Charleston Bound, part 2

I could walk up straight an unassisted for an extended time period of 1 week post surgery. I would not have wanted to haul luggage and definitely could not have lifted anything into the overhead bin. I easily tired after walking about for 20 minutes or so. I would suggest that you ship home any luggage via UPS or FED EX so you don't have to deal with it at the airport.

Linda, Snobird, and Bennetts~Thank you so much for responding to my post.  My sister will be with me for four days while I am in the hospital, then I will be moved to an extended care facility alone for 5 days. After that, I'm on my own to make it home. I haven't made my reservation for a flight yet, but will ask about the plane size. I called the United Airways reservation office, but the lady was less than warm and fuzzy.  I almost cried because I'm already nervous, so I just told her I'd call later, and I hung up...then cried.  I will heed your advice about shipping my luggage and trying to find a decent sized plane.  At times like this, I wish I had a big strong husband to help. I do have great sisters like you gals, though. Gail, at Dr. Kline's,  had been a God send.   Thank you!!  Brenda

Brenda, I am really sorry I haven't had a chance to sit down and really answer your email.  We are a person short in my office so I am doing two jobs.  Plus, I am seven weeks post chemo and my stamina is just not where I think it should be.  When I get home at night I just pile up and rest.

Girl, I think about you every single day.  I so wish I could be there with you!!  Unfortunately, I scheduled my surgery based on my work schedule.  August provides enough weeks that I think I can take off 4 full weeks.  I worry about you but I also know us women are some kind of tough.  I know you are going to do what has to be done and breeze through it all.  I will keep in touch with your sister and will post so everyone will know you are doing great.  Keep your chin up.  It is all going to work out!

Susan

Hi Susan~I'm sorry you are having to hold down the fort there, especially just being 7 weeks out of chemo.  Although my chemo was 12 years ago, I remember how fatigued I was.  It took me about one whole year to get back to my old self.  I had a farm then and I remember going to the barn one day to feed the goats.  I was so tired that I had to take a nap on the hay for a while until I could go back up to the house.  That is a nice memory actually.   You are so right...we women are real pioneers and can make it through tough times.  Maybe that's because we have each other. Be patient with your energy level.  This is the year for you to pamper yourself. ~Brenda

Brenda,  Wow, that extended stay facility sounds wonderful  Did Dr. Kline's office tell you about that?  What a nice thing to know and I am sure it is much needed for those that don't have the help.  Good for you.  Now, just to work out the  logistics for your trip home and you will be all set.  Will you have help once you get home?  You really won't need much in the way of clothes once you are out of the hospital  It will probably be warm in Charleston, so bring some loose elastic waist pants or shorts (light weight cotton), some loose tops that button or zip up the front if possible, so you don't have to lift your arms over your head.  The hospital will supply you with bras and hospital panties (they are very sexy).  don't be afraid to ask the nurses for extra.  Explain you will be at the extended care place by yourself and won't have anyone to launder them for you.  They are very accommodating.  Will you be at East Cooper?  Well, at least there won't be any males on your floor.  Please keep us updated as the time gets near and we will be waiting to see the post from Susan.    Best wishes.

What needs doing this time around, Joni? That's the time frame I'm looking to do nips, but would rather not go to Charleston. Much quicker to get to NOLA or SLC for me...

Going for nips and a little work on my left breast. Just needs a little lift done. Maybe some lipo, not sure. Dr. M will be in NOLA Nov & Dec. I think she has some openings the last week in Sept in Charleston. NOLA would be closer for me as well, but Charleston works better for insurance.

Wow, I've been trying to find the time to get on here and post for 2 days!  I went back into work all day yesterday and so far today, am feeling GREAT (no jinx!)!

Susan - Personally, I couldn't fit into my own panties for a few weeks - too swollen!  I came away with 3 of the bras.

Brenda - I was in the hospital for 6 days with my DIEP, but I had a second surgery on day 5 to close up a flap. Dr. M was worried it was going to swell too much and cause problems to close it with the first procedure. So that would be day 8 that I had to go in for a checkup with Dr.M. I was still on the pain meds and a complete zombie. I was definitely in no condition to be flying alone. I ditched the pain meds the next day and felt sooo much better in just a couple days (though I was at home and not being jostled around on a plane). I wonder now how much of my pain was coming from this injured groin muscle. Now that everything else is mostly healed and I've been able to isolate and identify that pain (thanks again, Anne!) it's slowly improving, too. I just needed to treat it like a strained muscle rather than post-surgical/incision pain. But anyway, the point of all that was that you might be able to handle things with just the muscle relaxer and ibuprofin by that point, but there's no way to tell until you're actually there, so you would have to plan for the worst, right?  I would recommend getting an elastic waist skirt for the trip home, that and a button front shirt.  I think it's much easier going to the restroom, especially a public restroom, in a skirt with this compression stuff.  Also, if you want, I can PM you my cell #.  I live a good hour from Mt. Pleasant, so I couldn't get there fast, but I would gladly help you with anything I could if you find yourself in a pinch after your sister leaves.

I have to say. Some friends have offered to take us to a condo in Gulf Shores Alabama for a week this summer. I am just tickled to wear a bathing suit this year....flat tummy and new breasts...I can hardly wait. This time last year I couldn't imagine ever being on the beach again. Thank you Dr. M for your mission of restoration!!!

Awwww Joni, I can so relate to that.  We live in Panama City Beach, FL.  95% of our recreation time is spent outside, mostly on the water.  This year has been painful for me.  I won't wear a bathing suit at all so I have been wearing a tank top and shorts with my mastectomy bra and prosthesis underneath.   I really didn't realize how lopsided I am, even with the prosthesis, until I saw my suntan lines.  Good grief.  Rather than having a symmetrical U it is way construed to the left side, which is my natural breast.  I am counting down the days until I have two real, jiggly, SYMMETRICAL breasts!!!! 

Susan

Joni - That's so great!  I can't wait to be there.  I'm still lopsided for time being, and I can't WAIT to be able to shop for clothes just because I like them, not just because they have coverage in the right places and disguise my chest.  I never achieved symmetrical with a prosthesis either.

Joni...excited for your surgery date!  I know you are excited...Dr. Marga will do what is best for you!  Isn't it great to be wearing a swimsuit????  Last year I could not even get in water because of my open incision!  Looking forward to going swimming this summer.  I have been looking at swimsuits, but will probably wait until after my surgery next month to buy one.  I am wandering what she will say about me being out of compression to go swimming...planning on some more lipo!

Kimber...WOW!  Back to work already!  That is wonderful that you are feeling good!  I know you are happy to have your first surgery behind you.  It really makes you feel so much better about yourself, and I know I was so glad to get rid of the heavy prosthesis I had to wear everyday...I hated that thing!!!!

Liz, I hate to hear you are having problems with your arm!  Hoping you get some answers from the PT.  I think it is a good idea to hold off until next year on your surgery.  This insurance can really get messed up!  I am a little nervous to see how my new insurance is going to pay this time around.  I have never had to pay a deductible, but this will be a first!  How long does it take to get a bill from the hospital and from Dr. Massey?  I have never had to pay because my insurance was GREAT!!!  I will probably reach my out of pocket max...I am glad Dr. Massey does not balance bill!!!!

I loved to wear summer dresses after my Stage 1 surgery.  The ones I had had elastic necklines and I just had to step into them and pull them up.  I know SteinMart, Marshalls, and Rosses has a good selection of dresses that would be perfect to wear post-Stage 1 right now!  They are good at hiding the drains too!!!  You do not have to worry about pants when going to the bathroom!  Hope everything works out Brenda.  We will be thinking about you and here for support when you need us!  Susan, when is your surgery, I cannot remember?  We need to get it posted!. 

Liz, I really urge you to take the time now to address these initial signs of lymphedema. Prompt attention and treatment will help keep the condition easier to manage and from developing further. Doctors know very little about LE because most have had very little training on the subject. Please don't let your primary convince you to delay getting the attention you need and deserve.

A good friend of mine just developed LE in her arm and has been having it treated asap. She has a therapist do manual lymphatic drainage exercises and is learning how to do on herself. She only has had to wear a compression sleeve and gauntlet, no wrapping. I think that is the difference between addressing early and waiting until it becomes much more swollen. You could ask the women on the LE forum to get confirmation about treating arm LE, as I have truncal LE.

My situation was allowed to progress because my PT didn't have adequate LE training and gave me exercises to do that actually aggravated my symptoms. It was only after I visited the LE forum that I got good info, found a new therapist and received the treatment I needed. I wish I had received manual lymphatic drainage and worn a compression garment when I first became aware of my symptoms. Perhaps my swelling would have gone back to a more normal baseline. My LE isn't bad, but it's not as good as it could be. Trust me. You never want it to be any worse than it is right now. As far as putting your life on hold - someone on the LE forum made the comment, "you can make the time now, or make the time for the rest of your life" . .  I know this sounds drastic and like I'm trying to scare you or make you worry unnecessarily, but I hope you do take this seriously and have addressed. We are heading into the summer months, which are notoriously unkind to people with LE. I grew up in central NJ not far from you and know that summers there are hot and humid. For good info on LE, risk management and treatment, check out this website several women from the LE forum developed. It is excellent:

http://www.stepup-speakout.org/ 

Oh, and if you told Dr. Massey you were having these symptoms, I know she would tell you to do the same thing. She is the one surgeon who knows her stuff about LE, which is why I went to her for surgery.

Please forgive me if I sound like a nag, but I'm just concerned. 

Everyone - thank you so much for your concern!!!!  It does stink and I hope it goes away - but I think Tina is correct.  I have been visiting the lymphedema threads and have some sense of what I might be up against - even if caught early.  My arm started really hurting last Thursday (after cleaning out the garage and some weeding!) - really bad pulling - what I have considered to be "cording" - where I see a taught line in my arm that pulls all the way down.   However, this was more painful than normal so I searched the lymphedema threads - and found that "stepup" website - which REALLY opened my eyes.  For the first time, I saw a diagram of exactly the pain I have been experiencing for years - a pulling from under my arm that wraps around the inside of my forearm, to the top of my hand - at the base of the thumb. I found that is not lymphedema but a risk factor.  However, by Saturday morning, I saw that the inside of my wrist had swollen and as the days went by, I developed additional swelling from the inside elbow to top of hand.

Yes, my primary is clueless (she thinks it is LE-related but sent me home to buy an ace bandage and wrap myself!  I had to call back for the script after speaking with the PT scheduler).  But I did post on the lymphedema thread & got a link to the lymphedema specialist referral sites - and have a call into a LANA trained PT - so I think I am on the right path.  I am hoping this is just a wake up call - and that I can get by with just a compression sleeve during exercise (which will be difficult enough for this very body self-concious person who exercises in public 5x week - including at the gym at my office where most folks have no idea that I even went through the big "C").   Plus I get hot so easy and can only wear sleeveless tops in the summer!!!  This will be interesting!    Will keep you posted!  Liz

Eileen, it's odd how you have been instructed to care for your LE. Is this what your therapist has told you to do? I have early stage LE in my upper arm, shoulder and back. I wear a sleeve and gauntlet to workout ALWAYS. I was told never to sleep in my sleeve. I don't need wrapping at night and am doing all I can to keep it that way.



Liz, I agree with Tina and I'm glad you are in your way to a qualified therapist. You will learn how to cope with the sleeve. And compression garments are all the rage in gyms now so you may consider getting yours ordered in a funky color to go with your workout gear. Sometimes brighter is better! Take care.