talkingaboutcancer.com

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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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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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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Every so often (too often lately), I am overwhelmed by the exhaustion, pain and general discomfort brought on by my treatments.  I hate to complain and, whenever I tell someone how I’m doing, I feel like I’m being whiny.  But sometimes I just …. well …. feel sorry for myself.  For the most part, I only verbalize this from the safety of my home where my dear wife is the only witness to my vulnerability.  She tells me that it’s okay to express myself because she really wants to know how I’m feeling and insists that home should be my “safe place” where I can let down my guard.  Whenever I say, “I’m feeling sorry for myself,” she says, “You’re allowed to.”  And while I hate to admit it, I’ve come to realize that she is right.  As uncomfortable as it is to feel that way and be told it’s okay, I think it is very good advice for anyone having to deal with all the crap that cancer (or any other serious disease) throws your way.

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

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I recently had the rare pleasure of addressing a large group of leaders from the Canadian and Ontario cancer community, including funding bodies, cancer centers, coordinating agencies and government agencies.  The overall topic was Cancer 2.0, focusing on how information technology is changing cancer care.  I participated on a panel called “The ePatient is coming: Prepare to be disrupted.”  In fact, I was the only patient at the conference.

It was a great opportunity to share my personal story, how I used the Internet for support and education, and how I used this information to work with my doctors to make treatment decisions and understand all of the implications and side effects of my treatments.

In the course of my presentation, I went through the steps in my personal cancer story to illustrate that it is a long, involved journey with many, many stages, all of which have requirements for new information and resources.  It is this complexity and longevity that creates a real challenge for organizations who are trying to apply information technology solutions to provide good access to ePatients.  I wanted to share the list of steps/stages with you all because I don’t think people generally appreciate the scope of the journey.  It’s not just five or six steps, but many more.  So here goes:

Diagnosis > Options > Choice of doctor/hospital > Telling family and friends > Scans, tests, staging > Initial treatment > Side effects > Recovery > Support groups > Self image > Surviving/thriving > Health & fitness/nuitrition > Work issues > Sexual dysfunction/intimacy > Disease progression > Fear of recurrence > Mortality/spirituality > Recurrence > Options > More scans and tests > Treatment > Side Effects > Depression/grief > Emotional coping > Fear of no cure > More scans and tests > Metastasis > Symptoms > New treatments > Options > Palliative care > Medications > Side effects > Drug Interactions > MedicAlert > Life expectancy > clinical trials > Career > Finances > My “secret identity” > Quality of life > Things to do (bucket list) > End of life > Those left behind > Hope > Legacy

This is what my life has been about for the past six years and what it will be for the next while.  Everyone with cancer could write their own list and, for many, it may be even longer or more complicated.  For those of you with cancer, think about your journey and perhaps share it with us here.  For others, I hope that this gives you a better understanding that will help you to help those you love.

None of us choose this journey so we must make the best of it.  Understanding it fully is so very important.

Journey on.

Posted by Doug

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People (friends, professionals) are always telling me to “live in the moment” or “live every day to the fullest”. But what does that mean? It could mean … take it easy, relax, enjoy the day. Or it could mean … do something exciting, exhilarating (climb a mountain, scuba dive the Barrier Reef). I think the truth is that it means something different to each person. It also probably depends on how much time you think you have left. Most people have the luxury of not having to contemplate their death so they live their lives as if they will live forever. That’s normal, and there has been a lot written about how mankind buries the idea of mortality in order to live their lives without the fear of death.

Well, that is not the case for people diagnosed with cancer. One of the most profound and disturbing impacts of having cancer is that we are forced to face our own mortality. And once you realize that you can die (possibly much sooner than you thought), you need to face the question of what to do with the time you have left. I’ve just started reading Randy Pausch’s The Last Lecture (having seen it on YouTube and on Oprah). Randy, in his late 40’s is dying of pancreatic cancer and chose to spend his last days spending as much time with his family as possible and in delivering his last lecture on realizing dreams. He has done an admirable job of leaving an incredible legacy for his young children and in teaching an important lesson to the rest of us. I must admit that I feel quite emotional reading his story because, while I’m not in the same boat (with months to live), I can certainly relate.

I find that each day is much more important to me now that I’m living with cancer. While I would prefer to have all my time available to spend with my family and doing the things that I love, I can’t really do that. I need to work because I have a responsibility to ensure my family (my wife especially) can live comfortably if I’m not around. But it also gives me a sense of dignity to be able to continue working and doing a good job. My dear wife thinks I am obsessive (like my mother) because I’m always doing something, but I just feel that things need to be done and I need to be doing them. Does that make sense? Who knows? It’s just the way I am and I know that I’m like that partially because I don’t want to leave things undone. But, if I’m honest with myself, it may be partly because I just don’t know what else to do.

What do you do with the rest of your life? Maybe it doesn’t really matter as long as you are doing something you find productive and comfortable. Maybe living in the moment is just living.

Posted by Doug

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I got a new puppy yesterday! It has brought an immeasurable amount of joy into our house. We have always had one or two dogs who have truly been part of the family. This puppy makes two again, so we have our hands full.

We got our older dog about three and a half years ago. At the time, about a year after my diagnosis and treatment, I felt that I needed a “therapy dog”. The idea was that a dog would give me something to focus on that was totally stress free.  And it worked!  Since my cancer, I have been working hard to live life to the fullest and, while it is a journey, I am making progress. But it does takes work and the stresses of day-to-day living, my career, and the always-there fear of recurrence can take their toll. Often, down-time is hard to find, especially for Type A personalities who always have to be doing something (like blogging). It’s a well-known phenomenon that pets have a calming effect on their owners so that alone is a good thing for stressed-out cancer survivors, but the other thing is that pets (if you love them) require a lot of attention and that takes your attention away from everything else.  Taking them for walks, feeding them, grooming them or just playing with them allows you to focus on nothing but them.  No matter what I’m doing, if it’s with a dog, I’m not thinking about work or cancer, or anything else.  I just feel good.  And if I’m feeling down, cuddling with my dog makes everything seem wonderful.

When I die, I want to come back as a dog in a loving home.

Posted by Doug (dedicated to Maggie)

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