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Topic: Kicking LE's butt!! Exercise & Self Care Log

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Mar 7, 2012 04:32PM

Tina337 wrote:

Let's use this thread to post the exercise and methods of self care we are practicing each day to keep our bodies strong and our LE at bay. After experiencing a flare in my arm when I hadn't been as diligent in caring for my truncal LE, I am motivated to begin exercising regularly, performing MLD daily, and wearing prescribed compression garments. Rather than fall down on the job and become overwhelmed by this chronic condition, I want to challenge myself to kick LE's butt into a small, manageable corner! I started today. Here's what I did.

I still have my arm and hand wrapped, and I am also wearing my compression tank with round swell spots on each side in the underarm area 24/7 as per my LE therapist's instruction. This afternoon I did the entire Lebed DVD. Woohoo! It's a start. Yes, that DVD is still creepy! I'll have you know I continued with the exercises even when my husband unexpectedly walked into the room. I started making fun of the DVD, which was kind of fun, so I continued for the rest of the program taunting and making fun of the weird instructions, cheers, and "dancing!", etc. It actually made me feel more powerful and in control, and I liked that!
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 13, 2012 03:40PM - edited Mar 13, 2012 03:41PM by kira

Becky, I saw my LE therapist who measured both arms--my LE arm is smaller than the "good" arm and it's not up from last measurements and checked me out, and declared me all recovered from the flight, and said it all looked good.She thought the PT at the meeting was over the top...

So, I walked the dog and played with her outdoors, and skipped the exercise bike today.

I got professional MLD, but will clear my neck later.

Kira

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 13, 2012 04:11PM carol57 wrote:

Kira, sounds like there's a victory celebration to have at your house tonight, with an arm all recovered from flight.

I did wake-up MLD and 45 minutes of elliptical. Guess I really don't like Lebed, because I looked at the DVD several times and left it in place.  I'll be doing bedtime MLD and start worrying about tomorrow's two flights.  I should lift weights tomorrow morning to stay on PAL track. But I should not lift weights tomorrow morning to avoid stacking up risk factors on a flight day.  Ugh. I hate these damned-if-you-do, damned-if-you-don't decisions. 

Carol 

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Mar 13, 2012 07:38PM - edited Mar 13, 2012 07:40PM by KS1

As Kira mentioned, I'm in the middle of a bad hand flare. My LE therapists have me only wrapping my hand. (If I go higher, my hand swells more and I get parathesias.)

I've tried walking without arm compression, and each time my arm swells -- not terribly, but enough that it takes a couple of days of good behavior to bring it back down. Normally, I walk at least a couple of miles a day, and the weather is wonderful, and I want out!

Has anyone tried kinesiotape instead of compression for non-vigorous exercising? KS1

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Mar 13, 2012 08:51PM carol57 wrote:

KS1, I don't have an answer on the kinesiotape idea --hope someone else does 'cause I'd like to hear about it, too.  But I do want to say I can imagine how frustrating it is to feel so shut out from what you want to do, even a simple walk to celebrate spring--just because of LE.  I would be crestfallen.  I hope you can get on top of this soon.  Best wishes--

Carol 

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Mar 13, 2012 09:22PM Tina337 wrote:

Kira, I'm glad your arm has settled down and recovered from the flight. KS1, I hope your flare is under control soon. I am up and down with the flare in my arm and hand. Had to wrap for a couple days, but now I am wearing my off-shelf sleeve and glove originally used for flying. Can't wait to get my custom sleeve and glove, as these aren't very comfortable. And, it I ever get my stupid vest, then maybe my trunk will feel better, too. Will learn how to wrap on Thurs.

This morning I did node clearing, brief MLD for trunk and went to LE therapist for MLD. Walked for a half hour in the hilly neighborhood. Not an exciting route but it is right outside my door and a decent challenge. Trunk, arm and hand compression all day and evening. MLD when I'm done posting.

I was telling my LE therapist that even my upper back was feeling kind of sensitive. Then I mentioned the YouTube video of the neck and shoulder moves I have been doing. She told me not to do the shoulder move since it brings the fluid from the back forward. She said I should move the fluid from the back of my shoulder downward vs toward the front. She didn't want me doing the back of neck drainage move either since I don't have any issues with my head or neck. Okay. One thing I thought was pretty cool, is that she said my mastectomy scars have healed so well and the skin on my chest moves quite freely. Thank you, myofascial release! When it comes to draining the area above the mastectomy scar, she said I can move the fluid downward under the scar, that I don't have to work around it.
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 13, 2012 11:01PM hugz4u wrote:

Wow, all you girls are pretty serious about kicking butt.  You inspired me. I did the whole Lebed DVD instead of just the opening. Kept my glove/ sleeve /shaper tank on since 8:30 this morn.  I think that is almost a record for me.  Going directly to rip it all off as fast as I can soon as I sign off.  Reminder: Don't forget to touch your skin to resensitize yourself after wearing your garments. 

Evening ladies and butt kickers!

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Mar 14, 2012 08:10AM carol57 wrote:

I did my morning MLD and I'm about to head to the airport. I decided not to lift weights this morning, just to be cautious.  With luck, I'll get some serious walking in at my destination this evening, but generally today I'm taking the less-is-more approach.  Except compression. I'm well compressed in my flying get-up!

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Mar 14, 2012 02:23PM BeckySharp wrote:

Kira--So happy to hear your arm has calmed down.  What an alarmist!

Did my two MLDs and Lebeds today.  Decided to take a day off cardio.  I did have to do a lot of errands and logged 4500 steps on my pedometer.  So I may go outside and walk around my yard to get to 5000. 

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 14, 2012 03:15PM Nordy wrote:

Tina, I probably won't be posting much, but I just wanted to tell you this is a fabulous idea for a thread. Rock on ladies!

Do or do not. There is no try. (Yoda!) 2 large positive nodes before neoadjuvant chemo - all nodes negative after chemo Dx 4/21/2005, IDC, 3cm, Stage IIB, Grade 3, 0/12 nodes, ER-/PR-, HER2-
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Mar 14, 2012 04:45PM carol57 wrote:

I did lots of kegel breathing on two flights and drank so much water, I sprinted to ladies room after each flight. Had a one hour delay at one airport so walked the terminal twice at high speed. Then a really long walk between terminals, which I did super speedy to get aerobic a second time today. Pedometer says 9869 steps today...all airport! Will walk some for dinner shortly, then do MLD before bed. Still sticking to low sodium...boring food!

Carol

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Mar 14, 2012 04:48PM carol57 wrote:

Becky, are pedometers generally accurate for miles? Mine says 4.65 and I don't know if I should believe it. I did calibrate for my stride. Any insights?

Carol

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Mar 14, 2012 06:23PM GottaloveNED wrote:

KS1- have you tried walking with trekking poles? (ski poles meant for hiking). You can get them at almost any sports store. I use them when I walk to keep my hands up, I find it more comfortable, and I don't swell as much. They're not super expensive, so it may be worth a try for you to see if it helps.

Dx 4/1/2009, IDC, 5cm, Stage IIIA, Grade 2, 1/5 nodes, ER+/PR-, HER2+
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Mar 14, 2012 09:15PM Tina337 wrote:

Hugz, they sure are kicking some serious butt!! Hey, Nordy, you have been a major inspiration, and even if you're not posting, I feel like you're here in spirit. If the weather stays this way, I will be on my bike soon! Gotta make sure this flare is in check first though.

Basic compliance today, MLD and compression garments thoughout the day. Had planned to go for a walk tonight, but I sat down at the computer, and when I looked up, it was dark and I had missed my window. Drat. Will also do Lebed tomorrow.

Becky, when you talk about the steps you do by the dam, are you talking about flights of steps or counting each step? One of the things I do inside my house when I am too lazy to walk outside is to climb up and down the stairs. There are eleven steps in our stairway, and I normally climb up and down until I've done 180 steps, so 90 up, 90 down. When I do this, it's normally three times a day. I'm sure my steps are much tinier than the ones near your dam.
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 15, 2012 04:40AM BeckySharp wrote:

Hey Nordy--Good to hear from you.

Carol-I have an Omron pedometer I got online from Walmart.  It counts steps/miles even if in your pocket.  The exercise science professor at my college recommended it.  I find the steps are accurate but I am not sure about the miles.  I calibrate it to my stride for miles but have never felt it is accurate.  I think my stride changes in different places which throws it off.  This pedometer even says it counts steps if in your purse!  I have not tried it.  I have frequently counted the steps off though and it does okay.  Also if I walk 10,000 steps it records close to 5 miles.  If I do some light jogging I would get less than 10,000 steps for 5 miles.

Tina-At the dam there are 122 steps up (very steep).  There are two steps then about a four foot platform between each set of two.  I have to take a step on the platform between each two and a larger platform between  halfway up which takes about three or four steps.  I only go up them not down as I get leg cramps when I go down.  This started happening after starting tamoxifen.  Why not up and only down--go figure??  Doing 180 up and down in your house is great.  When you visit here we can go out to the dam if you have time. 

Have done my first MLD today.  Am getting ready to do weights.  Then I will do one hour on the elliptical as I teach a class tonight and do not have time for the dam.  Then Lebeds and I can get ready to go to work.  Last MLD will be before bedtime.  I figure if I write this down here right now I am committed and cannot go back!  Everyone go kick some LE butt on this Ides of March!

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 15, 2012 09:49AM Binney4 wrote:

Nordy, you're an inspiration -- do drop in here when you can.Kiss

I've done my first MLD and jogging, but no Lebed yet. Yesterday I cleaned my desk and two-thirds of my files -- yikesSurprised! -- and found many things I'd lost or forgotten, plus stuff I have no idea where it came fromEmbarassed. One of those is a 12"x18" poster, sponsored by Juzo, of the entire Lebed opening exercise routine, illustrated with photos.  I have no idea if the poster is still available, but for those with an aversion to the DVD it sure would simplify life. Nice bonus for finally getting around to those files!

Tina, very interesting about the YouTube video! Good point -- I'll keep an eye out about that. Thanks. 

More later!
Binney

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Mar 15, 2012 10:16AM fredntan wrote:

I'm a newbie I guesss. I promise to order that lebed dvd today. sounds likefun

MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/28/2012 Breast, Lymph nodes Surgery 10/7/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/2/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/19/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy
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Mar 15, 2012 10:39AM kira wrote:

I feel like I should just "cut and paste": MLD and exercise bike--although it was gorgeous out yesterday, and I sat in the backyard and watched my DH garden with our dog, and I get a major kick out how she "helps"--he digs a hole and she drops a toy in.

Seriously, this thread does make me feel accountable and recognize the exercise ruts I get into and the things I slack off on--like MLD

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 15, 2012 06:05PM carol57 wrote:

Kira, your dog sounds like he has quite the personality!

Today I began with MLD, and then I had a 1 mile walk to a subway. Was on my feet all day teaching a seminar, which does have the benefit of keeping me moving, however so slowly. Subway back to stop nearest to hotel, and then 1 mile walk to hotel.  Dinner out, which included more walking, so I managed to eke out almost exactly 10,000 steps, and pedometer gives me credit for 4.7 miles today. I think that overstates it.  Its a bit c-c-cold here (Boston) at night, so very motivating to speed up the pace.  I'll do more MLD at bedtime in a bit.  Tomorrow I won't be working, so plenty of time to do some Lebed or the Norton exercises Nitocris posted, and there's lots of walking on the visit-Boston agenda. 

It is amazing how motivating it is to feel accountable for exercise and LE care, knowing I'll be reporting in here.  I hope everyone feels good about today's self-care. It's great to know that others care and are rooting for me.

Carol 

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Mar 15, 2012 06:12PM kira wrote:

Carol, good for you to use the MBTA: one of my daughters lives in Brookline and prefers not to have a car, so she's a public transportation expert.

You are such a dynamo.

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 15, 2012 06:35PM Binney4 wrote:

Finished off this afternoon with some more jogging and the Lebed opening. The jogging feels so good that I'd like to do more of it -- also helps clear my muddled head, so why is it so hard to pry myself out of my chair and do it?FrownTongue out Tried wearing a compression cami and my prostheses for a few hours today but it really aggravates my rib (which I cracked while having a coughing fit -- who knew?!), so I'm back in my grizzly bear disguise: a bulky Jovi long-line vest in bright blue -- really attractive under every shirt in my closet (NOT!!!) Fortunately my family is very tolerant of my bizarre appearance. I'm rich in that regard!WinkCool
Binney

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Mar 15, 2012 09:45PM Tina337 wrote:

Binney, how wonderful you are jogging faithfully! I'm so sorry that your rib is still sore and keeping you in the grizzly disguise.

Kira, I think the ability to say "cut and paste" = habit! That's terrific!

Carol, you are a kick butt machine! How you do it all while traveling amazes me.

Went to therapist today and she showed me how to wrap my hand and arm. I think I understand the fingers but unsure about how to properly wrap that first smaller bandage around my hand. I would still be totally wrapped, but my therapist is so kind and lets me ask a million questions so she was running a little late for next patient. Right as we were starting small bandage she got beeped and left momentarily to let next patient get set up. I got distracted and was thinking about the other patient waiting, and when we went to restart with smaller bandage I lost focus for a minute and fingers were not spread wide. When I got out to car, I realized it was too tight around palm. Came home and unwrapped, trying to pay attention to order. I spent over two hours trying to rewrap so I didn't have to diassemble the gauze, etc. I thought I had the best chance of redoing immediately since I had just seen her do it. Unfortunately, I couldn't figure out how to do the hand, even with photos in the special link here or my therapist's handout. In the end, I realized I needed full movement to prepare to travel tomorrow and removed everything.

I'm supposed to practice at least twice before I see therapist on Tuesday, and I am packing wrapping materials. Did someone recently post a video of this? I know if I wrap it wrong, I could force fluid into my hand, which I am still struggling with, so I wouldn't wear the wrap. Just want to keep practicing to get the fingers down and then try the bandages. I'm sure it's impossible to relay this verbally, but any tips for practice as far as pressure of hand vs forearm and upper arm would be helpful. Unfortunately, I did the typical late packing (waiting until tomorrow morning to finish) and my hand is not good. I have been behind and feeling disorganized from last weeks flare . . stressed and overwhelmed all week, not getting much done. What the hell is wrong with me?? I know, Binney, I know!! Just very frustrated right now.

MLD at therapist today, compression, and will do MLD when I get in bed. Not looking forward to 3 hr car ride tomorrow. Hope to get some walking in tomorrow afternoon and evening.
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 16, 2012 04:22AM carol57 wrote:

Binney, I think you are rich in many regards, and wow, do you ever share the wealth!

Tina, how very frustrating!!!  Good luck with the car ride; just keep doing those kegel breaths and some arm pumping as you travel.  And drown yourself in water so you're hydrated and so you have to stop once or twice to get the body moving for a few minutes.

I can't help with any wrapping suggestions, but I can say that I'm very glad you're able to use this forum to put that frustration in words (you too, Binney, on the cracked rib).  Just pounding it out on a keyboard knowing so many can relate makes a big difference, don't you think?

I'll be walking tons today, as DH and I are officially doing a tourist day (but probably eathing what I should not be eating).

Carol 

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Mar 16, 2012 12:09PM hugz4u wrote:

 This thread makes me feel like I am accountable  and in a excercise club, It is working! Did lebed opening twice yesterday and each day before. Also clocked  in walkies.

This weekend may be hard to get my excercise in but you know what, I  am not going to worry about flubbing up.  I am just going to carry on and keep exercising as time permits.  My family said it is the single best thing I can do for myself and I have to agree and to top it off you girls are such amazing encouragement! This thread is no brainer, a win ,win situation.

About wrapping, I will be requesting a lesson from my MLD girl. for my tool box.  I know we have "how to wrap" instructions on the top section of the lymphedema page and that is really a wonderful post, but like Tina I would love, love, love. to see video/dvd/ or some other media demonstration of this. Got any ideas?

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Mar 16, 2012 01:12PM Nordy wrote:

Well, thank ou for the warm hellos! I have an app that I love to use - some of you may like it in addition to posting your exercise. It is not perfect, because I would like to be able to track all of my nutrients, specifically vit d, but you can log your food and it keeps track of cal, fat, protein, potassium, sodium, cholesterol, vit c and a, iron and calcium. You can also log exercise there. It is called my fitnesspal and I think you can download it for most of your tablets and smart phones. I love it!

Do or do not. There is no try. (Yoda!) 2 large positive nodes before neoadjuvant chemo - all nodes negative after chemo Dx 4/21/2005, IDC, 3cm, Stage IIB, Grade 3, 0/12 nodes, ER-/PR-, HER2-
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Mar 16, 2012 02:11PM BeckySharp wrote:

Hi all--Glad to hear everyone stretching a little bit more each day.  Nordy, tried fitnesspal on my iphone but could not find.  I have been tracking on loseit.com. 

Tina--hope you came through on the car ride.

 Like Kira, I could cut and paste.  MLD, Lebed, and 7 1/2 miles at the dam--16,200 steps.  MLD to go tonight.  No weights today.  It was hot today so I could  not wait to get home and get sweaty sleeve and gauntlet off. 

I will be traveling next week.  We will see if I can keep up with Carol.

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 16, 2012 02:58PM carol57 wrote:

Ah, Becky...you're the one to keep up with! I will have a very good mileage report later tonight, after finishing up what's shaping up to be a very big walking day.  But this trip is the exception.  Lots of places I travel to for work, I'm not in a good place to do outdoor walking (safety concerns, mostly) and treadmills do me in from boredom long before I would stop from fatigue. So I'm just loving being in a place where walking is safe and quite interesting, plus DH is with me so I have good company too.  Becky, I'm sure you will do your level best to stay active next week.  I know for sure that reporting in here makes a difference in each day's little decisions--for me the other day in three airports, I was definitely thinking of my evening report when I decided to walk the regular floor instead of walking on the moving sidewalk, just so I could get more steps in.

Off topic, has anyone ever visited Harvard's Peabody Museum and the Natural History Museum? We walked through Cambridge today and ducked in when it started raining.  They have a collection of flowers created as botanical-specimen models, made entirely of glass. The number of flower specimens in the collection is extensive, but the artistry and the fine detailing in glass is simply  jaw dropping.  Worth walking to!

Off to walk to dinner....

Carol 

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Mar 16, 2012 05:28PM carol57 wrote:

Finished my day of lots of walking: 20,090 steps and 9.5 miles.  Every inch was fun walking, so it doesn't count as 'exercise' at all!  I will relax for an hour or so and then end my day with MLD.

Carol 

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Mar 16, 2012 06:03PM kira wrote:

Carol, I've read about the Harvard museum, and I think my daughter has been there.

I wasn't good today--had doctor's appointment and hair cut, so I slacked off big time, but will get back on track. Gotta keep up with you guys.

Kira

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 16, 2012 06:36PM garnet131 wrote:

Oh, Tina, I hear you on the wrapping!  Cry  I struggled with it and was just starting to get proficient at it when my sleeve came in so I'm sure now that I haven't done it for months, it will be like starting over.  I read somewhere on here recently that everyone should wrap a few times a week to keep in practice.  I really see the wisdom of that, though not quite enough yet to make me do it. Though with air travel coming up in a month, think I need to refresh myself.

Well, I'm making my first appearance on this thread in hopes of increasing my exercise level. Not that I do nothing, but some of you guys have set the bar high! 

I normally start my day with a mile or two of Lesley Sansone In-home Walking, but overslept this morning.  That's been a bit of a problem the past month because I now have to leave for work an hour earlier due to company crack-down on flexible schedules, meaning I have to get up earlier to get the exercise in so I'm not quite as regular as I used to be. When I get up on time, my minimum daily requirement is a mile right after I brush my teeth and I try for 2 or 3 if time allows.

Wednesday night I have tap dancing, Thursday night, the yoga for BC survivors, and sometimes early Zumba on Saturday. Been wanting to get back to weights, but have to figure out a routine and start small--probably with 1 lb and see what happens with my arm.  It was exercising that set off this whole LE back last July.

I haven't been very good with the MLD. My therapist said to do it 2-3 times a week, but when my arm's not bothering me, I haven't been doing that. Need to get more faithful with it and see what kind of difference it makes..

Keep up the great work, ladies!  Now that I've checked in, hope I'll be more active and feel the benefits.

Garnet

Garnet Dx 3/7/1995, Left, 2cm, Stage IIA, 19/23 nodes, ER+, HER2+ Surgery 3/18/1995 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 5/6/1995 AC + T (Taxol) Hormonal Therapy 10/14/1995 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/3/2017, Stage IV, metastasized to bone/lungs, ER+/PR+ Hormonal Therapy 10/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Mar 16, 2012 06:49PM carol57 wrote:

Garnet, all I can say is that your exercise schedule is really fabulous and quite ambitious, so put yourself right on top of that high bar.  

And I simply LOVE Leslie Sansone DVDs, and when home, that's my exercise of choice.  When it's stinkin' hot out, I want to be indoors, and her approach lets me do just that without resorting to one of the gerbil machines at home or in the gym.  I also like it because it moves so many muscles.  When I walk long distances, I tend to develop a backache after 40 minutes or so, but the Sansone 'walking' has such much of knees up, legs up, and arm movement, that I avoid the repetitiveness and limited range of motion from regular speedy walking--and that's what I think gives me a dull back ache when I walk. 

Tap dancing, now that's impressive, because it requires you to be fit AND coordinated.  Counts me out!

Carol 

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