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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 07:32PM

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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May 30, 2018 10:44PM hugz4u wrote:

varg. pics would be cool only if your safe. Sounds like you might be distracted with insurance companies on the rental. U might get a bit of exercise running back and forthfrom insurance agencies. Take some deep breath in this stressful time.

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May 31, 2018 01:38PM Vargadoll wrote:

I tried to load a few picture last night and It just wasn't happening!

Try again! The's are 4 unit buildings. I will post some old pictures so you get idea of how deep the water got.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 31, 2018 01:47PM hugz4u wrote:

OH MY! It’s shocking. Thx. Wish you less stress on days to come.

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May 31, 2018 07:11PM 2FUN wrote:

stay safe Varga!

Hormonal Therapy Surgery
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May 31, 2018 08:34PM TaRenee wrote:

Yikes Varga! Glad everyone got out safely but what a mess. We haven’t had wide spread flooding but we have had some localized. Nothing like that tho. Stay safe

Dx 7/29/2017, IDC, Left, 2cm, Stage IIA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 9/14/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 9/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/29/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 31, 2018 10:28PM MinusTwo wrote:

Varga - so sorry. Looks like Hurricane Harvey in Houston last September. Hope you can get things back in shape with a minimum of stress.


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 1, 2018 09:16PM - edited Jun 1, 2018 09:16PM by hugz4u

Sweated up a storm at gym. Speaking of storm. This May we broke records here with sun and no rain. Rain storm tonight. Guess what? My arm has decided to act strange. Yup it barometric pressure i figure. Weird aches.

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Jun 1, 2018 10:07PM MinusTwo wrote:

Tomorrow is the first day of water aerobics for the season. I'm still sore from weeding Wednesday and then Silver Sneakers the next day.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 2, 2018 12:42AM hugz4u wrote:

Minus. Wow that’s s lot of activity packed into a few days! I’m hoping the water aerobics is outside. That’s would be so awesome. We are all about indoor pools here. Just gotta keep moving. Only sat in car for an hour. On my feet rest of the day. Planted green beans and four zucchini today. Watered,weeded and yadda yadda in the garden.

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Jun 2, 2018 07:02AM MinusTwo wrote:

Yes, the water aerobics is outside in our community pool. We're a small neighborhood - 180 homes - and it's a small pool. We didn't think we'd get enough participation to pay a teacher this year after holding classes for 9 years. Now I'm worried that we'll have too many people show up to have enough room for exercises. Outside is lovely except for mother nature. People are already bitching about the sun for an hour on Saturdays at 10am and we haven't even started. And of course we get shut down for thunder storms at least a couple times a month for the evening classes.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 2, 2018 10:47PM hugz4u wrote:

Outside sounds delightful.

Last year I got a landsend one piece suit that has arm sleeves attached and its great for outdoor water aerobics when I travel and find an outdoor pool. I slap on a baseball cap and only need lotion on my face. The suit is sun protective. Not outdoor pool nearby me. Dang

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Jun 3, 2018 08:46PM 2FUN wrote:

any ideas about compression stocking, or socks? I had pelvic lymph nodes removed when I had hysterectomy for endometrial cancer, and I have pretty aggressive leg edema. Any good catalogs to look into?

Hormonal Therapy Surgery
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Jun 3, 2018 10:16PM - edited Jun 3, 2018 10:22PM by Binney4

2Fun, I have LE in one leg and use BrightLifeDirect for stockings. I like the Allegro Essential cotton stockings. If you can wait a bit they usually have a sale on them throughout July, but even without a sale their prices are competitive. The customer service has been excellent as well.

https://www.brightlifedirect.com

Please let us know what you come up with!

Hugs,
Binney


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Jun 4, 2018 08:38PM TaRenee wrote:

I don’t know how good they are, but I just ordered some Pro Compression socks. They had a buy 2 get 3 free deal and I decided to try them. I haven’t gotten them yet, but when I do I’ll let you know how I like them. Side note: they are not cheap

Dx 7/29/2017, IDC, Left, 2cm, Stage IIA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 9/14/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 9/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/29/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 5, 2018 04:14AM - edited Jun 5, 2018 04:14AM by hugz4u

Ok all. I was able to run 6 mph for three whole minutes. This is a personal new goal for my old short legs. Ps. My family has banned me from running due to spraining ankles. Don't fink on e!

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Jun 7, 2018 09:42PM Vargadoll wrote:

Today I got to swim in the pool! The water was 82 degrees it felt cool at first but the longer I was in it the better it felt. I was in for over an hour swimming and walking both round and round! The first of many more full days to come so excited!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 8, 2018 03:55AM - edited Jun 8, 2018 03:55AM by hugz4u

Varga. That sounds so inviting. Enjoy! Slogged it out at gym yesterday and will be their againafter my shut eye. Nite all

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Jun 8, 2018 08:25AM MinusTwo wrote:

This is interesting - LE diagnosis by machine

https://medicalxpress.com/news/2018-06-machine-lym...


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 8, 2018 09:16AM Warrior2018 wrote:

Hi Minus- my BS told me at my last visit that she is getting one of those machines this month. But it’ll cost about $250 per visit and she’s not sure if insurance will cover it, and she recommended having it done every 3 months. 😧 Yikes.

The good thing is that it can catch LE before the side effects even start. Very interesting. Thank you for the link.




AKA- Paleo Unicorn 🦄😊 Dx 3/14/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- (FISH) Surgery 4/25/2018 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right)
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Jun 14, 2018 09:43AM amygil81 wrote:

Hugz, sorry, been offline with a new LE flare. Hadn't had any for a while, until you mentioned it, then Bam, the next day I got one. Next time, how about you write about me winning the lottery, OK?

I probably overdid it crutching through the park, but it was such a nice day, and the flowers were out, and I didn't want to stop. Now PT and MLD every few days, bandages 23/7, the works. Sigh.

Can I ask what your mother has that affects her mobility?

Osteosarcoma in left leg at age 13. DCIS in left breast at 33. IDC recurrence in left chest wall at 42. Dx 12/2000, DCIS, Left, 1cm, Stage 0, 0/3 nodes, ER-/PR- Surgery 12/9/2000 Lymph node removal: Sentinel; Mastectomy: Left Dx 12/2009, IDC, Left, 1cm, Stage IIIB, 3/10 nodes Surgery 12/17/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 1/10/2010 CMF Chemotherapy 5/30/2010 Taxol (paclitaxel) Radiation Therapy 10/30/2010 External: Lymph nodes, Chest wall
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Jul 9, 2018 12:24PM glennie19 wrote:

Gosh, I have been gone a while!! the pool was closed at the gym and just reopened last week,, so I am getting back into it! My favorite instructor left though,, but I will figure something out!

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Jul 9, 2018 10:57PM TaRenee wrote:

Hey there ladies! My compression socks from ProCompression are wonderful. I love them. I found them through FB, so if you are on there look them up. I think they are running another buy 2 get 3 free sale. $100 for 5 pair. Totally worth it to me

Dx 7/29/2017, IDC, Left, 2cm, Stage IIA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 9/14/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 9/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/29/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 11, 2018 06:14PM kae_md99 wrote:

ladies,anybody know the CPT code for the lymphedema compression machine? i think it starts with an L?

kae, 1-10-17, IDC,2.5 cm, right,er,pr,her2 (+),grade 2;DCIS, left, er,per(+),grade 2; 2-17-17- Taxotere, Carboplatin ; 2-17-17- Herceptin , Perjeta; july 14,2017,BMX,TE's,SNB,0/3;8/2017,Zoladex;1/26/2018,Arimidex
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Jul 13, 2018 07:27PM Laural wrote:

This is from Aetna's insurance manual.

A segmented pneumatic compressor (E0651, E0652) is a device which has multiple outflow ports on the compressor which lead to distinct segments on the appliance which inflate sequentially. A segmented device without calibrated gradient pressure (E0651) is one in which either (a) the same pressure is present in each segment or (b) there is a predetermined pressure gradient in successive segments but no ability to individually set or adjust pressures in each of several segments. In an E0651 device the pressure is usually set by a single control on the distal segment. A segmented device with calibrated gradient pressure (E0652) is characterized by a manual control on at least three outflow ports which can deliver an individually determined pressure to each segmental unit. The fact that the tubing and/or appliance are capable of achieving a pressure gradient does not classify the compressor as E0652 because this is not a calibrated gradient pressure.

Segmental gradient pressure pneumatic appliances (E0671-E0673) are appliances/sleeves which are used with a non-segmented pneumatic compressor (E0650) but which achieve a pressure gradient through the design of the tubing and/or air chambers.

Pneumatic pumps can consist either of static uni-compartmental pumps where an equal amount of pressure is applied throughout the edematous limb, or a sequential pump which essentially attempts to "wring out" the edema by graded compression from distal to proximal. Due to the short cycles of pressure, higher pressures can be applied compared to the static pumps. Pressures higher than the systolic blood pressure are avoided; pressures up to 80 to 90 mm Hg are typical. At this point sequential pumps (such as the Lymphapress or the Wright linear sequential pump) appear to be more commonly used than static pumps. The Lymphapress device is composed of a series of overlapping cells that apply a sequential pattern of compression moving distally to proximally along the affected limb. Using this strategy, higher levels of pressure can be applied compared to other uni-compartmental devices which apply the same degree of pressure along the entire limb. The Lymphapress device seems to be effective in acutely decreasing lymphedema, and many patients have purchased this device for home use.

Newer, advanced pneumatic compression devices with additional features that the more "traditional" type of pumps do not offer have been developed. A two-stage multichamber programmable pneumatic compression device operates in two separate phases. These devices are proposed to be based on the principles of manual lymph drainage (treat the proximal areas first, which is theorized to prepare the distal areas for drainage). The first phase is a "preparatory" phase, followed by the treatment or drainage phase, which utilizes light variable pressure to drain the fluid/ blood from the distal treatment areas. The second phase may be controlled by multiple programmable options. Examples of this type of pump include, but may not be limited to, the Flexitouch or LymphaPress Optimal.

The Flexitouch Device (Tactile Systems Technology, Minneapolis, MN) is a 2-phase lymph preparation and drainage therapy device. The device consists of an electronic controller unit and garments which are worn on the trunk and upper and lower affected extremities and connected to the controller unit by tubing harnesses. The garment consists of 32 inflatable chambers that sequentially inflate and deflate at 1 to 3 second intervals, according to 1 of the 13 pre-programmed treatment patterns selected. Chamber pressure and treatment times can be adjusted. The manufacturer states that device's sequential action evacuates lymph from the trunk and extremities and drains it into the venous system. The garments are made from stretch material and are fitted with Velcro enclosures, so custom fitting of garments is not required. There are no published studies comparing the effectiveness of this 2-phase lymph preparation and drainage therapy device to standard segmented pneumatic compression devices.

The ACTitouch Adaptive Compression therapy system is another more recently developed pump device. It combines intermittent pneumatic compression with a sustained gradient pressure. It may be used when stationary or when ambulating (walking).

Dx 9/18/11; Stage 1 IDC on left, 1.2 cm. Grade 2, 0/2 nodes positive; Stage 1 ILC on right, 1 cm. Grade 2, 0/13 nodes positive; Acute leukemia as young adult and secondary MDS ever since. Through it all, God is faithful.
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Jul 15, 2018 02:16PM - edited Jul 15, 2018 02:23PM by Jackpot

hi everyone, just jumping on here as a newly dx lymphedema lady, ive got it in my hand mainly and mildly in my arm whic has i ncreased a couple of percent over the last few weeks, ive been dry brushing my arm three times daily and i have just started using kinesiology tape on my arm and compression on my hand....i have a couple of questions that hopefully you ladies can help me with.....firstly can i dry brush over kinesiology tape? Will it be as effective? Tried to google this but not much information out there,

I'm going to start swimming soon as ive been told its good for lymphedema has any ladies tried this and found it effective? Also same question for exercise

A low carb diet is recommended for lymphedema any success stories out there for this

Also considering LVA surgery i know this is not a common surgery but have any ladies had this done or enquired about it and have any information on it

Lastly any other tips for arm/hand lymphedema would be very much appreciated

Thanks in advance for any inform


Regards

Gill

Dx 7/5/2013, IDC, Left, 3cm, Stage IIA, Grade 3, 1/13 nodes, ER-/PR-, HER2- Surgery 8/1/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Chemotherapy 9/4/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Radiation Therapy 1/13/2014 Breast
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Jul 15, 2018 08:47PM PreludeSing wrote:

LVA surgery - bypass surgery - Have you done it?

Hi Gill - so sorry to hear about your lymphoedema...you may find the above thread helpful- just search for it. a few ladies have done LVA and have shared their results...


Dx 6/2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/24 nodes, ER+/PR+, HER2- Surgery 6/6/2017 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 6/26/2017 AC + T (Taxol) Radiation Therapy 11/27/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin)
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Jul 17, 2018 05:08PM Laural wrote:

Hi Gill,

While at the Cancer Treatment Center of America, I had an evaluation with Dr. Liu who is doing LVA and other surgeries. As most of my swelling is in my upper arm, and manageable with compression and manual lymph drainage, he did not recommend surgery. He noted that for the bypass surgery it works best from the elbow on down to the hand as the lymph and capillary drainage are more top surface there, so easier to get to surgically. He also does node transplants, but again only recommended for more extreme lymphedema. As the nodes are transplanted from the groin area typically, you can then end up with lymphedema in the leg. He did note that advancements are being made regularly, so to keep in touch with my medical staff. For now, I am managing well using the compression, along with a LymphPress occasionally. Hope this helps.

Dx 9/18/11; Stage 1 IDC on left, 1.2 cm. Grade 2, 0/2 nodes positive; Stage 1 ILC on right, 1 cm. Grade 2, 0/13 nodes positive; Acute leukemia as young adult and secondary MDS ever since. Through it all, God is faithful.
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Jul 24, 2018 11:08AM Binney4 wrote:

Bumping for Diane.

And also to add a rah-rah to everyone who's plowing forward with their exercise goals. For me, summer is a downer (well, hey, I live in the desert, after all, and just stepping outside the door takes courage--and a potholder to open the car door-- 117F today). So to anybody else having heat and sheer inertia issues--JOIN ME BACK ON THE EXERCISE WAGON! I'm back on the Lebed exercise routine, for a start, and doing a daily half hour of house-walking (back and forth between kitchen and bedrooms--not exactly stimulating, but it gives me mental time to organize my day--well, as organized as it can be anyway.)

What are y'all doing?

And a shout-out to our sisters-of-swell on the other side of the planet--enjoy the winter weather for us!

ONWARD!
Binney

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Jul 24, 2018 11:27AM - edited Jul 24, 2018 11:27AM by ohio4me

Okay - here I am.

Seven years out. Need to DIET and EXERCISE. I had those words as much as LE. But, the years have gone by, much has happened, life goes on...... LE and extra pounds persist.

Today is a new day - I need encouragement, motivation, and I don't know what else. I am on AI's so that doesn't help but I don't want to be a side effect of my medications!

I have goals:

1) Retire - done, I am at a place where my days are my own unless someone in the family needs something, then I run (and always will).

2) Lose weight - I have only gained.I know all the tools to make it happen, I am a professional dieter. No, I have dieted many times.

3) Increase mobility - my joints are old (64 years pushing 65). Docs say I need knee replacements in a few years. I think I can prove them wrong. Yes, I have arthritis but I firmly believe I can decrease the side effects by increasing strength in my legs and losing weight.

Okay - those are my goals. I don't have a bucket list. Already did those things before retirement.

I wanna be a better me. HELP!

Today - pull out the LEBED and get my arm happy. Get out the chair and move!

Dx 3/29/2011, ILC, 5cm, Stage IIIC, Grade 2, 14/15 nodes, ER+/PR+, HER2- Surgery 7/11/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 8/29/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/23/2012 Surgery 7/23/2012 Prophylactic mastectomy: Left
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Jul 24, 2018 12:49PM Binney4 wrote:

Yes! You go! Today is all we've got, and it's the only thing we have to worry about changing.

Onward!
Binney

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