On my closet wall there are a series of pencil and Sharpie lines with dates right next to them.
The first mark one was about shoulder height. That's all the higher I could raise my right arm following a mastectomy and lymph node dissection after my first four rounds of chemotherapy. The marks then climb in 1/2" to 1" increments until I became frustrated and stopped monitoring. Chemo started again and took up most of my attention. I would work on my arm many times over the next two years. I wish I'd known a little more going in.
When we're first diagnosed with breast cancer, making the connections between cancer, treatment and all the related physical ramifications is a complete information overload. Books. Articles. Web pages. Unsolicited Advice. After most people recovered the shock of hearing about my diagnosis the next, most frequently-asked question was, "are you going to lose your hair?"
The fact is that for any cancer patient -- breast or otherwise -- there's a much larger dance going on than coping with hair loss. Hair eventually DOES grow back, and there are virtual communities of BC survivors and programs to help you manage your hairless appearance during chemo. All of us are are grateful for people like Laurie Andreoni (http://www.titillatingturbans.com) and "Look Good, Feel Better" http://www.lookgoodfeelbetter.org/ --a national program that helps women (AND men) look their best during treatment.
Recovering your arm is another story, especially following extensive lymph node dissection and radiation, as happened in my case. Oddly enough, it wasn't until I asked my oncologist/radiologist that a round of lymphadema and physical therapy was prescribed to help get my arm working normally again. I believe physical therapy should be standard treatment extensive work in the axilla -- underarm area -- but this is my take and part of my advocacy. For you, today I'd like to pass on some resources I've come across that can help you recover your arm in a gentle, gradual way.
The Pink Ribbon Program
I've spoken with Doreen Puglisi, M.S., an incredible survivor, college instructor and exercise physiologist who developed a Pilates-based rehabilitation for women recovering from breast cancer surgery. Doreen transformed both her professional -- then personal -- experience with cancer into a successful phased-program. In just six years, the nonprofit organization she established has trained and certified more than 400 Pink Ribbon Program instructors in the United States, Australia and Europe to help women recover their mobility, strength, and range of motion following breast cancer surgery.
The Pink Ribbon Program comes with an excellent guide book with a phased sequence of exercises that help you rebuild your strength and mobility.
If I'd known about Doreen and the Pink Ribbon Program, I wouldn't have shoved an exercise video in the VCR and started stomping around with my ten pound weights (I know, what was I thinking?) As it turned out I did work with a trainer who developed some exercises with flexible bands and very light weights that helped. The Pink Ribbon Program would have been much better.
Two other programs I found listed on SHAPE magazine include, "Beat Cancer Boot Camp: Navy Seal-inspired fitness workouts: a two-month program inspired by the renowned Navy seal fitness program. http://www.beatcancerbootcamp.com/about.htm
The other is Livestrong at the YMCA, a free program that pairs a survivor with a fitness coach and instructors in a custom designed program that include a mix of aerobics, yoga, strength training, and swimming. The program is available in 20 cities. http://www.livestrong.org/site/c.khLXK1PxHmF/b.5119497/
Please let me know how your physical recovery went (or is going) for you. I didn't receive helpful information at all from the Breast Medical Center at MD Anderson, other than an old photocopied list of "things to avoid." I can only hope they are doing better in this regard now. But even if they aren't -- we CAN.
Take care,
Jody
The fact is that for any cancer patient -- breast or otherwise -- there's a much larger dance going on than coping with hair loss. Hair eventually DOES grow back, and there are virtual communities of BC survivors and programs to help you manage your hairless appearance during chemo. All of us are are grateful for people like Laurie Andreoni (http://www.titillatingturbans.com) and "Look Good, Feel Better" http://www.lookgoodfeelbetter.org/ --a national program that helps women (AND men) look their best during treatment.
Recovering your arm is another story, especially following extensive lymph node dissection and radiation, as happened in my case. Oddly enough, it wasn't until I asked my oncologist/radiologist that a round of lymphadema and physical therapy was prescribed to help get my arm working normally again. I believe physical therapy should be standard treatment extensive work in the axilla -- underarm area -- but this is my take and part of my advocacy. For you, today I'd like to pass on some resources I've come across that can help you recover your arm in a gentle, gradual way.
The Pink Ribbon Program
I've spoken with Doreen Puglisi, M.S., an incredible survivor, college instructor and exercise physiologist who developed a Pilates-based rehabilitation for women recovering from breast cancer surgery. Doreen transformed both her professional -- then personal -- experience with cancer into a successful phased-program. In just six years, the nonprofit organization she established has trained and certified more than 400 Pink Ribbon Program instructors in the United States, Australia and Europe to help women recover their mobility, strength, and range of motion following breast cancer surgery.
The Pink Ribbon Program comes with an excellent guide book with a phased sequence of exercises that help you rebuild your strength and mobility.
If I'd known about Doreen and the Pink Ribbon Program, I wouldn't have shoved an exercise video in the VCR and started stomping around with my ten pound weights (I know, what was I thinking?) As it turned out I did work with a trainer who developed some exercises with flexible bands and very light weights that helped. The Pink Ribbon Program would have been much better.
Two other programs I found listed on SHAPE magazine include, "Beat Cancer Boot Camp: Navy Seal-inspired fitness workouts: a two-month program inspired by the renowned Navy seal fitness program. http://www.beatcancerbootcamp.com/about.htm
The other is Livestrong at the YMCA, a free program that pairs a survivor with a fitness coach and instructors in a custom designed program that include a mix of aerobics, yoga, strength training, and swimming. The program is available in 20 cities. http://www.livestrong.org/site/c.khLXK1PxHmF/b.5119497/
Please let me know how your physical recovery went (or is going) for you. I didn't receive helpful information at all from the Breast Medical Center at MD Anderson, other than an old photocopied list of "things to avoid." I can only hope they are doing better in this regard now. But even if they aren't -- we CAN.
Take care,
Jody
4 comments:
I never did physical therapy after my mastectomy. I did have 7 lymph nodes taken with the breast. My surgeon recommended exercises for me to do, such as crawling your arm up the wall and swinging your arm in a wider and wider circle. These helped but were painful at times. I also went to an exercise program for cancer patients at a local hospital. Here a Physical Therapist trained in working with cancer patients reviewed your case, your info from your doctor, and did an exam. Then you worked with a trainer one-on-one with a program made especially for you. This was for general, overall fitness and recovery, not just for your arm. I have been lucky I guess because I have not had any problems with my arm and have almost complete range of movement. I do think that physical therapy and supervised exercise should be a part of a complete treatment program for cancer survivors. Considering the importance of exercise in prevention, recovery and reducing risk of recurrence it would be great if it was facilitated more directly rather than being a 'recommendation'.
Thanks for posting and lots of great resources you have shared here!
Love, Deb
It is shocking to me how many women are not told about proper exercising after surgery -- or better yet shown. You only have to see the testimonials from women replying to my blog on the same subject to see how often this is the case. Post-surgery exercising: what were you told?
When a woman, recently been diagnosed with cancer, has been cut open, had a tumour removed, lymph nodes removed and sent home with an incision and drains, it's understandable that they just want to convalesce even baby themselves (for once). Moving their arm, let alone exercising it, is the furthest thing from their mind.
Half an hour of an educator’s time and proper instructions can help women get back to their regular activities sooner and spare them weeks of unnecessary discomfort. This would not only improve their quality of life but save the health care system money.
I support your advocacy in this area and want to do what I can here in Canada to change things.
Colleen
Editor of www.SharingStrength.ca
Great article.I am right in the middle of this now. I just started PT.
Suzanne
Thanks for sharing this--it's so important for women to be aware of the resources that are available for them!
Post a Comment