Charleston Bound, part 2

MartyJ

Cascader - Thank you for the ROTFLMAO kind of giggle!  What a great story.  Those prosthesis are the devil and definitely have minds of their own.  Hmmmm, I guess my implants did too as they seemed to shift and lift instead of fluff and drop.  So glad they are gone!

Catie2013

Cascader. Holy cow! LOL

Catie2013

Okay, a defining moment for sure, Cascader!!!! That would surely do it! Maybe another thread - 'mishaps with prosthetics or fillers' should be in order? Could give some laughs!!!



My mishap (might have posted this earlier?? not sure) was/is after losing a flap (due to hematoma 3 days out) I had one SGAP flap doing very nicely and one flat mx side and the foamy stuff that came with our cammies as filler I had to take some of the stuffing out of the cammie filler to match the flap. We had a Supper Club dinner with approx 5 other couples to attend and I had rehearsed my husband on giving me a signal when the foam filler started to travel (I was still in the bra given us at the hospital and wearing it 24/7) and I had experienced the foam filler traveling around the surgical bra when I tried to wear it at home. DH said fine, he would give me a signal. We sat at the table for a good 3 hours and left after dinner. I felt so proud of myself for basically only moving around for the cocktail hour and then sitting and knowing it hadn't moved!!! As we made our exit I confirmed with DH (who sat across from me the whole dinner) that it was in pretty good to not have moved at all! He commented, "Oh, it moved, right to the center!" I looked down and I had a UNI boob - one big, wide, uniboob right in the middle off my chest!!!!



Didn't call Dr. K as already in the works by then, but sure did go out and buy some bras with pockets in them for the prothesis I also bought!!!! Heavy and uncomfortable, but sure didn't give me a uni -in the middle- boob again!!!



Cascader, you must have awesome daughters that the only thing they said was nice going!!!! And, great friends to share the laughter with! LOL still!!!

Cherrie

I was in Menards buying deck stain just last week. As I was talking to the employee (lady), my left drain fell from my waistband and was showing through out my shorts. She didn't seem to notice. I pretended to have a major itch every time she was reading something off the paint cans. I finally worked it up to crotch area and it wouldn't budge. It looked like I had male parts there. I had to keep the cart right in front of me. It was my first time wandering out and driving by myself. When I got home I pinned it to the waistband.



Maggie- thinking of you. Can't wait to hear how you are doing.

Catie2013

Cherrie - LOL - male parts how funny!

ketch

We are just back from rainy Charleston. Next time Charleston gets in a drought, I'm going to visit to end it. The 3 week in Feb/Mar that I stayed were the wettest on record, then a record rainfall while I was there earlier this week! It did not matter much since the hubby I & went together. He's still recuping from the shingles & does not feel well. He's fine as long as he is not doing anything,sowe spent a great deal of timein the room & then we would go eat. We didn't really do anything else, but did get ot the beach twice. I was glad withthe situation like it was that I didn't pop for the beachfront $200 rooms. What I did do was book a 4 star on hotwire, turned out to the the Charleston Marina Resort. It was nice and clean which was the main thing. It would be a great place tobeif youdid not have a car because they run a trolley into town, Shem Creek & Sullivans Island and a few other places. So those of you flying in without a car, this would be a good option for you.

I will not be joining you girls in July. I do believe Dr K would have done it in July but while I was there, the truncal lymphedema really showed out. Not sure if the driving aggravated it or what, but it was the worst it has been. Dr K said there was no way he could operate with that much edema. It was so bad he got Dr. Baron to come look at it, they pulled my masectomy records and both decided it was so bad that it could not be lymphedema. They thought maybe I had a blood clot from the removed port, so I went to get a ct scan. I told Tommy that I would be surprised if that showed anything other than the lymphedema. It did not. Mine is truncal and I found out the LNT is only good for arms....so I'm pretty screwed in that respect.

The plan now is to go for stage 2 in September with fat grafting in December. Dr. Kline was fully aware of insurance aspects. I already have dates set up. I will continue to go to the PT for the lymphedema. Dr Kline & Baron saw it at its worst...I am just glad that Tommy had his pain pills with him because this was the most painful it'd ever been,even my neck was swollen. Between Tommy & myslef, we should have qualified for a handicap parking while there! Theride home was uneventfuland the lymphedema did not kick up with the drive home. So I guess it was just my luck.

PinkHeart

Ketch,



I feel for you on the LE. I think I told you I had the LNT surgery at stage 2. I started with truncal LE that later went to arm. Dr K was witness to that.



Truncal LE sucks (actually all LE does!). I think its harder to treat and alot of docs dont recognize.

I have a LymphoPress machine that also has a vest to add for truncal. Do you wear compression camis? I had to use swell spots for the truncal areas too.



Did you have lymph node dissection for positive nodes?



So did Dr Baron do your BMX or was that done somewhere else? I really liked him. He assisted in my LNT surgery.



I hope your PT-CLT gets you relief soon! And that Tommy's shingles take a hike.

ketch

I had the node dissection, but none were postive, thankfully. Dr. Baron did my mx. I do wear a compression cami. It helps & I feel better, but doesn't quite hit all my areas.. I am ordering the swell spots for under my arms. It is really bad there--both arms. My arms are usually ok & the LE starts about where my sleeve ends. And, bcs of that I do not wear the sleeve much. The PT wanted me to see Dr K befoer ordering a machine, so I am guessing that is my next step. The LE was miserable while in Chas.

Catie2013

Aww ketch so very sorry to hear about your LE and truncal problems! And the rain. I would truly hope it subsides after you are home? I have to say I'm very much in the dark about IF it subsides or flares up on occasions or how those conditions arise - but either way so very sorry you had to go through it even for a moment'. Pink - same goes for you!

Cherrie

Ketch- so sorry that anyone has to put up with this. So hope you find relief and help for this.

cascader

Ketch so sorry to hear about your LE problems. I too hope that you can find relief. I am thinking that maybe it was good for the docs to see it at it's worst and that your ride home was uneventful. It is usually the other way around, we call the cotor with some horrible thing and by the time you see them it is gone! September will be here before you know it and you will be right on schedule with your insurance.

Cherrie, funny story about your drains. I always just used big saftey pins and pinned to what ever I was wearing. I tried the small purse, the camis with the pouches but always reverted back to the basic safety pins.

Catie, here's to no more uni boob!

I am just a few days past three weeks and my nipple is hanging in there. Still black and freakish looking but small parts of the dead tissue is starting to fall off. Ick. I have a love hate relationship with the plastic nipple protector dome and have bought out the stores trying to find a tape that will actually stick and won't pull off my skin with it. Ouch. Last night I got up in the middle of the night and something felt a little off. The dome had slipped while I was sleeping and was pressing down on my newly created nip, it was kind of folded over poor thing,  and I was a little worried. This morning it perked right back up and looks just fine. Wishing my stitches would dissolve but am thinking it might be time to get out the cuticle scissors, they drive me crazy. Thankfully my blue mood has passed, funny stories on here helped ! I still do not feel like I have alot of energy but hope to take my doggy for a hike this afternoon before the rain comes, she just looks up at me with her sad face saying "let's go" .She is a good motivator.

Memorial weekend and holy moly there are a lot of people in town. Let the tourist season begin!

Have a good one everybody!

Catie2013

Cascader, have you tried paper tape? I had to put gauze to cover my radiated side that had the owie last year and paper tape was the best, didn't leave a black mark and stayed on. They also used some heavy duty cotton type tape to cover me while in HBOT, but never had a package just the roll (they gave it to me finally so we didn't have to do that every time I went). But glad it was okay! And, glad your 'blues' are gone too!



I've had a few of the 'blue days' lately too, and I painted my finger nails blue - DH finally noticed (did it on Thursday) and said - why did you paint your nails blue? I said, because I was feeling blue, so decided that I'd paint my fingernails blue to get me out of it! I'm letting the finger and toe nails be the blue part of me!!! Sometimes it works, sometimes not!



Hugs

PinkHeart

Hi all, hope you're having a great holiday weekend. I thought Dr K's picture of message written in sand was so cute on facebook.



Cascader, this last surgery with one drain I found the safety pin to be much more simple. However, my first surgery I had six drains so had them all in cami pouches in front and looked preggers.



For my July surgery I'm booked at Comfort Suites-IOP for $63 night. It's not to great from reviews, but I need back up in case I dont get in Hope Lodge. I will also be staying a bit afterward with friend in Summerville. And, I'm also considering a one bedroom at Sandpiper Village retirement community for $40 night. Cascade, did you have a one bedroom? Are they separate cottages?



Hope all of you are healing well physically and emotionally from your surgeries. Take care

cascader

Pink, I had a 2 bed/2 bath at Sandpiper, I don't think they are actually separate cottages but sort of feel like it. Maybe they are,not sure. Mine actually had a courtyard and 2 separate small private patios with a bench to sit outside. There are also little public spaces in the shade that noone uses to read etc. They are all a little different but I would stay there again. It is a little run down but not bad, everything you need and very friendly and helpful. Re the comfort suites, I am sure it will be fine, as long as it is clean you really don't need much except for the do n

cascader

Oops, sorry . Meant to say except for thedin

cascader

Darn it!

cascader

Ok, will try again. Sorry everyone. Hoping the Hope lodge works out. Oh, and I am glad you like my beach art

Catie, yes tried the paper tape and it just does not stick well. I will call Chris on Tues and ask her if she can send some of the wider cotton stretchy tape. That worked well but the roll they sent me home with is gone. Love the blue nails idea, thanks for the inspiration!

Goodnight y'all, typing on this phone is driving me crazy!

PinkHeart

Cascader,



LOL. I "liked" your beach art! Thought Dr K wrote it. But he obviously liked it, too.

WaveWhisperer

Ladies, I had all my breast surgery and treatment at MUSC, not Roper, but I'm happy to give advice on restaurants, hotels, etc in Charleston and Mount Pleasant. Sorry I'm late to this thread.

Catie2013

Wave whisper : I love your screen name as well as your city! So glad for more restaurant info!



How about some moderate priced but very good food? My daughter and kids will be my caregivers and on my dime - so when we come again in July will need a couple not so expensive but good food type places to go. We will be at Homewood Suites in Mt Pleasant.



Thanks much



Catie

cascader

Just a quick note: there is an interesting discussion going on in another thread called Cancer in DIEP? Have my onco appt tomorrow, will put it on my list to discuss.

Catie2013

Cascader. scary stuff. I guess we have to make sure we are followed by a MO AND a BS that specializes in BC!!!! I really like Dr. Baron, even though he is 7 hours away from my house. And, intend to go back to him for a while at least.



This BC thing is so confusing sometimes to stay up on. But I truly am glad I am on this site as would be heck to read about these things in the newspaper or internet without the ability to read back stories, past posts, or discuss with other breast - friends!



Wondering if there is a cyst/tumor in the flap if it has a channel to get somewhere else in your body (the ducts are not there, so wouldn't it just stay in the flap and not be mets??)



Let us know what your MO says if possible?

PinkHeart

WaveWhisperer,



Welcome to this site for Charleston natural breast recon BC survivors! So good to hear from and support EVERYONE. It seems that most of us have had our surgeries at East Cooper Medical Center with Drs. Kline and Craigie, but really would love to hear from more patients having DIEP, SGAP, PAP, LNT- Lymph Node Transfers, etc. anywhere in Charleston.



How have you been doing since your treatments and surgeries?



Definitely appreciate your local input on restaurants, hotels, and things to do!

cascader

I seemed to forget that I was supposed to let you know my take on local restaurants..I do think however that our local friends Marty and WaveWhisperer may do a better job! I would like to say I am a bit hesitant sometimes in commenting as I am in the business and know from personal experience what one persons thinks of one particular experience is not necessarily a fair evaluation. So with that said....We actually ate most all of our meals at the Homewood, breakfast 7 days a week, and most all dinners mon-thurs. I really think they do a great job there and we saved lots of money by doing this, and my main reason for choosing this hotel. Just too easy and convenient. When we did venture out to eat, which is one of my fav things to do btw, we were always looking to be on the water, so I found that most all the places we went had fun/nice atmospheres but the food was just ok, which is pretty typical imo. Tourist places aren't always know for the best food.  We hit most all the places at Shem Creek and  I think I liked the Waters Edge the best, really good happy hour prices on food and drinks.  I like to sit downstairs in the bar area. Red's Ice house was the best for an ice cold beer ,to just sit in the sun and watch the boats. Have been to the Boathouse several times, enjoy the atmosphere. Most fun place was Poe's Tavern on Sullivans Island. We did have a few meals in the city , wanted to go to SNOB but never made it. Found a nice little place nearby to have a glass of wine sitting outside to people watch, not sure of name, but was a place known for desserts. I do like Cru Cafe, had a good Asian Chicken Salad. Also had a good quick shrimp cocktail down by the market at Aw Shucks. For nicer places in past visits we have tried the infamous Husk, but enjoyed 82Queen much more. Around the Homewood, of course Crave is steps away, don't think I ordered the right thing, as others meals were much better. Liked Thai Basil alot and got several green smoothies at Tasi.  Also went to Calders pub, my husband likes this place, typical sports bar, good burgers and wings. Wanted to go to Opal and Magnolias down the road...maybe next time. oh, really great breakfast at Charleston Cafe on Johhny Dodds and Anna Knapp.

But what I must tell you is about the BEST consignment shop ever, right there in Seaside farms, I think it is called Sunny's ? All labeled items in excellent shape if not new with original tags. I bought a brand new still had tags($182) Tommy Bahama sundress for $40. I also bought another dress from Black House White Market for $15. Could have spent all day in that place. Nice owner and she really does a excellent job. Highly recommend.

Now I am getting hungry. I do look forward to returning someday just for fun when I actually have an appetite and not moving around so slow

WaveWhisperer

Catie, MP has many great restaurants -- not the famous ones that Charleston has, but really good ones. One of my favorites is Page's Okra Grill, on Coleman Boulevard. Coleman runs parallel to Johnnie Dodds, which is Route 17. The Okra Grill is open for breakfast, lunch and dinner. Great Southern cooking. The parking lot is always packed. Also excellent are Five Loaves, on Route 17 (lunch ad dinner); LongPoint Grille, on Long Pointe Road( L&D) ; Graze and Eurasia, both in the Whole Foods shopping center between 17 and Coleman at Houston Northcutt; Boulevard Diner, also on Coleman (BL&D); Juanita Greenbergs (Mexican, on Coleman); Mustard Seed (on Chuck Dawley); Shem Creek Grill (seafood).

Among the better chains are  Five Brothers (hamburgers) Moe's, Sticky Fingers (local barbecue) and PF Chang's.

Most MP restaurants close on Sundays. But the good thing is that MP is relatively small and you can get anywhere in about 10 minutes. If you have a GPS, it's easy to get around.

I've been doing fine since my surgery, chemo and radiation. Had lumpectomy, so no reconstruction. I'm feeling the effects of Arimidex but love having hair again.

I'm happy to help fellow Sisters. If you'd rather PM me, that's fine, too. I've eaten at almost all the restaurants in MP and stayed at a few of the hotels, or had family staying there.  

Catie2013

Cascader I did get to SNOB (Slightly North of Broad) and to Magnolia. Both in Charleston - probably enjoyed Magnolia best - I have some allergies to work with and the chef went out of his way to make it a very nice and allergy free meal.



In July my daughter and family will be with me and although they are going to enjoy the beach - my SIL is a RN so I feel the tab will be on me (the inconvenience of taking their time, etc) so looking for pricing less than the $60.00 for lunch for 2 that both the above cost!



My DD and SIL both like Poes, even went back teice when he came up for a weekend when I was at IOP for the PAP in January. We also had Seafood from Sullivan's and tacos from a restaurant I can't remember the name of near Poe's.



But the reason for Homewood Suites IS the fact we can do Mon - Thurs without going out for dinner. So leaves only 3 nights to worry about and at least 1 of them I won't be with them! And kitchen in suite for lunches'



Soooo, what I need , from experience is good seafood moderately priced - think there is one at Shem Creek?



Cascader will have to check out the consignment store - think DD went into one for kids as we came expecting cold on January and it was WARM! I knew I should have paid more attention in Geography class - I thought Charleston was not as far South of Atlanta as it is - so a bit warmer at times!



Hugs



Cathie

MartyJ

Cathie-try The Wreck of the Richard and Charlene. It is on Shem Creek, but hidden so google for directions and menu. Very local seafood. Actually, Gilligans right near Homewood Suites is pretty good, fresh and local. Not too expensive.



Pane et Vino is new to Mt.P, but also down town. Quirky, but good. Kudzu bakery on Coleman is good. We always love our friend Sal Parco's restaurants, especially Mustard Seed and Long Point Grill. I also second lunch or dinner at Five Loaves. Burgers at Sesame are great. The Public House on Coleman has wonderful burgers, too.



The worst thing about living here is that it is a foodie city.

cascader

Marty, with the help of my phone GPS I did find the wreck of R and C , looked closed down with a bunch of feral looking cats sitting on deck and at door. Maybe they were just waiting for it to open for their dinner? Thought maybe since it was not shrimp season they were closed. Really wanted to go there after reading about it in Travel and Leisure.

Catie2013

My DD and SIL are foodies, ie Urban Spoon (think that's it) so want to give them some $ & $$ suggestions instead of $$$$$!!!🙆

LOL!



Marty living first in Chicago and now near Atlanta have been a foodie wanna be I think since birth! Going back to Chi in a few weeks to see some good friends for a mini reunion and will enjoy my old favorites so know nothing about the new foodie favorites!

Anonymous

Another option (not foodie-level but good with a nice view) is the restaurant at the marina at IOP.