GRRRRRRRRR I HATE LE..........
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duckyb1: you are truly blessed with all your children and grandkids...Yes I know wildwood is definitely not the same as it was 20 years ago..Neither is Long Beach Island...but alas progress...PHOOEY
I lost my husband at age 54. I am now 56...six months after he passed, I got wonderful BC....It has been a long hard journey but I feel the worst is behind me. of course having LE threw a whole damper on things. but....3 days from now I fly to jamaica with 6 good friends to forget sadness...and to just have fun... Somehow I know I will have a drink in my hand all day!!!
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Melanie_Ann - You GO, girl! You should totally do the inservice. I really am apalled at the ignorance of those who treat breast cancer: the onocologist, the surgeons ... how they don't #1, acknowledge #2, know how to treat it, #3, their reluctance in referring to those who might be able to help us, #4 their general blase attitude towards LE.
That's awesome about your arm!
Your attitude is great and I so hope you do offer an inservice, although don't be surprised if you encounter some hostility because they're so ignorant. You inspire me! xoxo
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njbhw..........................be careful of your arm.............I don't want to be an alarmist, but if what you have is LE, the flying could be a problem...........Most people with LE wear a compression sleeve when they fly..................Not even sure you have it, but I wanted to give you a head up in case you do........................since its 3 days from now, I'm ot sure what you can do, but possibly you could check with one of your Dr's. They do have sleeves in Medical Supply Stores that are compression sleeves that are not custom made.........you can be sized right there.........just a head up.
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njbhw............I read back ..............you do have LE, so I'm sure you know about the flying and your arm.........................someone else had asked me a question, and I didn't realize it wasn't you...........sorry, but then again more information is better then none...........enjoy your trip...............
my husband was 57 when he passed away from Pancreatic cancer...............
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Hello, my swell friends! I have been popping in and out of BCO regularly but not posting quite as often. I have been feeling much better since my deconstruction surgery, and it's interesting to have my life back after living with chronic pain for the past two years. I'm still not sure where I was or what I want to do! I am allowing my body and mind time to heal, but my heart is so much lighter at this point. :-)
After my surgery in April, my LE eventually returned to it's original state, and at times it is even better. I have found new compression tanks and tees that work with my new chest, and they are more comfortable to wear without the implants. My insurance approved, but I am still waiting to receive my Solaris night vest. I haven't been doing my PAL home workout consistently, just little bits here and there, but I am using my arms more for daily tasks and have noticed an improvement in strength. Coincidentally, this past week both my husband and a close friend remarked that my arms are looking more toned.
Most importantly, I do think removing my implants has helped my LE. I am alternately wearing and not wearing my compression garments based on how I'm feeling. July has been quite hot in the Phila area, however, this is the best summer I have had since I first developed LE.
My latest excitement was that I survived a major cat scratch to my right arm (node and truncal LE side) without any issues. A cat outside our living room door got our indoor cat worked up, and when I lightly touched her, she freaked out and attacked my arm. She was beside herself, totally out of character, and kind of confused once she realized what she had done. Anyway, I immediately inspected the wound and noticed it was somewhat of a puncture, which is never good. I washed and washed the wound, and once the skin had softened somewhat, I removed the thin upper layer of skin so it was no longer a puncture. I kept running water over it and even made sure it continued to bleed and hopefully clear out any bacteria from my kitty's claw. Once I was satisfied it was as clean as possible, I applied neosporin and covered with a bandaid. I monitored, washed and applied neosporin religiously for the next three days, and it has healed well. Meow!0 -
Actually they were going to put me in the trial but I was still sub-clinical at the time...
OK news time!!!!
Saw BOTH BS and MD LE on Monday.
BS was sympathetic to my breast swelling.... he actually was pretty frank with me and said that during my surgery there were other nodes affected besides the ones that were dissected. I had reduction with the lumpectomy.
He says in spite of LE I did the right thing, that I was so large he was concerned I was going to get orange peel skin LE. He thinks that my breast may still get better on it's own, and that I may still be reacting to rads. He was happy to see my arm was doing better.
LE MD.
OK I actually managed to injure my LE arm on the coat hook of a toilet at the doctors office!!!
The good news....my measurements were better than ever...if I heard right only .5 difference between arms on one measurement....the others were the same....(I kind of think she meant 1.5)
The bad news only lost 2 lbs since last visit.....meaning a total of 6 since January. I really thought it was more...and even went out and bought smaller clothes...go figure.
Still she said obviously what ever I am doing is working( for LE not diet...she thinks I should see a diet doctor)
So Yea!
I worry I will jinx myself, but I know it's important to let others know that treatment can work. So I have pushed myself from stage two to sub-clinical I think.
She did note I have a little hand swelling, but it was a very hot day and I had a long walk from the subway earlier.
Have a great week all y all
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hey swell gals, i read a lot of the time, but haven't been in a social mood lately... i did pool ex. with my LE therapist, and she says NO to the garments in pool; the chlorine will deteriorate them, and, most imp..the pool gives the compression by itself.she actually wants me in the pool here more: just can't do it, till we get this hypo-thyroid under control.. it does help, a lot. for excersize, and the le......just MHO....3jays
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Melanie--Yes, you go girl! One change at a time with one person at a time is progress. I met another lady with LE at my therapy center. We have the same cancer team at a cancer center where we had our surgery, radiation, meds, etc. We are going to get together and see what we can do to try to get our cancer center to be more proactive on LE prevention. Our therapist said she would be happy to present any info.
All--I think I get it. No garments in the pool!
Cookie--happy to hear of your forward progress too. I am with you in the weight battle. I have managed to lose 20 lbs since surgery in Feb. Hard road. It is getting easier now that I can exercise more on my treadmill. I am battling it with tamox also. We may need to organize an LE weight watchers.
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Yea..I start tamoxifen on Monday. I'm worried about the weight gain. I lost about 15 pounds after surgery and through chemo but have put it right back on. I'll join your weight watchers...lol.
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I am ten pages behind but barging to the end of the line.
Because I have great, amazing news, that has NOTHING to do with LE -- except that a year ago all of you helped me keep my sanity.......
Today I received news that I won a national award for my latest picture book project..... the one that took me five years to create the illustrations from fabric as quilts (yes, the one where the quilts were all lost, but then were found)..... the one where last summer I couldn't even lift my heavy/quilt iron to make the final quilts.
Anyhow. The book has been done for 8 months, but today it received the national award. You swell sisterhood deserve to be a part of the celebration. You each contributed to my mental health in so many ways a year ago!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Here's the link to my blog: http://www.rainbowswithinreach.blogspot.com/
If you could leave a comment on the blog itself -- that would be a huge help in my blogging analytics, tracking of visitors yada yada.
Here's what the award looks like, for those of you in a hurry:
so the moral to the story?
I think I can, I think I can, I think I can...............
baby steps when necessary
listen to those with insight
eat the brownies......................
believe
hope!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
[the book is based on a song I wrote right after 9-11 for children, so the timing of the award is perfect -- to shine a little light on this project, as we approach the 10th anniversary next month]
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faithandfifty-A big congratulations to you. I am a former educator of preschool and elementary special needs children and you are contributing to them artistically and musically. Keep up all that you do. I am happy it is being recognized. Becky
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Brava, F&F!!! Definitely a SHINY moment!
Love the video of the signed version of the song -- so joyful! That's an amazingly taxing job you've done getting the word out about your books. Whew! Entirely inspiring. In fact, we should all do something chocolate today to celebrate!Hugs!
Binney0 -
Faith, what wonderful news! Boy, is it good to celebrate such a wonderful success!
Bask in the glow, because you deserve it.
Kira
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Hi Everyone- Just got diagnosed with LE. I did not have enough fun with chemo, rad., and herceptin I guess this had to be thrown in too. Chemo and rad okay. The Herceptin was the worst. Now this. I am going to get fitted with a sleeve tomorrow. I kept telling the onc. that my arm and leg was swelling up and of course not when I was at the appointment. So today I went for a 40 minute walk before appt. The onc. looks at my arm and said yeah it is swollen. Hard to hold your tongue with that response. It is funny in the info they give you about LE about maintaining your weight!!!!!! HAHA I have gained 35-40lbs. with the steroids and chemo. Every time I exercise I swell up!!! I am hoping the sleeve will help. I can't wait to fit into my cloths again. I feel for everyone of you that had to explain why your arm was swollen. At least now I have a medical term for it. Big whoop!! I have not read all 78 pages on this forum yet, but will try to catch up. Best of luck to everyone.
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chelemybelle - I'm so sorry about the LE. It's a huge slap in the face with what we've already gone through. I too had the same thing happen to me ... when I FINALLY got in to the the LE therapist ... my fingers were 'normal' ... looked better than they had in weeks! She finally did see them eventually all swelled up ... but I felt like a fool at first.
I, like you, everytime I exercise I swell up. For me, walking is the worst. I've been working out with a trainer since January and it's better than it was ... but I absolutely cannot do any exercise, anything, without a glove [edited to say AND] sleeve.
A great resource is the www.StepUp-SpeakOut.org site ... there is all kinds of helpful info that some of the ladies on this site put together. If you haven't checked it out, do! It's invaluable for all the information on there.
[[[[[hugs]]]]]] to you. If you haven't found a LE therapist yet, use the tabs on the above website to help you find a good one. They're invaluable and will show the tools you need to help manage the LE. xo
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chelemmy bell: try to get a referral to an Le therapist asp.. it will speed your journey.. i learned the hard way, and now, am doing much better. it owkrs!!
wishing you all well..............3jays
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FAITH!!!!!!!!!!!!!!!!!
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Thanks so much, Team GRRRRRRR for the words of affirmation.
In yesterday's blog post, I reflected on this project, perseverence, the swell sisters and brownies. As always it's a great help, if you can post to the blog, thanks for those of you who did!
Here's yesterday's link and then I officially will step out of the spot light of my 15 seconds of fame: http://rainbowswithinreach.blogspot.com/2011/08/indie-award-reflections.html
Here's one of the photos for those in a hurry. It is my tribute and appreciation for everyone here and the persevernce we all need:
MUCHO appreciation to everyone in this boat, but especially to those who take such an active role in supporting and educating the newbies in our midst. Your insight and kindness, coupled with the dedication to answering all of our questions is a blessing beyond measure.
Thank you is hardly sufficient, but know just how grateful I am.
xx00xx00xx00xx00xx
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Thanks to everyone for the words of support, wisdom and advice. Arm really sore today, must have slept on it wrong. Got fitted for the sleeve and GLOVE today. Cried on the way home and thought of having a pity party for myself. I am so MAD!!!!!! Like most of you I stayed positive through the chemo and rad. and did what I was suppose to do. Now because of surgury or rad. I have to take this on too. Okay enough of the pity party.
I am greatful these forums exits. I too find great support and comfort knowing I am not the only one going though this desease. Thanks Dawne-Hope I will be checking the web-site suggested. Thanks 3jays I will search for LE therapist. My onc. has suggested physio-therapy, but they,(nurse and doctors) scrambled around just to find some literature on LE for me to take home. I got online as soon as I got home. I am not confident of their referral. I have started on page one on this forum and am now up to page six. I have had some good laughs though the tears. I will continue to read through everything. Thanks again everyone.
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Michele - I think LE hits most of us that way. We're so brave during surgeries and active treatment, then BOOM! Just when we think we're getting our lives back, we're hit with this.
And most of us are pretty much blindsided by this whole LE thing because our medical providers cling to the belief that LE is rare or non-existant (the "none of MY patients ever gets LE" syndrome), so no one ever prepared us, educated us on prevention, or otherwise even mentioned the word "lymphedema" to us.
I didn't cry when I was told the biopsy showed cancer, and never cried throughout surgeries and chemo and baldness, but I cried like a baby when I was first dx with LE in 2009, and had a MAJOR pity party when I was dx with truncal LE this February.
Once you get with a good LE therapist and begin to get educated about self-care and management, it gives you a sense of control and you do feel better. Kind of like when we're first dx with b/c - those first few weeks are the worst emotionally. But once you meet with doctors and get a "game plan" in place, you feel better. LE is the same way.
Hang in there, and by the way, brownies are the perfect accompanyment for that pity party!!!
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Michele,
There's such a learning curve with LE, and there's so much grieving as well.
Here are some places to get started:
1) How to find a therapist
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
2) Treatment of LE
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
Also the position papers from the National Lymphedema Network
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
And self-care videos from the Northwest Lymphedema Center--watch them in segments, I found them very helpful in the early days
http://www.nwlymphedemacenter.org/
Here's an overview, from one therapist's perspective,
It's linked on the second paragraph of the stepupspeakout treatment page.
Or you can download the pdf from this page
http://www.srmconline.com/Rehabilitation/Pages/Lymphedema.aspx
There's loads more info, but best not to overwhelm you.
This is managable, and we're here to help--JoAnn Rovig--the woman on the Northwest Lymphedema Videos, says that when you get control of your LE, you get your power back.
I got my LE early, but it scared and upset and ticked off the heck out of me, and I floundered a lot to find good care, and the women on these boards showed me the way.
Kira
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Thanks NatsFan and Kira. I was on line most of the day yesterday and found a LE therapist in my area (Surrey, B.C. Canada). I found her on the StepUp-Speakout.org site. I am awaiting a call back from her office. Thanks for all the info everyone. No more pity party for me, I am taking the bull by the horns and getting my life back. I have watched some of the videos and they are quite informative, more than I got from my onc. office. Thank God for this forum or I would be still floundering on the internet highway. NatsFan- the brownies sound good, going to have to find a gluten free recipe so I can join you all, just in case the pity party feeling comes back.
Hugs to everyone.
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Pssst! Chelemybelle! Look here
:http://allrecipes.com/Recipe/ghirardelli-fudgy-gluten-free-brownies/detail.aspx
,
Binney0 -
Binney, beat me to it, Michele, there was a recipe on this forum for gluten free brownies for Passover by Leah_S and my daughter, who has celiac, is a big fan:
Don't worry, I got out my Passover recipes and here's the brownies:
1 cup oil, 4 eggs , 2 cups sugar, 1 cup cocoa, 1/2 cup potato starch, 1 tsp. vanilla. Beat all ingredients together well. Pour into greased 9X13 pan; bake at 350 degrees 1/2 hr - 45 min.
I have given up counting how many of these I make during Passover. If you know someone who can't tolerate gluten this is great for them. Enjoy!
Pity parties are always an option--this stuff is hard, and we need to vent sometimes.
Kira
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hi all...just got back from a fun, exciting, exhausting weekend. It was a professional conference, and I kind of wanted to see if I could get through it without wearing a sleeve in public. (I wore it in my room and juxta fit at night. )
I was able to get through parts of three days until it started showing up...I had back up outfits...to try to hide a sleeve under, though honestly, now that I have my real 20/30 sleeves I can not go gloveless the way I did with my 15/21 sleeve.
I did skip the parties with dancing late at night, that seemed like it would have been pushing my luck.
Anyhow, this makes me think I may be able to go to my conference in Sept., though I am still worried about flying and Louisiana weather.
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just going by, reading..thanks for the recipes, gals..love anything ghiradeli, and gluten free is a wonder, Mur, DH also has celiac.. 3jays
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We are finally home from the beach. My arm is not to bad but I had chest pain when I got home. I went to get ready for bed and no wonder my chest was hurting. My bra was cutting into my back with a huge bulge behind the arm in the dog ear area. I guess I will be wearing my compression tank tomorrow. uggggggggggg Now I wishes I would have had that milkshake I so wanted. May do it anyway tomorrow.
How do you get that area down? It has never been this bad. Hoping it comes down on it own.
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Kitty, I posted some Jovipak videos with foam inserts for the chest wall--they looked interesting and helpful.
I see that area swollen a lot in my patients, and they tell me the MLD is to the inguinals.
Cookie--you can do it! Go for the conference.
Kira
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Kitty, phooey!
if you don't have someone helping you, a (new, clean) paint roller can help you reach the area effectively. I'm planning to order one of those pads on the video, the wrap-around variety with the downward directional stitching. Looks good to me too.Lebed helps with that too -- the first section of the video. And of course stay hydrated, deep breathing, not overdoing with that arm for awhile.
Let us know how it goes! Be well,
Binney0 -
You should never wear a sleeve without a guantlet or a glove!!! your hand can blow up and you will have bigger problems!!! Please do not let what people think about the sleeve stop you !!! I wear my juxta sleeve and guantlet all day every day no one even notices that much. It makes my arm feel so much better.
Please be careful or you will have bigger problems!!!
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