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I met a lady today while I was walking my dogs.  She is a 4 year breast cancer survivor but has been dealing with cancer for 40 years, losing both her parents, one when she was 15.  It got me thinking again about surviving and about hope.

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

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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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Having cancer is a life-changing and, for many, a life-long event.  For almost five years I was okay to call myself a survivor, because I had survived.  Although my cancer is now back and has metastasized, I still consider myself a survivor (largely because I’m still around) but everything is so very different.  I have had to adjust to so many things.  I can’t simply “get on with life” anymore (as I would tell everyone else) because recurrence and the consequences of advanced disease have become the largest part of my life.  New treatments are called for to address the cancer directly and to treat the symptoms, particularly the pain.  And, as I have discovered, the treatments create their own symptoms which, in turn, have to be treated.

I have four different types of oncologists working with me and I have to see each of them separately.  I’m taking literally handfuls of drugs every day on top of the ones that I have injected every few months.  And I do all of this while working full-time and while trying to enjoy the rest of my life.  New coping strategies are called for.  It’s difficult to talk to people about it.  Most people don’t understand enough about an initial cancer diagnosis, let alone a recurrence or advanced disease.  I’m so lucky that I have a loving wife to share all of this with, although I feel so bad that she has to bear the brunt of my emotions (see my previous post), but her strength holds me together.

However, it seems never-ending…. relentless…. and often overwhelming.  I know that this is normal and I know that, somehow, I have to keep moving forward.  And I do.

But it’s a long, long road.

Posted by Doug

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So Henry is Doug. You have seen several posts under the name “Henry” (which is my middle name) talking about a recurrence of my cancer and my treatment with salvage radiation therapy. I haven’t been posting as much as I would have liked because I was focused on finishing my treatment and also on updating my soon-to-be-published book. Recurrence can add a whole new dimension to the cancer journey, to say the least.

What is most telling, though, is that I felt the need to mask my identity. I am a professional with a job, a family to support and responsibilities. Coping with cancer on top of all of this is hard enough, but I was frankly worried about how a recurrence could impact my career now and in the future. It is unfortunately true that many people, upon hearing that you have cancer, automatically think of you as sick and dying. Yes, it can impact your work while you are being treated and while you are dealing with the emotional shock of a diagnosis but, for the vast majority of us, we can very quickly get back to work. We may have to do it part-time for awhile, particularly if our jobs are physical, but we can still work.

The cancer survivors that I know are some of the strongest people I have ever met. If you can handle a major life crisis like cancer and survive, I would argue that you can handle just about anything. That’s certainly how I feel about myself and how I think about anyone with cancer. I wish everyone thought that.

In my case, both with my initial diagnosis and also with my recent recurrence, I have been pleasantly surprised at the response. Telling people at work hasn’t hurt me at all and I am infinitely thankful for the support I have received. I wish everyone was so understanding.

I am a survivor and I am strong.

Posted by Doug

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When we are stricken with cancer, depending on which cancer, its stage, etc., we are faced with many choices. Choices of doctor, choices of treatment, choices to get second (or third or fourth) opinions. They are all terribly important choices that we have to make at a time when our lives have been turned upside down, and each of us will approach these choices in a way that is uniquely us. Many people are very analytical and will vacuum up as much information as possible in order to make the “right” choice. Others feel much more comfortable putting their faith in their doctor(s) because they don’t feel qualified to make some of these choices on their own. I think others may just get dragged along, hoping for the best.

Cancer is a game of numbers. Treatment options are based on statistical, historical studies of large numbers of people. If you happen to fall neatly into certain categories it may seem obvious which way to go, but we are all unique and no one can predict with certainty what will happen to us based on our choices. But we have to make them, because not choosing (or choosing to do nothing) is, more often than not, a death sentence. So we choose our doctors, we choose between radiation and surgery and chemo. Sometimes we choose when to start. And then we throw ourselves at the mercy of those who know what they are doing and who have our best interests at heart.

It is very, very important that we never second guess these choices. While you may be able to stop a course of therapy, there is really no way to reverse or go back. And since we cannot predict the future with any degree of certainty, we certainly can’t answer the “what if” questions. What if I had radiation instead of surgery? What if I had opted for high-dose chemo? What if I had insisted on adjunctive therapies? Maybe you have choices going forward, but you can’t undo the choices you have made.

So make your choices with the best information you can, with the strongest intent you can muster, and put your faith in those you trust. Its the best you can do. Never look back or second guess those decisions and choices. There is nothing you can do about it and it will tear you apart. You have enough to deal with without blaming yourself for “wrong” decisions. And if your original choices don’t work and the cancer recurs or spreads…… well, you did your best, and now you need to make new choices. Take what you have learned and move forward.

Posted by Doug

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August 16th is a milestone for me. It marks my birthday, which is an important date for everyone, but I don’t really consider it a milestone for that reason. It was 7 years ago on that date that I had the last of a series of 33 radiation treatments to my right chest wall. As my oncologist carefully explained to me towards the end of those treatments, for my kind of cancer, I will never hear the words, “You’re cured”. The risk of my cancer returning remains for the rest of my life. Granted, the longer I am cancer-free, the lower my risk, but the risk will always be there.

So every year as I approach my birthday, I get increasingly anxious. I get grumpy, don’t sleep well and become withdrawn. Recently, I had a car accident (not serious, thankfully) because I was so self-absorbed. But doesn’t every birthday mark the great life that I have and the amazing fact that I’m still alive? Shouldn’t I be grateful and ecstatic every year?

I have other milestones, such as my cancer diagnosis date and the time for my next annual check-up, that dredge up similar feelings. What are your milestones, how do you feel around that time and what are your coping strategies?

Let’s talk.

Posted by Ruth

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