Archive for research

Three tools make exercise possible for cancer survivors

Pilates Girl for PCAGOE

Image by ittybittiesforyou via Flickr

Studies of the benefits of exercise for colorectal cancer survivors all agree on one thing: just do it! Regular exercise during cancer treatments, after surgery and during periods of remission appears to help increase a patient’s sense of well-being, ease side effects and even has been linked to prevention of recurrence.

All good things — but when treatment and surgery knocks your butt firmly onto the couch, how can you possibly follow those recommendations? And how can you avoid feeling guilty on the days when you can’t?

When I was first diagnosed, I was on Folfox + Avastin, a chemo regimen that had me in an infusion chair for two days every other week, followed by sleeping for the better part of 2-3 days as the effects of the infusion wore off. I still worked full-time, on non-infusion days. But when I wasn’t speeding through infusions on decodron and other steroids given to prevent nausea, or working, I was sleeping — especially the weekend following infusions. As I moved from chemo regimen #1 to surgery to chemo #2 to surgery #2 to chemo #3 to radiation + chemo #4 to surgery #3 to chemo #5, the effects of treatment and recovery piled up. Energy during the seven days after an infusion was less than zero. Energy during the off-infusion week was bare minimum, and only if I carefully managed my commitments.

The types of exercise I could do during treatment and can do now during remission are limited by incisions from my xyphoid process to pubic bone and another that cuts under my right rib-cage, by the peristomal hernia on my left side around my colostomy, and by complete lack of energy reserves typical in liver resection patients. Yeah, I know I should exercise — but I am not one for whom exercising helps me push aside fatigue. Far more likely my exhaustion will cause an accident or injury, so I have to be cautious. Safely getting some of that beneficial exercise every day is the perpetual challenge.

Luckily I had three tools at hand that made it possible for me to take advantage of every chance at exercise: television, Google and eBay.

Wait a minute, you’re saying. Those aren’t exercise tools! Ah, but what I discovered in months of being laid up recovering from surgery or flushing chemo out of my body is that there is a wealth of exercise information out in the world aimed at rehabilitation, people with limited movement and people who can’t necessarily do the same kind of cardia and weight lifting that I used to do pre-cancer.

1. Television

I watched my share of QVC, infomercials and late-night TV ads while speeding on decadron during infusions. TV exposed me to variations on pilates, dozens of exercise routines and programs, and some equipment that is easy to maintain and manuever than other machines I’ve used. FitTV and PBS exercise shows let me try-before-buying to find out what type(s) of exercise was comfortable. From those explorations, I moved to:

2. Google

If an exercise program looked like something I could make work from a sitting or laying-down position, I Google’d it. I bookmarked websites, tried out snippets of online routines, checked user reviews. Through all of the advertising venues, I found leads to many exercise resources including:
Sit and Be Fit, the website for the PBS tv show designed to promote healthy aging in seniors with limited mobility
BodyBlade: flexible, weighted bars with exercise DVDs. The shorter, lighter bars are designed for rehabilitation (my physical therapist’s office has an entire wall of BodyBlades in various lengths and weights.)
Pilates (specifically, moving my routine from the Performer machine to an exercise ball, since my Pilates Performer machine is at times too heavy for me to move)
Namaste Yoga, the website for the FitTV program featuring Canadian yoga teacher Kate Potter — who has her own website and a teaching schedule across the country.

3. eBay

Sears isn’t the only place where America shops. Once I’d found the types of exercise DVDs and equipment I wanted to try, I searched eBay. There, I found a second-hand Sport-Blade (similar to the 40″ CXT BodyBlade), complete with DVD and wall chart, for $10. I had taped favorite Namaste episode routines, but an eBay search turned up a full set of six of Potter’s DVDs (two full seasons of the TV series) for $10 plus shipping and handling — less than the cost of one tape from her website. I found a copy of Craig’s Pilates on the Ball in eBay books, in good used condition, for $5 (I picked up an exercise ball at a local Marshalls, but there are exercise balls on eBay, too.) Ultimately, watching Sit and Be Fit episodes on PBS convinced me that I didn’t need to pick up DVDs of that program, but my eBay searches did turn up a second-hand pedal exerciser, a kind of mini-bike I keep under my desk at work. I use it to pedal away stress during long teleconferences and meetings. It cost more in shipping than it cost to buy on eBay; total – $20.

I’ve walked the dogs (mostly) twice every day since diagnosed. But walking my dogs, while it gets me out, isn’t either cardio or balance-reinforcing as much as it’s moving meditation and five minutes morning and evening to put M. through some of her paces. But with the help of television, Google and eBay, I’ve been able to collect the tools to exercise a little bit every day — even when I’m (mostly) flat on my back. Ten minutes of yoga every day, two quarter-mile dog walks, several sets of stairs either at home or at work, a little pedaling during a meeting — I am not running marathons, racing a bike or climbing mountains. But my version of ‘just do(ing) it’ is going to have to do.

Can you exercise while you’re on treatment? What exercise do you choose? How often do you do it?

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Comments to 'Brace Yourself for Pink Overload'

pink ribbon boutique
Image by mtsofan via Flickr

I wrote this comment to Halle Tecco’s guest blog “Brace Yourself for Pink Overload” which appeared yesterday on Huffington Post. Halle’s original post is here:

Read the Article at HuffingtonPost

Halle is the force behind Yoga Bear, which makes yoga available to cancer survivors through several programs — a cause which actually makes a difference in the lives of the survivors it touches. When you give to any charitable organization, make sure your donation is really going to make a difference, and not just give visible (but no financial) support to your cause!

My comment:

“Thanks, Halle, for bringing these intentional giving resources to everyone’s attention. Having cancer is horrible and life-changing, but ‘giving’ and ‘supporting’ a cause based on color of product and legend on the box is NOT the way to help cancer survivors live better and move forward with their lives! Too many people are afraid to say out loud what you’ve said here — think before you pink (or any other awareness color, for that matter!)”

Know where your contribution dollars go, folks — just because the item has an awareness ribbon or is the awareness color of a cancer charity you support does NOT mean that all or even a significant portion or any of your purchase price will ultimately go toward research about the disease or, even more important, support of actual cancer patients.

Think before you give, and give intentionally!

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Join Up: The Army of Women

I subscribe to the news feed and blogs from C3, the Colorectal Cancer Coalition. A couple of days ago, Kate Murphy‘s blog invited readers into the Army of Women, and after reading the goals and projects of Dr. Susan Love’s project, I signed up, too.

To quote Kate, “The Army of Women is recruiting one million women of all backgrounds who will agree to consider participation in research studies. The Army/caBIG effort will link those women with scientists using software tools developed by caBIG to match potential participants to trials.

The Army of Women wants volunteer women with breast cancer, but they also need and want healthy women who haven’t been diagnosed with breast cancer. Volunteers with other cancers or health conditions are also an important part of the project.”

The AOW current project list is impressive. And their goal — research that goes ‘Beyond a Cure’ — is one I am happy to support.

I’m a rectal cancer survivor — with a family history of breast cancer. If the opportunity to serve in the Army of Women is available, I’m going to be there.

The Army of Women is hoping to enlist one million women who are willing to participate in research to take the medicine for breast cancer beyond a cure. Right now, their site counter says they are at 298,332 volunteers. We’ve got a ways to go…but I know that we’ll get there. And I know that through research, we can take life Beyond a Cure.

If you’d like to enlist in the Army of Women, register here.

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I am a statistic.

CT scan showing an intracerebral hemorrhage.

Image via Wikipedia

sta⋅tis⋅tic noun. A numerical fact or datum, esp. one computed from a sample.

I am a statistic.

In July, 2000, I had an intracerebral hemorrhage of unknown origin. (Note: the photo here is not my brain scan!)

The docs believe it was most likely the result of a challenged arterio-venous malformation (AVM) deep in my brain. The AVM began to leak, and hemorrhaged into the left parotid lobe of my brain. But we’ll never really know, since the only definitive diagnosis is via surgery. I didn’t have surgery; my bleed stopped on its own and I began a recovery process that seems like it was only yesterday.

Over 700,000 people in the US suffer a stroke annually. Out of every 100 people who have strokes, only 15 (some stats say as few as 13) of them are hemorrhagic (bleeding) strokes. 10 of those 15 people die within the first 24 hours after the bleed. Two of the remaining five people die within 30 days of the original bleed. And of the remaining 3 survivors, two will need help with activities of daily living (ADL) such as dressing, grooming and eating, for the rest of their lives. Only one of those 15 hemorrhagic stroke survivors will show minimal to no signs of the stroke and appear to have completely recovered. (statistics via:

http://www.theuniversityhospital.com/stroke/stats.htm

http://stroke.about.com/od/strokestatistics/a/StrokeStats.htm

I am that one in 15 bleeding stroke patients out of 100 stroke patients who appears to have completely recovered. It was my first brush with being a statistic…but not my last.

In 2004 I became one of that year’s group of over 115,000 people diagnosed with colorectal cancer. I became one of the 10.9% of people with a colon or rectal cancer diagnosis who was between the ages of 45 and 54. I became one of that select group of patients diagnosed with Stage IV disease—rectal cancer already metastasized to my liver. With that diagnosis, I became one of the 19% of colorectal cancer patients who are diagnosed after the cancer has already spread to distant organs, and the group of patients of whom only 9.8% manage any type of long-term (5 year) survival after diagnosis. Statistics via: http://colon-cancer.emedtv.com/colon-cancer/colon-cancer-statistics.html

In the last five years I’ve also become a statistic in other ways:

  • I’ve become an ostomate.
  • I’ve become one of those Stage IV patients who’s been treated with HAI pump therapy, and one who has survived past the median 3 years post-HAI pump insertion without recurrence in my liver, although I didn’t make it past 21 months progression free survival.
  • I’ve become one of the rectal cancer patients for whom recurrence at the original tumor site was an unfortunate fact.
  • I’ve passed the median survival time post-diagnosis (now up to 30 months for stage IV patients), and just closed the book on month #63.

What I haven’t done yet is die…I’m working to revise those statistics.

But revising those statistics doesn’t mean I can ignore statistics, or only pay attention to the happy ones of which I’m a part—the numbers of people who have had an extended period of NED, who have lived three years without recurrence of liver mets, who have overal survival since diagnosis of more than five years. I can’t be part of the happy statistical group and ignore the other groups—all of these numbers are part of an equation. And I can’t embrace the popular hyper-positive rallying cry of many cancer patients, “I am NOT a statistic.” My life continues because I AM a statistic, one of the numerical facts and individual datum who comprises the sample of rectal cancer patients alive in the US today.

Support, research, money and focus on better care and awareness of colon, rectal and anal cancers is all about money and time—and that is all about numbers. So I am proud to stand up and be counted, be one of the numbers who can help put a face on rectal cancer.

What about you—in what way are you a statistic? Can you embrace being a statistic for the greater good of awareness and increased research and funding? Will you stand up and be counted?

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Fight Cancer: Mohawk Valley communities chosen to participate in nationwide lifestyle vs. cancer study

Relay for Life, 2008Image by Andy Ciordia via Flickr

A story in today’s Utica Observer-Dispatch announced that “The Mohawk Valley has been chosen to participate in the American Cancer Society’s nationwide Cancer Prevention Study 3, and ACS is seeking local people to enroll in the study. The study will examine lifestyle, environmental and genetic factors to determine which may contribute to or help prevent cancer.”

Study participants must fit this profile, according to Peter Cittadino, ACS community executive director:
“All adults ages 30 to 65 who do not have a personal history of cancer are eligible to enroll. Participants must be willing to commit to a long-term study that, although it requires minimal involvement, will continue for about 20 years.”

Earlier multi-community studies established the links between tobacco use and cancer, and between obesity and cancer.

Interested participants can register (a 20-30 min. process) at a table at the Utica Relay for Life on June 13-14 at Mohawk Valley Community College. People interested in participating in the study do not have to be RforL participants to sign up. The registration process involves a survey and some initial measurements on day of sign-up, including giving a blood sample.

Thanks to @foodmedic on Twitter for the heads-up about this study. Sometimes it takes a tweet from Texas to let Central New Yorkers know that they have an opportunity to help researchers make strides evaluating the connections between cancer, lifestyle and diet!

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