Admittedly, this is an experiment with posting video to my personal blog. If anyone in my family objects, I'll be taking it down right away.
Our annual outing to Taylor Island is a highlight of the year for me. Not only is it an opportunity to relax in one of nature's most beautiful spots, it's even more a chance to visit with my own nuclear family members and our hosts. They are all truly wonderful people and I can't imagine my life without them!
My family and I had a great long weekend in the Muskokas with family. But even there, I was constantly reminded of the after effects of colorectal cancer treatment. Coming home, I decided that it was time to take action to mitigate those annoying side effects.
I've decided to lose weight; more precisely to reduce my body mass index. I'll do this gradually by a simple technique that always seems to work for me when I am disciplined enough to do it - counting calories. This time, however, I have the benefit of using a Pocket PC with the necessary software constantly with me (My Personal Diet from VidaOne Inc). The software has a decent database that tracks health measures like body weight and body fat percentage, blood pressure, feelings, etc. It also has a place to record workouts and meals without having to write down everything and then later remember to do calorie, carbohydrate, protein, fat and other nutritional lookups later. This makes the likelihood of maintaining the regimen greater - convenience should never be underestimated in designing a routine.
I haven't done this before in my recovery period mainly for two reasons: 1) I didn't want to impose another set of restrictions on myself immediately following all the restrictions of my treatment period; 2) the research doesn't show any correlation between rectal cancer and BMI, although there does seem to be a clear correlation between colon cancer and BMI. Finally, more recently, the evidence that a prudent diet can cut one's risk for recurrence of generic colorectal cancer seems to mandate at least a diet of whole grains, fruits, vegetables, fish and chicken.
But now, no matter how equivocal the research may be, I want to reduce symptoms like the frequency of bowel movements and to simply feel more flexible, energetic, and lighter. By reducing my BMI over about 45 weeks, even if I don't reduce risk for recurrence, I'll feel better and I hope to have a better quality of life. Not to mention that I should look better in jeans!
Anyway, that's the plan. It will take a while to report on progress, as it will with my new yoga regimen.
A recent study has reported that a prudent diet can decrease substantially the chance of local recurrence of colorectal cancer. Researchers at Dana-Farber Cancer Institute in Boston and Harvard Medical School have demonstrated that a prudent diet of fruits and vegetables, whole grains, poultry and fish and which avoids red meat, refined grains, sweets, desserts and French fries is the way to go. Those who chose a more typical Western diet, when tracked over 5 years, had a recurrence rate 3 times higher than those enjoying a prudent diet.
I've avoided some tough questions in my blog about rectal cancer. Hard to believe, you might say, if you've been with me since November 25th, 2005. After all, I've written about medical technology, about treatment, about emotional highs and lows, about research, about happiness and irritation, about medical mistakes, about organizations and other individuals, about books and articles, about diet and nutrition and exercise. True, but for some other things - some of the truly tough and often embarrassing things - I may only have made allusions or offered hints of troubles.I guess that's natural enough. One always risks "over sharing" when talking about personal medical experiences. But then again, some of those who comment on my blog or email me or call me on the phone, do so because of my apparent honesty and forthrightness in describing my experiences. The casual visitor, some extended family members, friends, and acquaintances who come here are admittedly not particularly interested in some of the details of my experience. And rightly so. This is not easy stuff to write about and it's certainly not easy stuff to read.
If you're a casual visitor, then perhaps this post is not for you. If you've recently been diagnosed with rectal cancer and are considering your options for treatment, then stick with me.
Surgically, you have to think in terms of trade-offs. You can have a colostomy with a permanent stoma and a bag at your side for the rest of your life (an abdominoperineal resection, APR), or you can elect (some might say, if you're lucky) to have what is called a low anterior resection (LAR), an operation which is intended to preserve as much natural function as possible. What natural function? Sexual function, urinary function, and bowel function. I opted for the LAR and had the surgery performed on March 28th, 2006.
The whole point surgically of the LAR - apart from getting the tumor and mesorectum removed with a clear margin - is to save natural function. Not much of a choice, right? Maybe.
When I made my surgical treatment decision, the overwhelming motivation was simply survival, whatever the outcomes. Assuming survival, then my assumption was that an attempt to preserve natural function was better than a colostomy. Unfortunately, I cannot say that I thought much about functional impairments. It's embarrassing to talk about these things, but for anyone considering surgical treatment options, my advice is to try to think carefully about the implications. In fact, recent research has shown that patients have different approaches to the tradeoffs involved.
Sexual Function
My experience since surgery is simple. Sexual function is impaired. Decreased sexual interest, dry orgasms, and difficulty achieving orgasm are par for the course these days. There...I've said it. Now, I have to deal with it.
Urinary Function
The LAR (low anterior resection) is meant to preserve urinary function, although there is always the risk of impairment simply because of the proximity of nerves and muscles controlling sexual, urinary, and bowel function. My experience was not too bad. There was initial loss of urinary function, followed by painful bladder spasms, and then, after release from hospital, an extended period of self-catheterization and gradual recovery of function. Today, it's safe to say that not all function has returned fully, but a couple nightly trips to the washroom strictly to relieve my bladder isn't too high a price.
Bowel Function
Here's my biggest disappointment and frustration, even more than my concern about sexual function. Two words - fecal incontinence. Research has shown that a stoma affects quality of life only slightly. High anterior resections don't seem to affect quality of life at all. But, and here's the kicker, low anterior resections can vary dramatically in the effects on quality of life following surgery.
I don't know if my experience is typical or atypical. Instances of fecal incontinence have been relatively rare, but when it happens, it's awful. In fact, fear of fecal incontinence is so high for me that I am limiting some social contact, I am definitely limiting some forms of outdoor exercise, and am always "on the alert" about how close the nearest washroom is.
It's not just about embarrassment (although that is a huge concern for me); it's also about discomfort and lack of routine. I haven't figured out a diet yet that makes bowel movements and regularity more predictable. So the outcome is that I'm always on edge, often in relatively significant discomfort, and unhappy about the quality of my life.
Given the relatively low impact on quality of life with a colostomy, I sometimes wonder whether I should have chosen that route. Don't get me wrong, I'm really glad to be here and I'm very pleased with my medical care. I'm just not too pleased with quality of life issues these days.
Physical exercise is therapeutic. I guess there really isn't much doubt about the benefits of exercise for cancer patients and cancer survivors in general. The trick is in finding what works for the individual.I remember as I read about Lance Armstrong's battle with testicular cancer being amazed at his tenacity and fierceness in being as active as possible during his treatment. Reading about what worked for him inspired me to try to be as physically fit as possible before my surgery near the end of March 2006. Unfortunately, the desire to be active didn't match what was possible as I embarked on my neoadjuvant combination chemoradiotherapy in January of 2006. The burning and pain, especially in the rectum and anus, made it almost impossible to continue with the training program I had started in December 2005 to get ready for my surgery.
Then, after surgery and the hospitalization for post-surgical complications, I started adjuvant chemotherapy and had difficulty sitting down much less embark on an exercise program. Still, I kept paying my monthly gym membership dues hoping that gradually I would feel good enough to start back up with resistance training and some aerobic conditioning.
But nothing worked. Even walking became difficult. It was a vicious cycle - not feeling well enough to exercise and then feeling worse because I didn't exercise. Then, the guilt on top of it all, realizing that despite my aches and pains, more physical activity would certainly help but not having the willpower to actually do it.
Finally, I canceled my membership at the gym. If I could barely make it to the washroom some days while at work; if I wasn't getting enough sleep anyway, why would I get up early to go to the gym and become frustrated with what I couldn't do; if I couldn't even bend down to pick up heavy objects without fear of further pain or even fecal incontinence from the pressure; what was the point in gym membership?
But I still had to do something. I had to find something that worked for me. So, I dusted off the DVD instructional videos for Total Yoga and the Yoga series, only once again to meet with further frustration. Not only was I incredibly stiff and inflexible, but the sun salutations in the flow series were almost as difficult as anything else I had tried to accomplish. I was, simply put, too out of shape to do even the foundation series.
So, I went back to the very basic beginners approach, using a DVD instructional video from Yoga Journal with the renowned Iyengar teacher, Patricia Walden. Her Yoga for Beginners is gentle enough that I have been successful in doing daily workouts. The video, plus a new yoga mat and yoga bricks from Gaiam, as well as the recently published Yoga as Medicine, and it appears that I'm set with an exercise routine that I can actually do without constant failure.
The chapter on cancer is based primarily on Jnani Chapman's work with a breast cancer patient, Erin Brand, in the San Francisco area. Her approach is extremely gentle and incorporates special breathing exercises, relatively simply poses, and meditation with guided imagery. The asanas illustrated in the chapter are meant only to be indicative of the general approach she takes with her patients. The book is authored by Timothy McCall, both an M.D. and the medical editor of Yoga Journal. As McCall writes, "Yoga is strong medicine but slow medicine." (p.45)
If he's right, and if one week of daily practice means anything, then this slow, gentle approach will certainly yield results, but those results may take quite a while.
There are few days that pass without news of research promising hope for colorectal cancer patients. Yesterday witnessed two announcements worth noting.DO THE CHEMO!
The first might be considered obvious. Adjuvant chemotherapy for Stage II colorectal cancer patients improves survival rates; in other words, if you've been diagnosed with Stage II colorectal cancer and presumably already been treated surgically, the risk of local disease recurrence is lessened by post-surgical chemotherapy, probably following a typical regime of FOLFOX or FOLFIRI.
What is surprising, at least from my own experience with Stage III rectal cancer, is that 5-fluorouracil-based adjuvant chemotherapy isn't standard practice following surgery for Stage II colorectal cancer. An Australian 10-year study between 1993 and 2003 demonstrated a definite survival benefit of adjuvant chemotherapy.
My own experiences with adjuvant chemotherapy were not pleasant, although I was able to continue working some of the time during treatment. Towards the end of my cycle, my sick days grew in number significantly, making performance of my job responsibilities increasingly difficult.
But studies like this are comforting. Despite the treatment-induced illness, it's good to know that adjuvant chemotherapy has solid statistical evidence to warrant the side effects even if one has no evidence of disease following surgery.
HORMONES ARE KEY
The second interesting piece of news is even more suggestive of changing perspectives on the nature of colorectal cancer. Work by researchers at the Kimmel Cancer Center at Jefferson in Philadelphia suggests that colorectal cancer is not so much a genetic disease as an endocrine disease with a hormone solution.
The research indicates that the growth of intestinal tumors is regulated both by size and number by GCC, guanylyl cyclase C, a protein receptor on the epithelial cells of the gastorintestinal tract. Almost all colorectal cancer patients are afflicted by both carcinogenic agents and mutations in the APC gene regulated by the GCC protein.
I know, your eyes are now glazing over. But the point and the promise of this research is that hormone replacement therapy (specifically guanylin and uroguanylin) looks like it can be applied to both prevent and treat colorectal cancer.
IT'S YOUR LIFE
As they say at the Lance Armstrong Foundation, knowledge is power. I'm not saying that you have to read every research article published today. I'm not saying that you need to become an expert on leading-edge hormone replacement therapies. But if, like me, there are days when survival seems harder than it should be, remember the LAF Manifesto, become more knowledgeable, and inspire yourself. Here's a start - watch this video, an excellent counterpoint to the video referenced in my previous blog Never the Same.
It brought me to tears, tears of empathy, tears of recognition, tears of sorrow and grief. I just watched a video entitled, "From Cancer Patient to Cancer Survivor: Lost in Transition" available on Google video here.
I've read stories from other survivors, and they are helpful (see, for instance, the collection of stories from the Lance Armstrong Foundation). I've browsed e-group discussion threads where people with similar side-effects and after-effects talk about their symptoms and problems. I've mentioned my continuing problems with oncologists and family physicians. But, unless you've been there, you'll never realize how depressed you can become, how utterly alone and lonely you feel at times, how changed you are. But in the video, you hear and see people talking like this:
"Once you've had cancer, you have cancer for a lifetime. So you learn to deal with it every day."
"I don't have the luxury of having an ache like everyone else."
"It's a long, long grief...you're not going back to your old life."
"Cancer survivors often have symptoms that go on for years...cancer is a chronic disease where the treatment may be over but the problems persist."
"I remember the day of my last treatment...I was so overtaken by grief...I felt like a warrior without a war...what about my feelings...what about my life?"
"...my sexuality has become an issue...I quite frankly wish we didn't have this problem, but we do."
"My neuropathy from the chemo, my colitis from the radiation...it goes on."
"The person who has experience a serious illness like cancer...has very special needs."
A survivorship care plan is one of the recommendations proposed in the report. Most of the information contained in the sample plan is comprised of medical details, all of which is helpful and absolutely necessary to feeling somewhat in control.
But the psycho-social and financial aspects of survivorship plans strike me as inadequate at best. Loss of work and income, loss of purpose, loss of social contact, loss of opportunities - it's truly tough. Yes, you can transform your life, and that is definitely the direction in which one's efforts and focus must be directed, but there's nothing easy. You'll never be the same.
