NOLA in September?
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Greetings
Two things. First, I have tried to describe this site to people, but words seem woefully inadequate to describe the range of issues and emotions that are openly dealt with, so I guess I just enjoy is and keep it to myself.
In Philadelphia there is an organization called Hosts for Hospitals that provides free lodging in people's homes for people who come to this area for medical help. Some stay with hosts for a few days, some for weeks and some for months. There is no charge. It is a true life saver for people who are already in the midst of life threatending diseases and struggling with medical bills, loss of work, etc,. There is a similar organization in Boston. At any rate, if anyone needs to come for care in Phila, please let me know. If we cannot put you up, we will put you in touch with people who can.
Margit
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I have a friend who has a friend that gives tours of New Orleans (aka The Crescent City, The Big Easy, or "The Gracious Lady"). She is not doing tours until spring but she gave me the name of a couple of tour guides if anyone is interested. They work through Friends of the Cabildo - ask for Harriet Robin or "Rosy" (a man). You can say you were recommended by Carol Sommers. The tours leave from the 1850 House, right on St. Anne in Jackson Square.
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Jenn, glad you're doing well! Don't even THINK of weighing yourself for at least two weeks!!
Anne
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Jenn, you are right. BC is a beast, and we will have to keep praying for your friend Alaina.
I have the one Ab drain -- wearing the tightest dominatrix compression garment I have. Still hovering around 30cc per day. UGH!!!! Does not yet seem to be drying up!!! UGH!!! The exit point is in the crease between my leg and my pubic bone, TERRIBLE SPOT!! UGH!!!! (Last time, the exited the abd drains on top of my pubic bone, MUCH BETTER!!).
OK, done complaining!!!
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Hi NOLA girls..
I just spent the last hour reading posts from where I left off a week ago... LOTS to read!! I was in Cincinnati helping my mom recover from her Mastectomy on Monday. She is 72, this is her 2nd time around (like me, a 2 timer) with bc. She has been incredibly strong and I'm proud of her. We don't have the final path report but she's doing great...
Anyway... my emotions went all over the place reading a week's worth of posts in here.. tears for Alaina even tho I don't know her... I find myself sad and mad as hell at this damn disease...I'm SICK of it already!!! I also found myself suddenly panicked when I read about the insurance problems with Nordy...truthfully the financial part of this scares me to death... if I get a denied claim letter on this surgery I will pass out... it has become painstakenly obvious that I simply cannot be reassured enough that I won't go bankrupt paying for my SGAP....it doesn't matter what anyone says to me or anything.. .I just worry........lol. Nordy... please keep us posted and let us know it was resolved! I also feel inspired by all of you and your good reports and hearing that you are all happy with your results. I am up for Stage 1 on 2/23 and I know once the new year is here.. time will suddenly speed up and I'll be on deck. I have lived with my totally flat chest for one year now.... I am eager to look down and see something.... but nervous as well....
I really appreciate your candid posts and encouragement for all of us newbies... thank you!!!
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holtbolt, just keep in mind that worrying isn't going to help one bit!! Relax, deep breaths, EGBOK....(everything's gonna be OK)!
Liz, Alaina and I are hoping to meet for lunch on January 7th. In the meantime, I am sending Alaina some goodies to remind her of how loved she is.
Jennifer, Alaina's recurrence is limited to bone only---no organ involvement. This is really good news, because the bone is easiest to treat. She said that the treatment for several spots is the same as it is for three, and she is anxious to begin fighting. While I know that Alaina is very scared, she also has strong faith in God's love for her, and she knows that she can live a very long life despite the recent bad news. In fact, on my way to NOLA for the first time, I met a lady at LAX with bone mets who'd been in and out of remission for over 17 years and she was so inspiring to me. She did chemo every so often but was living a happy life and had recently married a man she'd met on a cruise ship. She'd even teamed up with three other survivors and they'd written a book together about their journeys. Alaina has every reason to believe that she can survive this too, and I know she will fight it with every ounce of her being.
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Warrior!!!!!!!!!!!! Iam so sorry I left off your hubby in my pre-surgical wishes above! Praying all goes well.
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Thanks all! And I guess that's where we all draw our inspiration...in knowing every single minute is truly a gift, so treat them that way...................and it would be a DARN shame to waste this new body before the swelling goes down! LOL! There will be no weighing for a while, trust me.
So I sit here in my OWN comfy bed w/ my favorite backmax contour(Oh YES! I could sell this product!) w/ drain belt...and am almost havign dejavu.....BUTsheesh so much has happened! ...last time I had one this time 2 but it is OK! But Spring I hear ya....It is Oh so sensitive down there! esp under the dominatrix! My other goal is to retire the 'uniform'......It is a pair of Black adidas sweat pants w/ pink stripes size XL.....I cannot tell you how many times I wore those esp after stage 1 but they became waaaaay too common a throw it on item! Bought them as I finished rads beginning of last february. They were always a bit too big.....
Wow....soooo much in the last YEAR...and guess that was a big part of "Umm what just happened?...I'm really thru?" In sept it was "Did we just really do this?" BUt it's all GOOD!
Sandy you're right she's going to kick ass! Thanks for reminding me!
OK and I guess I just want to say.... it is just so nice how we are treated when we go there. We all know that. The author of the book at the Encourage mting was all about 'treating her like a princess'. I think that was the title. And I think I even told one of the nutrition ladies during stage one "I'm not sure I've ever been treated this well"....Gosh it is sad that sometimes it takes such bad stuff happening to make us remember that being treated well and celebrating 'femininity' does make us feel better. The only thing those adidas pants had going was the pink stripe!
So glad I did the christmas stuff before I left. Hope Mel is traveling safely.
More later- Hoping Kathy's husband's procedure went off as planned and had good results. They both need to rest relax and RECOVER before they start the next ENTIRELY new chapter!
goodnight!
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Did anyone see the article that just came out on CT Scans and cancer? They estimate that CT scans done in 2007 will cause 29,000 cancers and kill 15,000 people (and 2,000 excess breast cancers) from the scans done that year. Stephanie - Your doc is SO great to do an US instead of a follow-up CT scan. I am going to try and see if my doc will either do that or an MRI instead of the additional scan that he wants to do in May. Having already had 2 this year, I think I am already over-exposed...
Here is the link if anyone is interested...
http://news.yahoo.com/s/nm/20091214/hl_nm/us_cancer_radiation
Jenn - so glad you are home!
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Aha! There IS a cheat sheet! The top of the page! Duh! So do you gals print out the top of the page? Or do you scroll up and down as you write?
I wish I'd met Alaina when we were in New Orleans last. She sounds like an incredibly caring and giving lady. She'll have lots of prayers and positive thoughts sent her way as she fights against this terrorist that is breast cancer, even from those of us who've never met her. There's nothing quite like this sisterhood, is there?!
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Sandy Alaina is in my Prayers & thoughts also.
Minn - I scroll Up & down usually.
Good Luck to all the rest this week!
Dec 15 - Ccbaby, Stage 1 S-GAP, (Dr. S) NOLA.
Dec 15-20 - MelanieW, Stage 2 - NOLA
DEC 16 - Sassie, Stage 2 (Dr. D) NOLA
Dec 18 - WPLD - Stage 2 Hip flap (NOLA) Fairway Hospital.
My Right drain will not give up! It was at 45cc 10 days ago...It is still 90-130 each day! It will be 6 weeks for me on Thursday.
Things are looking better each day!
I tried on a top I bought 15 months ago when I had expanders- it looked wonderful then (Its dressey & was for the Holidays Last year) I never got to wear it because of my Symmastia after my exchange. So 15 months later & it just sits there. I tried it on yesterday & cried. it was great to see Cleavage again & have soft boobs- Which JIGGLE Finally!
I probably still cant wear the top this year for xmas as it is very fitted ...I pay give it a try for my Dads...As they all know about my surgery & drains & just tuck the think in my pants (boy that sounds funny)
Will see. its sleeveless & my arms look a million times worse then 15 months ago too : (
heck- Ill probably never wear it- LOL.Nordy- Im in the same boat as you...Well almost...I was approved 100% the day before surgery- Only to arrive home to 2 letters sating I was not approved...Posted after my surgery. Grrr. I dont even have an approvele on Paper..>Well remember I am approved for my Accidental Dental!
Im not even going to think about it yet.
All my claims just sit 'In Process'
Hopefully we can both get it worked out soon.
Holtbolt- Glad your Moms Surgery went good. I will hope for good Path results.
Try not to worry about the Insurance. Just black it out of your brain right now...I find that very easy to do for some reason- (cause I forget everything!) LOL
Pam
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Dejaboo - It was so great to hear that you can wear that top! Isn't it something how much we can all come to appreciate bouncing our breasts?! Wow, the simple pleasures! (BTW, Have you asked Dr. Massey about the drain output? I wonder how long before it starts to let up!)
Dejaboo & Nordy - Dejaboo has the right idea about the insurance, I think both of you should just stash the paperwork until after the holidays. It'll all get worked out eventually. Worry about it "tomorrow" (as a famous Southern belle once said..)
Ccbaby, MelanieW, Sassie, WPLD - GOOD LUCK!
PlainJane - I loved your posts.
Hotbolt - You're as emotional as I am!
Springtime - I love your new photo (I know it's been up for a while) but just wanted to say I also loved the old one - it always gave me a smile!
Sandy - How are the nips doing, girl?! For those of you who don't know, MomsDaughter also likes to go by her newest nickname, bestowed upon her by yours truly, and earned by her unflagging commitment to obtaining the most awesome reconstucted nipples in the world: "Nip Girl"
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Hi heroes!
I have read a lot here and learned more. I am scheduled for left MX with immediate recon at Omega Hospital in NOLA on 12/28. I just couldn't bring myself to go with a flap procedure despite my preconcieved objections to implants. My PS (Dr Ernest Chiu) was very open and comfortable with either for me though he indicated he might have difficulty getting the size right with a flap. TUG was the only possibility and I evidently don't have very much to work with. I'm only 34B and the left one is already the smaller one....plus I have never been in a hospital and am scared to death of this entire thing and just couldn't face more incisions, scars, longer hospital stay and lots of other things that were brought up. So I'm going TE with implant and what the heck, the PS says my body needs bigger so I'm going to get bigger. My DH says he takes the 6 Million Dollar Man approach...we can rebuild her; we can rebuild her better.
Dr Stolier is my surgeon, who I loved, and he's planning skin sparring as my stupid disease is too close to the nipple and I can't go that route, though he was very much for it if possible.
Anyway, I may be in the wrong place since I'm implant and not at the Center but I just wanted to .....I don't really know what I wanted. I'll be at Omega...12/27 for surgery the next day....I should be easy to find if you are there...I"ll be the terrified one with a death grip on whatever's convenient. Think of me, my heroes.....my DH says this group on this board is the most courageous band of warriors ever....may I survive and become you.
Deb
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Hi Friends!
My DH and I are back from the hospital! His procedure went really well. They fixed his afib through ablation and also a flutter, which he didn't know he had..dr said he threw that in for free! I said..Thank goodness it was Free Flutter Fix Day! lol Ken is doing better than me. I was at the hospital for 12 hrs yesterday for him. By the end of the day, I was a little Pillsbury dough boy walking around...Actually, it was more like that Marshmallow Monster from Ghostbusters! lol The swelling went down somewhat over night. I had to take pain pills so Ken drove home...we are two sorry cases right now! We are both laying in bed with laptops on us and watching TV. I feel a nap coming on! I am sorry I haven;t read all the blogs but I will shortly after my nap. I am praying for all those on DECK! woo hoo...I had the opportunity to chat w/Sassie (My Hometown Chic!) We live a couple miles apart! SMALL WORLD!
BIG NEWS HERE!!!!!!!!!!!!!!!!!! USA TODAY Newspaper is coming out tomorrow to take pics of me for an article on Tamoxifen and how the drug is metabolized!!! Yes, I did say TOMORROW...5 days post op! lmaooooo I am insane!!!! Springtime also talked to the reporters so I keeping my fingers crossed that she may be in it, too! But, its a great opportunity to be a VOICE for us warriors, no matter how much pain I have!! I think it will be published in the next week. Will keep you posted! He wanted to spend a few hours for a typical day but I laughed and said hubby and I will be laying in bed all day..fun!!
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Warrior - You have definitely earned your name! Both you AND you husband have! Thanks so much for doing the media thing - it's hard - but we all appreciate you sticking out your neck for the rest of us!
Mississippi queen - Of course you fit in here! I was at Omega for all my procedures - when Drs. D and S operated there. It's a fabulous facility and Dr. Stolier has worked a lot with the Center docs. Good luck!
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Sandy~what a beautiful post for Alaina. I hope you sent that to her.
Kathy~so glad you and hubby are home and doing well. You are going to be awesome in the article...no matter if you are only 5 days out! Why? Because you are a WARRIOR!!!
I finally have a minute to tell you about the hold the plane story. My BIL is an ex-Air Force civil engineer. He now is an electrician with the US Army Corps of Engineers. Because of his background, they send him to places in need. He spent 4 months in NOLA after Katrina.
Well, they asked him to go to Afghanistan earlier this year. He had been gone fof 7 months. They wanted him to stay a year, but my sister and his girls just couldn't take it any longer. He was originally due home on 12/12. Then they bumped it to Friday, then to Thursday 12/10.
When my sister told me he was flying home on Thursday, I was like "Really from where? What time? We fly home on Thursday!"
Sister: "From Denver. 10:30 at night."
Me: "No EFFING WAY! What airline?"
Sister: "United"
Me: "WE ARE ON THE SAME FLIGHT HOME!! How amazing is that!!"
Sister: "That's crap that you get to see him first!"
LOL! So my hubby and I were very excited to see him. Well, my sister calls me right before we board in NOLA in tears telling me that BIL's plane out of DC had mechanical problems and had just left and he was going to miss his flight home. She told me or Mike to fake seizure to delay the plane...LOL!
So we land in Denver and go to our gate and I go talk to the gal and the counter. She looks up Alex's flight and he is only 8 minutes behind schedule! I plead our case. Then Mike (Hubby) talks directly to the pilot's and we plead our case again.
They held the plane for him! It was so cool!!! He was SO grateful. I just burst into tears. I am such a sap. And then they bumped us up to first class! NICE!!!!
Although, it really showed me that people hear what they want to hear.We were specific that he was an Army Civillian stationed in Afghanistan with the Corp of Engineers. They announced a soldier coming home from Iraq. I clarified after the announcement with the flight attendant, because I didn't want them to be upset when he wans't in uniform or anything, but they were still happy to do it.
What an awesome Christmas present! It was definitely a gift from the Universe that we were on the same flight.
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Trishia,
Amazing story! And like so much else on this thread, it made me cry!
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Trisha, so glad they held the plane, he deserves it!! warms my heart. What a story! It's like a movie!!
Warrior!!!!!! I too was feeling like the Michilin Tire blob! I know what you mean! All that lipo with stuff injected. It took almost 2 weeks to get the swelling down for me, and I was walking and drinking water. I think some of us just "puff up" into marshmellow state easier than others!
Mississippi Queen - When the center docs were still at Nola, last Dec 2008, I had my BMX there, with Dr. Stollier! I had to lose one nipple too, but it is now BACK!!! Dr. D just recently rebuild it! ha!
Sandy, I broke down and bought a slew of that 3M Micropore paper tape stuff for my dozens and dozens of inches of incision lines. Got it cheap off the Web, as you said. I hate the feeling of it being wet on me, so may now (once it is here) use a new fresh piece each time. Did they tell you at the Center you could get it wet and keep it on? I guess I am a fuss.
Girls, this drainage hose between my leg and pubic bone, in the crease, is about to DRIVE ME BATZ!!!!! Ahhhhhhhhhhhhhhhhhhhhhck!!!!!
Spring.
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Hi Girls! Still fighting diahrhea, but getting better. Did found out that Herceptin will not delay Stage 2, so I am "tentatively" scheduled for stage 2 on my Birthday, May 7th!! I am so excited. Spring, get me on that list....lol Will feel better knowing it is there!! Getting some rest, luv to u all!!!
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Ginnie I am still on herceptin and going to NOLA in January. I will have 1 or 2 herceptin left once I return.
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Warrior that is great news! have been thinking of you two....no more flutters or fibs...that is a very good thing! So They haven't done the interview yet? I remember you talking about USA today at St Charles but... huh huh....there's a whole lot I don't remember but then again, we decided we were both hallucinating....or as my nurse Karen said "You were talkin.... can't remember the xpletive" But KNOW I was apologizing profusely for it. I know when they stopped the basal rate on the PCA things got better.
OK so marshmallows....hmmmmm.....I must admit I took off the ted hose when I got cozy in my bed last pm and woke up w/ near if not normal sized ankles. And thanks Spring for reminding me they shoot that stuff in too. I have been lazy because I didn't have a clean and dry dominatrix to wear so that is my excuse for not leaving the house today plus it's sort of cold here. But I'm set now and can't use that excuse. Water yes, but going for more.
Melanie texted me....she and her husband drove straight thru yesterday afternoon and it rained all the way...they are road warriors. Hope they get to golf before her surgery.
I'm thinking ibuprofen is helping and actually making 6 hours or more on lortab.....between naps. not a lot of drainage but then again I haven't moved too much today. I'm thinking tomorrow is going to be more active. Sheesh I so thought the walking around was the ticket sunday too but once again was probably too much too soon....ya know all around the french quarter, market, etc from the hotel and back. And My ankles were grapefruits that evening-hence the ted hose and propping that helped some. When I saw Dr. D monday am he said they should go down. It's just not a speedy overnight thing. THO...I'm most happy my ankles seem normal today. And the pain a bit better. Drains don't look terribly full probably because I've done so little all day!
Really want to know how Melanie's drive home will go. Want to drive to Lubbock for Christmas w/ that sister and her brood. I just can't pack bags greater than 10 lbs or have to get a niece or nephew to pick stuff up. We'll see, I'm thinking the cabin fever will be really bad in another week.
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Ginnie that is great news! Sorry about the Diarrhea tho. You'll be happy to know the L breast that had the weird area-the orange peelish area....Dr. D said he worked on it up under the skin and between the flap....BUT and he told me this as we were doing the preop. Part of the issue is weight-of the breast(Like I thought) so when he lifted and shaped it really helped and basically made it go away. So I think I told you guys I am or probably will be a full C small D which is great...I'm sure you've all been wondering(kidding). Have been wearing the black bra that seems to coordinate so nicely w/ this other outfit but the thought of being bale to go w/o for the first time since about jr high thrills me to no end. I had to be re-educated again....yes I was nipple sparing....when they do that they leave nipple areola complex intact and do the bottom vertical so it can vascularize...I had FORGOTTEN it is now vascularized onto the flap! so when he did the mastopexy it looks just like a normal mastopexy but he cut around the nipple areola complex....got all that?
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Ok, Melanie's golf plans got rained out so she's shopping and eating!
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Glad to hear Meanie has made it to NOLA!!!
Ginnie!! I put your Stage 2 up there in the list, girl, May 7!!!!
I keep forgetting to measure myself, the TRISHA METHOD of boob measurement.
Jenn, I think I got all that, you have a circlular incision around the whole areola complex?
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Sassie just called me.... Dr. D was very late with her pre-surgical appt (2.5 hours!! surgery must have kept him)... So she is weighing options and deciding if she wants to do the belly muscle stitching! Surgery tomorrow. I told her to keep in touch!
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Hello my sisters ~ here I sit in my hotel bed shaking my head in amazement at my lot in in life. I arrived here in New Orleans 8 days ago, a woman with Invasive breast cancer facing the loss of both breasts. Tomorrow, I leave New Orleans moving sorta slow, feeling sore, but rocking surprisingly beautiful breasts. I am so incredibly grateful.
You guys have been an amazing support. I don't think I would have ended up here if not for you.
I had a bilateral mastectomy and immediate bilateral SGAP reconstruction with Dr. Massey and Dr. Sullivan. The most amazing thing is that I have felt zero grief. I don't feel like I've had a mastectomy. Pardon my lack of modesty but somehow I ended up with better breasts than I've ever had. I thought I would feel a loss, or feel a void. I thought my chest would feel empty or numb. These puppies are warm and I feel everything. These aren't fake, they're my other better breasts, lol. Just like a car that has spare tires. My spares were in the trunk.
Warrior - I am happy to know your husband's surgery went well. I was thinking about you.
PlainJane - Hugs and welcome home.
I leave tomorrow to go hug my family. It's all very good!
T
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Hi everyone!
I made it through my surgery this morning just fine. So far, so good anyway. I have NO pain at all as of right now. I have a pain ball for my hip and I have not had to punch the pain button yet. Instead of the GAP flap, Dr S suggested the hip free flap, so that is what we did. I am not sure, but I think I saw MelanieW this morning when I was going in. Everyone is SOOOO nice here!!!
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Teel--spares in the trunk! I love it!! So glad you're happy.
Christy, I hear those hip flaps are super-juicy, so expect to name your drains and sign adoption papers!! Glad you're doing well!
Anne
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Teel... your spares were in the trunk.. LOL I love that.. my spares are in the trunk and I get to take them out in February... and I'm wondering if I should be putting more air in them while I wait.. LOL I am so glad you are happy and don't feel loss... love to hear it...
ccbaby.. congrats!! No pain sounds good to me!!
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ccbaby are you kidding me. You just had your surgery and you are already posting!!!!! What a trooper you are. I was so out of it I don't even remember much of the first day or so. Sleep well it is all over now.
Cathy great to hear all went well with your husbands surgery. I can just picture the two of you with your lap tops in bed. Wishing you both a speedy recovery.
Teel too funny the "spares in the trunk" line. Have a safe trip home.
Sassie you are up next!
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