disease has many, many benefits.  First and foremost, it gives you some control over a disease that is very hard to control and that makes its own rules.  This is important for me but may not be for others.  Secondly, it helps me make decisions in collaboration with my medical team.  This is very important.  The Internet cannot make you a doctor but it can help you discuss and understand diagnoses, test results and alternatives in an intelligent manner.  And not just with doctors.  I’ve found it very useful to explain my situation to family and friends in an understandable way.  This is my support network and they need to know to be able to help.

But most importantly, it can give you confidence that you are getting the best treatment possible.  If you know what the doctors know and, to some extent, what they don’t know, then you are better able to assess whether you are being given all of the information available.  That the decisions you make are based on the best information you and your doctors have.

When you are dealing with a disease that takes so much control away from you and that is fraught with gray areas, confidence is hard to come by.  Grab what you can.

Posted by Doug

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