Charleston Bound, part 2

AnneW · May 2011

Liz, you're on the right path to nipping this in the bud, hopefully. Tina's advice was great. A regular PT could really cause you harm.

I had mild swelling once after rads and when I hiked Mt. Whitney. The altitude, too-thin gloves, and trekking poles got the best of my sysem. Fortunately, I'd been eval'd by a LE specialist right after my node removal (2 levels) and had a sleeve, knew MLD techniques.

Since then, I have had no issues. That was 9 years ago. I wear gloves to garden, and tend to any cuts or hangnails immediately. It could still hit me.

Nordy is very active with her LE. You may want to PM her.

EileenKaye1 · May 2011

I see an OT at Memorial Hospital in New York.

Was advised to try nites. It worked for me. Was shown special exercises to open the node passages in the shoulder, arm and hand area.

At my gym--LA Sports-in New York--a garment would not work.

I am in the medical field. I know that the latex gloves--cause of my hand issues.

I can tell that my issues are not increased by my gym workout.

I attended a lymphedema group learn session at Memorial Hospital--and they advised the exercise is helpful--but not to use heavy weights. I do anyway--because I use a trainer--and

he prefers heavy weightlifting. I have definitely--not had a problem from the gym.

My lymphedema is barely noticable--even to me. No discomfort.

33 lymph nodes--all negative.

You could see what works for you. Eileen

nowords · May 2011

I was 18 months out from surgery and started a strength training program with an educated trainer (Masters Degree in Rehab and Sports Training)...I wore my sleeve and told him when I thought that the weights were too much .... he said to trust him, the sleeve could make it worse and he knew what he was doing....I went from at risk to lymphedema after 4 months....I wear a compression sleeve and glove during the day and a night garment now. Use caution. It sucks to deal with this.

kimber3006 · May 2011

As of 5:45 this afternoon, I am drain free - woohoo!

brendaclee3 · May 2011

Ann and Liz, I'd never thought about LE, but whenever I work in my garden, I have a strange pain that goes from the top of my hand up and around to my shoulder and my hand seems to ache and swell a little. I can stop it by holding my arm in the air and literally pushing the fluids down toward my shoulder. It's on the arm where I had lymph nodes removed. Geez, I never even thought that it could be a sign of Lymphodema. It only happens when I do strenuous work with my right hand. I've also noticed I've lost a LOAD of strength in that arm and hand. I never had physical therapy after my mastectomy 12 years ago so I'm totally out of shape. I'm 5'4" and weigh 130 lbs, so I'm not heavy, but I realize I'm terribly out of shape and need to tone my muscles.You've opened my eyes to a potential problem. Liz, I'm so sorry you are having this problem, but it sounds like you are on top of the issue and will find the best professionals to help you before it gets out of hand.

Susan-tic-tock tic-tock. You won't believe how fast the time will fly and you'll be heading for Charleston. I'll be there in a little over a week. I can't believe it. Everything I've read here and in Shirley Trainor-Thomas' little book has really prepared me. You can get a copy of her little book from Dr. Kline's office. I'm afraid, but excited, too.

All you gals, I totally agree with you all about your feelings on bathing suits. I will be able to wear a real bathing suit and some little sun dresses this summer. Even with the prosthesis, I was terribly lopsided and that thing was hot. I will be excited to lose it once and for all.

heatherbless · May 2011

HI LADIES: I HOPE YOU ARE ALL DOING WELL. I DONT CHECK IN AS MUCH AFTER HAVING STAGE 1 AND 2 DONE IN CHARLESTON--BUT I LOVE THE CITY. I HD STAGE 3 DONE IN NOLA AND AM VERY HAPPY. I WISH ALL OF YOU THE BEST!

LOVE, HEATHER

Anonymous · May 2011

Kim, yay!!! So glad you are drain free!!! I know you must feel great. Congrats!

jacee · May 2011

Heather, it's terrific to hear how pleased you are with your results. May this be the end of your LONG journey of recon! Bless you girl!!

Tina- drain free at last!! I had one drain 7 weeks and was so tired of dragging it around. Now life will become much more normal.

Liz, still thinking of you often, and hoping your LE becomes a thing of the past, soon. I know it truly never goes away, but praying it becomes manageable and not the main focus.

Upcoming surgery gals, how exciting this time is for you!! You won't regret it!!!

bennetts1 · May 2011

Heather...glad you are finally at peace with your reconstruction.

Kim...you have reached the point to where you will start to feel so much better...NO DRAINS!!! That is Wonderful!!!

Brenda...know you are counting down the days!

Liz, think about you daily...have you seen a PT yet? Hope everything is going well!

jacee · May 2011

oops, meant Kim,not Tina

SAMayoFL · May 2011

Hey ladies, has anyone heard from MsSherryinFL? I hope she is well and that all tests came back clear!

Jeskachi, can you please add me to the list - Stage 1 August 3 with Drs. Kline and Craige. Bi-lateral delayed DIEP.

Thank you,

Susan

AnneW · May 2011

I know from FaceBook that Sherry is busy with school. Haven't heard about her medical stuff, though.

Del11 · May 2011

So, with every surgery I buy myself something I wanted, as a kind of reward (or motivation, or good luck charm). Sometimes jewelry, sometimes a DVD set (like, a whole series--Gilmore Girls, Xena, Buffy, Star Trek Next Gen, etc.).

For a long time I've been looking for a mermaid something... probably a charm or necklace... but haven't had any luck finding something I liked. This weekend, however, I found the perfect thing:

By the end of this I'll have had 2 surgeries in Charleston, 1-2 in Chicago and 1 (very important) one in NOLA, but Charleston doesn't really have an iconic image (palm tree maybe?). And the NOLA docs embody everything I'm grateful for in this process, and Dr. Marga's one of them now. So the fleur de lis seemed appropriate, and with the mermaid coin it's perfect!

Just wanted to share, I thought you girls would appreciate it.

AnneW · May 2011

I LOVE that!! Where did you get the mermaid charm? I collect them, and use them in my necklaces sometimes! I get great ones from Green Girl Studios, but that coin thingie rocks!!

The Charleston Palm Tree is a cool symbol, and everyone recognizes New Orleans by the fleur-de lis.

SAMayoFL · May 2011

Jeskachi, I love that!!! How awesome!

Susan

Journey · May 2011

Love it too!

Del11 · May 2011

Thanks all! Anne: I got it on etsy. I think the artist makes the charms herself, I know the fleur de lis is cast from a wax stamp. Her shop is called RockLove.

AnneW · May 2011

Thanks. I'm going to check out her store. I love etsy!

Del11 · May 2011

For those of you who had to request medical leave from work... how much notice did you give? I did this once before, for my first stage 1, and gave them a ton of notice. 4 months I think. It didn't stop them from 1)failing at handling my work when I was out, and 2)blaming the problems on me after I got back. So, since advance notice didn't make a difference in what happened while I was out, and since I think they may be a bit resentful of me taking *another* 6-week leave, I'd like to give them the minimum amount of notice that would be professionally responsible. We're at 3 months out now. I'm thinking 2 months notice. Any recs? (btw, I work in a web design group at a university, non-managerial)

kimber3006 · May 2011

I am feeling so much better with the drain out. It turns out, that was what was aggravating that muscle. I've been dancing and jumping around like a fool just because it feels so good to move without pain!

Jeskachi - I love those charms - what a cool idea! Have you ever seen the "Charleston bracelets"? They have the palm trees, sand dollars, the horse-drawn carriages (from the tours downtown), and I think some have little houses from Rainbow Row (the street with all the various pastel colored houses over toward the Battery). I can't remember what else.

I think a 2 month notice is perfect. It's not so far out as to seem irrelevant at the moment, but still plenty of time to schedule around while you're gone.

I'm still feeling bad that I have to be out of work again for my 1B. Please tell me stage 2 doesn't require much down time. I know I've seen some of you post that it's several weeks before you feel back to your normal self, but surely it's nothing compared to stage 1?

SAMayoFL · May 2011

Kimber, looking back at the dates did you have a drain in from April 4 - May 14? The thought of that puts me into a full blown panic attack!!!!! Where was the tube? After my mastectomy, I had a drain tube right on my bra line for almost 4 weeks. The last week to ten days, the tube was clogged and leaking through the outside. My doctor and PA tried to unclog it unsuccessfully. At that point, I still had not had my port put in so they scheduled my port surgery and put another drain tube in which I wore for about another week. I had such a bad time with that stinking tube. When I was finally drain free I ran around and did a happy dance too. I am happy you got it out! Gosh, the thought of having a tube for that long is almost enough to make me chicken out!

I hope you are doing well.

Susan

kimber3006 · May 2011

Susan - Once I got down to one drain, it wouldn't have been that bad at all if it hadn't been irritating those muscles inside. I got the one in my chest out before I left the hospital, the other hip after about 2 weeks, I think, and then went almost 6 with the last one. It comes out of your hip, right where the seam meets the waistband in bikini style panties. I'm really short waisted, so maybe that was why it bothered me inside so much?

SAMayoFL · May 2011

OMG, I am in panic mode this morning. I can't even think about having a drain tube fore 6 more weeks. I am going to go practice some deep breathing! OK, one more question. After all you have endured, would you do it again?

Susan

Del11 · May 2011

Susan--with DIEP you probably won't have them that long. GAP/Hip drains tend to stay in longer. I'm having a stacked DIEP in August and Dr. M thinks I won't have drains for more than a couple of weeks (although I think she may just be trying to give me something to look forward to . I had one drain for 7 weeks with my SGAP. You get used to it, don't worry about it. Just remember that the more fluid that drains out the less likely you are to have a seroma. Drains are a good thing.

LizR · May 2011

Susan: It really is not that bad and SO worth it!!!! When you are in the healing mode, you think it may never end - but really, it does just FLY by and becomes such a distant memory. I waited 5 years - because I really thought I could make do with the prosthetic - but then realized that I was very self conscious (really missed the breast mound at the top of my shirts when I bent over) and just not happy with the uni-boob look anymore. Yes, I have a lot of scars but just the fact that I can jump out of bed - and not have to strap on that heavy bra - that alone makes it worthwhile. I also got a new body out of the deal (dropped 2+ pant sizes plus my saddlebags due to the SGAP) - so it really has changed my life. The downside for me: I am still in Spanx (maybe forever?), I still get occassional slight swelling in my outer hip where I had a seroma, the SPAP skin flap (I think the tush has much whiter skin than the tummy) and my tush is a little too flat! I would do it again in a HEARTBEAT! Liz

LizR · May 2011

Jeskachi: I also love those charms - how perfect for you!!! 2 months - even 6 weeks - should be more than enough notice. I think that is about how much notice I provided for my stage 1. (My company uses an outside agency to verify all of the details - short term disability is a big privacy issue for my company (big corporation) - they never knew the details, just that it was an approved leave).

Kim: Hurray for you!!! Sounds like you are doing so much better with all of the drains gone. Stage 2 is definitely so much easier - I was able to work from home probably a week out of surgery and then returned to the office at about 2-3 weeks after surgery (though could have gone back sooner).

See the PT tomorrow. Still have slight swelling in my arm; will let you know what she says! Liz

SAMayoFL · May 2011

Liz, thanks so much for your encouragement. I really do appreciate it. I am wondering too if you sunbathed topless or maybe went to a tanning bed do you think your skin would begin to match? Please don't think I am a perv or am saying you should do that I was just wondering if the flap skin would be able to tan after all it has been through. I am glad you are going to a PT tomorrow. I am not sure if we even have anyone in our area that can help with LE. I hope you get good news!

Jeskachi, thanks for that reassurance!

Susan

Snobird · May 2011

I don't know why the skin wouldn't react like skin anywhere else on your body it is still skin. I sat out in the sun the other day and my skin got tan (flap skin included) I did have SPF 30 lotion on as I have 1 radiated breast area where there is still some original skin left.

Anonymous · May 2011

Kim! Good for you! I am so glad to hear you are feeling better.

On Tuesday I was six weeks post-surgery, and Ashley said all weight and exercise restrictions were lifted! Going to start exercising slowly because of my LE. My LE therapist will probably get the ball rolling with some strength training. She's with the Univ. of Pennsylvania and familiar with the LE and weight lifting study (PAL study). In the past she referred me to one of the trainers who participated in the study. The trainer came to my house and took me through the PAL home protocol. Not quite ready for that yet, but I'm going to get there! At least now I don't have to baby the repaired pectoral muscles. I have already noticed the stretched skin and muscle have shrunk a little. Yay! I am continuing to feel better and better each day!! You know, I knew I was in a lot of pain, but you really don't realize how much once you start feeling well again! I think my body had become used to it to some degree. Thank goodness for Dr. Massey!!!

Tina

brendaclee3 · May 2011

H Susan,

Don't panic. In my opinion, sometimes these problems with drains, infections, can be caused by surgeons, hospital staff that aren't on the ball. Dr. Kline personally trained his staff and only uses his hand-picked team. I will tell you that when I had my second attempt at implants by another doctor years ago, my body started rejecting the implant on one side and got infected. I ended up in the emergency room. My ps was called and he rushed to the hospital and put me on an IV drip. I went home a few hours later and never had another problem. If you chicken out now, you'll always be admiring other womens' cleavages and saying, "Dang, I should have gone through with it." I have my DIEP just 5 days from now and I'm really nervous. I might take a xanax the day before the surgery to calm down a little. Was anyone else really nervous before your surgery? How did you handle it?

Charleston Bound, part 2

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