Tuesday, July 31, 2007

An Unwanted Journey: Day 0614 - Medicare Plus, a Patient's Perspective

Earlier today, I mentioned the Globe and Mail's front-page article about the Canadian Medical Association's hope to spark a debate about the next generation of Medicare in Canada. This evening, I've been reading some of the publicly available material on the CMA's website that fleshes out exactly what the CMA hopes to do

The CMA calls it Medicare Plus. The policy statement was ratified by the Board of Directors in May 2007 and can be examined here. There are 3 key points in the policy statement:

  1. Medicare must be shored up to ensure timely delivery of services.
  2. Guarantees must be put in place for timely delivery of services.
  3. The spectrum of services needs to be expanded.

Essentially, the CMA is saying we need more doctors, nurses, and other health care professionals in the system. We need better health information technology, national care standards and wait times, a blend of public and private insurance options, a nationally funded pharmacare program for prescription drugs, and greater attention to long-term care for the elderly, especially as my generation ages.


One thing that impressed me was the policy principles upon which the CMA's recommendations are built - timely access, equity, choice, comprehensiveness, clinical autonomy, quality, professional responsibility, transparency, accountability, and efficiency. These are exactly the kind of values that need to be articulated and made the bedrock for further discussion.


The catch is political. Will governments support national standards when the delivery of health care is provincially controlled? Will governments consider a blend of public and private insurance and delivery options? Will governments pander to out-dated sacred cows instead of re-visiting 40-year-old ideals that don't make sense in today's world?


The CMA realizes that the public response will be key to political will. An Ipsos Reid poll of the public response has been tabulated and presented in a PowerPoint slide deck readily available on the CMA's website. The poll makes it clear that older Canadians, better educated Canadians, and women in particular support most of the CMA initiatives to improve Medicare in Canada. My hope is that health care institutions across Canada will promote the initiative, engage in dialogue with patients who use their services, and lobby provincial and national governments to take action. Legal challenges will continue one way or the other (Quebec, Alberta and Ontario), but it is far preferable that we all engage in this dialogue immediately instead of leaving decisions to the courts.

An Unwanted Journey: Day 0614 - Medicine, Money, and Mitt

Some days it seems like there isn't anything simple at all about living with cancer. Here are some examples from just one day.

Cancer survivors worry a lot. They worry about recurrence, they worry about long-term changes to their quality of life, they worry about other people with cancer, they worry about their families, they worry about their burden on whatever medical system is in place in their jurisdiction, they just plan worry.

Sometimes they worry about the treatment they have already received and whether it will or will not actually induce another form of cancer in the future.

What? Really, it's not just paranoia. One of my worries last year during radiation was the possibility of cancer induced by the radiation itself. Now, we have learned of a case of a rectal cancer patient treated with radiation who has developed prostatic sarcoma (cancer in the prostate) as a result of his treatment 4 years previously. So, not only do I need to worry about long-term radiation proctitis from my treatment, I can realistically worry about sarcoma. Not a pleasant thought.

A friend and I have been having an ongoing discussion about universal health care, prompted in part by Michael Moore's Sicko, but also in part by stories that have come to our attention about comparative medical care in Canada and the United States that have nothing whatsoever to do with Moore. My friend says it's simply inevitable that Canada will have a two-tier medical system eventually, and it appears he's right. Today's Globe and Mail featured a front-page article about the CMA's Colin McMillan and his campaign to get the debate going in Canada

As my friend says, "it's all about the money". Rectal cancer patients have a reason to worry about money, whether they live in Canada or the United States, whether they are part of a universal health care system or beneficiaries of private plans. An article appeared yesterday which highlights the costs of drugs used to treat colorectal cancer. What system do you know that can handle costs like this - $120,000 and $96,000 per year per patient for Erbitux and Vectibix respectively for colorectal cancer (as reported in the Journal of the National Cancer Institute)?

Who wants to talk about the money associated with care of cancer patients? Doctors don't. Patients don't. Pharmaceutical companies don't. Politicians certainly don't. But it is something that those of us who deal with cancer have to worry about one way or the other.

Finally, Leroy Sievers complained yesterday, along with many, many others, about comments made by Ann Romney, presidential candidate Mitt Romney's wife in People magazine. She is reported to have said in her anguish about her MS, "I thought, 'Couldn't I just have cancer and die?'"

Leroy and many of his regular readers were understandably upset by the reported comment. Cancer, cancer treatment, and sometimes even surviving cancer is no fun at all. As Leroy says, "It hurts."

So, in addition to everything else, it seems that some days those of us in the world of cancer have to worry about what other people say, especially those with a high public profile.

I know. Sober second thought will probably mean that most of what worried me yesterday will be forgotten tomorrow. Most maybe, but not all. Add "worry" to the after effects of cancer treatment.

Saturday, July 28, 2007

An Unwanted Journey: Day 0611 - Getting Better?

Not too long ago I felt that my recovery was progressing well. I'd had a remarkable 3 days in a week in which I'd had about 6 hours of uninterrupted sleep, something which hadn't happened for over a year and a half. Then, over the last 2 weeks, things seem to be slipping. I'm not sick in the sense of being nauseous or having flu-like symptoms. But I'm always tired, always have far too many bowel movements in a 24-hour period, I have a continually sore bottom, I have trouble walking any substantial distance, and, most disconcerting of all, I have no indication that this is the result of a temporary gastrointestinal upset.

Is it because I'm not eating right or because I'm not exercising regularly? Or is it just coincidental?

I've tried diaries logging what I'm eating and correlating that with bowel movements...seems like a waste of time and far too - pardon the expression - anal an approach. Besides which, the diaries I have submitted to the oncologists don't seem to have elicited any concerns.

Exercise? I appreciate that exercise is important, but I don't know what to do. I've been re-considering yoga since the stretching, flexing and moderate weight-bearing activity are all useful. One asana is especially intriguing. It's called pavana mukta asana or the "wind releasing pose", something which another colorectal cancer patient claimed helped her recovery.

Now I know that some yoga enthusiasts are inclined to project almost miraculous benefits for specific yoga asanas, but even with an appropriate level of skepticism, yoga is one of those exercise categories that could easily be classified as "it certainly can't hurt". Locally, at the HopeSpring Cancer Support Centre in Kitchener, there are regular, freely available exercise classes for cancer patients and those in recovery, including yoga classes. In addition, the centre has specific cancer-related support groups; unfortunately, there is currently nothing related to colorectal cancer, probably because most people don't want to talk about this form of cancer.

Is it coincidental? Here's where having any kind of support network would be truly useful. I'd like to be able to ask questions, provide answers, and otherwise share with others having similar experiences and treatment. In fact, because of this blog, that's happened to some degree. I've had correspondence and calls from people through organizations like the Canadian Colorectal Cancer Association where a few of us have shared our stories publicly. But it's hit and miss.

The oncology channel has a new offering called "Living with Colorectal Cancer" in which individuals share their experiences, but it's so new and there are so few stories available to make it truly useful as an ongoing social networking option for people like me.

So, essentially, I'm left wondering whether or not there are things that I should be doing to improve my situation, whether I'm unusual or, as one oncologist said to me during chemotherapy, "a textbook case". But apart from those times when I have episodes of "survivor anxiety", I'm typically complaining about just wanting to "get better". That may not be the best, most positive attitude to take - but it's me.

Tuesday, July 24, 2007

An Unwanted Journey: Day 0607 - Good-Bye Tammy

I thought I wouldn't say anything at all about George W. Bush's colonoscopy last week or Tammy Faye Messner's battle with colon cancer. I still think there isn't much of value to be said about Bush's colonoscopy, apart from being a very visible example of the necessity of the screening procedure.

Similarly, I share nothing of Tammy Faye's belief in God and an afterlife, but her courage is inspiring. Watching her final interview with Larry King is frightening to anyone touched by colorectal cancer. Even though she was made up, she was totally ravaged by the metastasis of her colon cancer to her lungs. Reading some of the details of her 10-year-long battle, the remissions and apparent cures of both colon and lung cancer, the return to treatment and hospice care, and the obvious debilitating effects - can anyone who has experienced colorectal cancer not be affected?

Ironically, Tammy Faye may well be remembered, not so much for her over-the-top mascara and eyelashes or her involvement with Jim Bakker and the PTL Club fiasco, but for her courage facing cancer and her support for people in the gay community when so many other evangelicals railed against gays and lesbians and counted AIDS as God's punishment against their lifestyle.

My hope is that that final image of Tammy Faye will remain lodged in the memory of people otherwise insulated from death and disease, that her bravery in appearing on Larry King Live just one day before dying will demonstrate the beauty of a triumphal human spirit, and that we who so fear this disease will take comfort in knowing that whatever is taken from us, there is a core that nobody, no disease, can ever steal away.  

Wednesday, July 18, 2007

An Unwanted Journey: Day 0601 - Continue Counting?

Yesterday, I reached the 600-day mark of my unwanted journey. For those of you who haven't been with me since day 1, let me briefly explain.

On 25-Nov-2007, I began my unwanted journey with colorectal cancer. The day before, my gastroenterologist gave me the bad news that I had what he was virtually certain was an 8-cm long malignant tumor in the recto-sigmoid region of the colon. It had probably been growing there undetected for about 8 years, with telltale symptoms only appearing recently and which had led to the colonoscopy he performed just 2 days earlier.

I made a conscious decision to count the days from the time of my diagnosis and to use the blog format to communicate with family and friends about what was happening. Optimistically, I used a 4-character day format. This meant that my unwanted journey could be documented for up to a little over 27 years before the format would reach Day 9999.

Here I am at day 0601, not even 2 years from the day of receiving my diagnosis. But already the count seems both a blessing and an irony. A blessing for fairly obvious reasons - I'm still here; I'm still blogging. An irony because my intent was use the Day xxxx format both as a quick reference and, I hoped, to support my optimism about a positive outcome. After all, it became quickly apparent, as I met with other oncologists and received confirmation of the original diagnosis, that I had at least a Stage 3 and possibly a Stage 4 condition. My hope was that, as the count increased, I would have objective documentation that my optimism was warranted.

In that regard, the counting has worked.

Yesterday, unfortunately, was not a good day. I had rectal bleeding and some discomfort that prevented me from enjoying the milestone of 600 days. But the significance of the day did prompt a conversation in which my wife and I discussed again how milestones for prognosis are measured for colorectal cancer. Five years from the end of treatment is the big one. I have a very long way to go to reach that one. It won't be until early December this year when I reach the first anniversary of when an oncologist told me that there was no evidence of disease (something which they immediately backed off in scheduling further MRIs, CT scans, biopsies, etc). So, even if all subsequent tests are negative, there is about another 1600 days to go before I reach that major milestone.

On the other hand, one could justifiably say that counting the days means I just can't get over it. I'm here. I'm blogging. I'm working regularly. I have most of my life back now. What's the point in counting? Has cancer so defined my life that I am reduced to counting the days?

Yes and no.

Yes, cancer has changed my perspective. Bodily ailments of one kind or another are now always shadowed by concerns about recurrence. I can never sit on the toilet these days without thinking about cancer. So, yes, cancer has shifted my outlook.

No, even though cancer and cancer treatment has reduced some aspects of quality of life, the counting of days has become a kind of periodic celebration. I look at the number - today, for instance, at 601 - and say, "Wow, I've done better than some might have expected. I wonder how many more counts of 600 days I can add to that figure?" Besides which, I still get occasional newly diagnosed visitors coming to my blog and then writing or calling me for advice or just to chat. As the number climbs, that alone should give others reason to hope.

So, I think I'll keep counting, for a while longer at least. Count me blessed.

Monday, July 16, 2007

An Unwanted Journey: Day 0599 - "Junk" DNA and Colon Cancer

I awoke this morning to a Google Alert for a news item claiming that Neo-Darwinian concepts are responsible for the scientific failure to discover a genetic marker for colon cancer earlier than what occurred (see the "news" post here). Casey Luskin, writing for the Intelligent Design clearinghouse Discovery.org, writes, "How much earlier might these non-coding 'junk' DNA causes of disease have been recognized had scientists operated under an intelligent design paradigm rather than a Neo-Darwinian one?"

What an odd argument. For someone who would dearly loved to have had a blood test 10 years ago which would have indicated a gene marker for predisposition to colorectal cancer and thus a reason to perform an earlier-than-normal colonoscopy, this implication that godless scientists held back scientific progress is no mere theoretical difference of opinion.

Let's rephrase the question. If molecular biologists had operated under the assumption that supernatural forces operated in nature to design molecular biological systems, would we have discovered a genetic marker for colon cancer earlier than we did? I don't know. But let me ask you a question.

In the case of so-called "junk" DNA, is it bad science to say "I don't know what it does, therefore it does nothing."? Obviously.

But is this any better? "I don't know what this does, so God must have done it." Personally, I think that is even worse. It isn't even science.

Scientific and medical progress is all about discovering our mistakes and making adjustments. If molecular biologists can be chided for ignoring possible functions in "junk" DNA, so be it. That's the way progress works. But until and unless intelligent design enthusiasts can point to scientific discoveries which could only be made by a previous assumption of supernatural design, I say "Shut Up". People who have colorectal cancer or have been treated for colorectal cancer don't need this kind of "news".

Saturday, July 14, 2007

Pastafarians - The Right Stuff

If you've ever enjoyed a plate of spaghetti and meat sauce, then you owe it all to the creator of the universe, the Flying Spaghetti Monster, known to the devout simply as FSM. Those of us fortunate enough to have discovered this deity and partaken of his sacraments - be it spaghetti, manicotti, rigatoni, or any of the pasta dishes - can only hope that more will join the world's fastest growing carbohydrate-based religion.

Evidence of pasta design is everywhere ... once you know where to look (starting in an Italian restaurant wouldn't be a bad idea). But while pasta is fasta, those needing systematic theology should consult the text - The Gospel of the Flying Spaghetti Monster. Others who doubt both personal dietary experience and sober second thought may be convinced by the FSM's own words, now collected as they were revealed to pastafarians everywhere - GOD SPEAKS! The Flying Spaghetti Monster in his Own Words.

It may take a concerted effort to get our schools to modify their curriculum to teach this gospel alongside evolution and intelligent design. In the meantime, missionary zeal can still accomplish a great deal of good. Pasta'faries are needed to bring the gospel to the world, especially those places where pasta is unknown. And, of course, your prayers are needed for the unfortunate, especially those who don't understand al dente.

In the meantime, just to keep your spirits up, try Flying Spaghetti Monster, The Game.

Wednesday, July 11, 2007

An Unwanted Journey: Day 0594 - Breakthroughs and Bad News

No, for family and friends reading this, the bad news isn't about me.

Actually, things on the personal side of the battle against cancer seem to be improving. The neuropathy in my feet is slowly dissipating. As well, I've had three nights in the past week in which I have had at least 6 continuous hours without a trip to the washroom. That's a milestone of great significance for me personally!

The bad news is about other people. Leroy Sievers is finding that the recurrence of his cancer has infected his spine, which means that he will gradually lose more mobility and muscle tone. A recent correspondent, only 38 years old, is going into surgery tomorrow for a low anterior resection and has come to me for a counterpoint to what appears to be an overly optimistic prognosis from his doctors. And a friend has just called to talk about another acquaintance who has just been informed he probably has colorectal cancer.

And so it goes. The bad news with cancer is something that you never seem to escape, even though each day also seems punctuated with breakthroughs promising so much hope for the future.

This week, for instance, Canadian doctors spoke of a genetic marker for colorectal cancer which may become a blood test soon, thereby enabling virtually everyone to assess their risk profile. Another genetically altered cold sore virus promises to target colorectal cancer, according to an article in Forbes magazine. Omega-3 fatty acids look like they can help reduce colorectal cancer risk, something which pleases me as I ingest 2 tablespoons of Udo's blend each morning with my vitamins and metamucil. And, finally, PET scans have been identified as very useful in determining colorectal cancer recurrence.

As I said, half jokingly, to a colleague at a study group last night when we commiserated about the state of our health and about cancer in particular, "The trick in beating cancer is staying alive." Duh. But it's actually true. With medical advances, technological innovations, and scientific discoveries, as long as you can stay alive long enough to benefit from those treatment regimens, your chances keep getting better.

But it's really the personal breakthroughs that matter the most. As another friend told me yesterday - I think this was really his attempt to help me get over myself - those who survived best in concentration camps during the war or in the gulags of the Soviet Union were those who didn't concentrate on what they had lost. The ones who survived were the ones who accepted their current condition, forgot the past, and looked towards the future, gauging what they could do, not bemoaning what they might have been able to do in better days.

The breakthroughs and the bad news, just like the poor of which Jesus spoke - they're going to be with us always. Get used to it.

Monday, July 02, 2007

Canada Day 2007, University of Waterloo

Originally uploaded by rtfax
Another great day at Columbia Lake on the north end of the University of Waterloo. We waited about 4.5 hours for the fireworks display, but it was worth it!