NOLA in September?
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Thanks to those who said I shouldn't travel to the Galapagos Islands at three weeks, even though Dr said I'd be fine. Two days ago, I was feeling sad and thinking I might change my mind and go... After a day and a half of getting things ready for my daughter and husband to pack, I'm exhausted. I've been careful about lifting, but my chest really hurts. I ordered a lot on line. Yesterday an enormous box came from REI, it was like shopping in the living room. We're only keeping three items -- but it sure beats driving around looking for the right items and sizes. I'm three weeks out from surgery today and there there is absolutely NO way I'd be able to leave for such a demanding trip tomorrow. 2 weeks of rest and missing my daughter, thank goodness for Skype!
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I don't recall if I mentioned that my end-of-treatment PET scan was denied by Aetna, so I had a CT scan that showed a small liver lesion. The report also had an impression that there is no evidence of recurrence or metastatic disease. My MO then tried to get me a PET scan to check the liver, which was again denied, even after she had a peer-to-peer with the reviewing doctor. Something about not having a biopsy or other imaging that indicates disease. My MO was about to order an abdominal (liver) MRI when I reminded the nurse on the phone that I can't have an MRI due to tissue expander, so either the MRI waits for weeks until after the TE is removed in NOLA, or something else will be ordered (I have no idea what).
Meanwhile, yesterday's pre-op EKG for the Center came back with something that may be abnormal, so MO wants me to see a cardiologist (a first for me). I asked them to try to get me in this week, because I'm leaving to visit family next week, and home only a few days after that before going to NOLA. Does this happen often, something on the EKG that turns out to be OK? What can I expect from the cardiologist for heart testing? My last echo was 2 months ago, with EF of 63%.
Time is of the essence, and I'm trying to be composed and pray through it all. I don't want to lose out on DIEP if these are momentary benign conditions; supposed to have surgery 3 weeks from today! Can this work out?
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Ann - Can they do an abdominal ultrasound? It is not quite as accurate as the PET/CT, but since they will know the general area that they are looking at, it will help. I had a small lesion on my liver - turned out to be a hemangioma (confirmed after repeat CT scan and ultrasound). Also, my EKG came back abnormal right before my stage 2. The hospital here sent my test results late (after I had to call every dept. and have them sent, even though the orders gave the fax number for them to send to the Center). Dr. S shipped me right over to the cardiologist for a consult right after my pre-op appt. It all worked out. Hang on... it can still work! ((((hugs)))))
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Pandz, Cigna is in network, but there are many different "flavors" of Cigna. you would need to call the center to be sure your Cigna is actually the in network one. I had Cigna (south?) and it was in network (I'm in NC).
Willy, thinking of you, do over mastectomy, I mean REALLY!!! (good grief!) Glad you landed in NOLA. As you've seen, many of us had Dr Stollier and he is great. Do let us know how you are doing!
Coming up Friday!!! Fairway hospital is in... I hope you two can find each other....
June 29 - Harmonysun - Stage 1 SGAP with Dr. M & Dr. S, Fairway Hospital.
June 29 - JannelleG - UMX w/ Dr Lagarde, Stacked DIEP w/Dr S, Fairway hospital
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Hi all. It's been a while since I was on this site. Just read many of your posts and want to say how amazingly supportive,informative and comforting everyone is. I have been reading and learning from each of your personal experiences. I have my date set for July 25th with Dr. D for bilateral hip flaps.The thought of the long surgery frightens me yet nobody seems to have been too negatively affected by it from what I can gather here.Did you awaken pretty easily? Did many of you require blood transfusions post operatively? Would self-donation be an option?I had asked Liz at the center via email many weks ago,but she never responded. I understand that she had been on a type of leave herself and just got back. Thanks for all your help. Good luck and healing wishes to everyone.
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Glostagirl checking in from "the other side". I've been battling diarrhea and nausea, and haven't been able to eat. Dr. M kept me at the Center an extra day, but I'm finally resting comfortably at the Homewood Suites. I'm not venturing out, between the nausea, the dominatrix, my screwed up knee and the heat, I'm staying put! I've gotta be good or she might not let me go home Thursday as planned. Have to tell ya'll that I keep peeking at the flap to make sure it's for real, and every time I see it's soft, warm, pink beauty I cry tears of joy. Thanks Dr.'s M and Sullivan!
Had quite an adventure getting all my scrips filled, my credit cards wouldn't approve, my SIL tried her MC and that wouldn't either, luckily her AMEX came to the rescue! Same deal at the hotel. Apparently my husband, who was also traveling used the card out of state and then when I used it a little later in NOLA it kicked off the fraud alert. Also, the CVS we were at couldn't fill one of my narcotic scrips and wouldn't call any other CVS stores to confirm if they had the drug. The Limo driver came to the rescue, his daughter is a pharmacist and had worked at that CVS, her best friend was working at that store and she, after chatting with him, agreed to make the calls, yeah ~ he got a good tip! Apparently it's against policy to do that with narcotics due the high rate of robbery. Makes sense.
I enjoyed meeting several of ya'll at SCSH, SallyM sure hope things are turning around for you. Jamie thanks for the little treat. BluePansy, who's not listed above had her procedure Thursday, was released before me and appeared to be doing great! LAstar was looking good too.
Pandz, I have a BCBS of MA PPO, it's not with any of the networks on the Center's site but they approved my surgery and Dr. Massey. Good luck.
ch968.....at SCSH you wake up in your beautiful room, not in a recovery room. When I awoke, there were several people hovering, they asked me a question, I don't now remember what and I said, "Oh, I couldn't possibly do that I have a 5:30 pick-up for my surgery". Dr. Massey smiled and gently said, "Dorene, your surgery's over sweetheart....." I remember very little of that first day, but I know they took great care of me and made me as physically comfortable as possible. This is a difficult journey, I had a breakdown two days ago, cried and said what the hell have I done to myself. My nurse was very comforting and said that these feeling were very normal and would pass.
Edited to add:
You'd probably have to look into banking your own blood at your local facility and then making the arrangements to have it transported. They blood-type you at the center and have units on hand if needed, I didn't need them. I had Uni-lateral stacked DIEP.
Wow, 600 pages!
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ch968... I had a blood transfusion for my second stage I.. I was kind of freaked by the idea and asked about slef donating.. The problem is if you donate locally at home and have it sent down, it costs like $800 per unit... so that was out.. and so I was trying to find NOLA donors. I found one, and then didn't need the blood, so it was put into the blood bank... then I had my second stage I a month later and that is when I needed 2 units. So I got whatever was in the blood bank... So even the best laid plans don't always work out. They assured me they test the blood thouroughly.
And I had a lot of anesthesia last summer (3 surgeries within a month) and I was fatigued, but it does pass.
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Glostagirl, so good to hear from you. You are all tucked in to the hotel and out of the heat....smart girl. Don't worrry about the pitty party cause we have all had them. Keep healing and feeling better every day.
ch968, I had two long surgeris and no blood was needed. Like Glostagirl said, you wake up in your private room. Not a recovery room. No problems with that. I just wanted to go back to sleep and have some ice chips. You'll do great.
AnnAlive, so sorry you are having to go through all this crap so close to surgery. Things have to work out. Stay positive.
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Thanks again guys. I will think a little about the pros and cons of blood self donation. Hopefully I won't need any, but as you said about the best laid plans... Three surgeries in one month? Geez.
Hope you feel better Glostagirl.It sounds like a sick stomach from the antibiotics and narcotics possibly.
I am happy for you though that your surgery turned out so well this time. I had to laugh about your comment about when you woke from surgery. That's what I keep telling myself... it will be like a short nap and then I will hear those sweet words too... it's all over now! Keep us posted about your progress.
Pandz- you asked about insurance. Mine is HMO BCBS MA I have out of network benefits 30/70. I was able to convince BCBS after a long fight (7 months) to pay this as a Single Case Agreement (my BCBS has no contract with the Center), so I wouldn't have to any pay out of pocket, copays or deductibles etc. I know that this was a bold move, but I kept telling them they would need to negotiate a deal then with the Center since the procedure was not offered in-network. They were very hard to work with and my company is self-insured, but I was incessant with emailing my insurance rep and my HR person on an almost daily basis for updates. They got so sick of hearing from me I guess and finally gave in to something I shouldn't have had to fight for. Good luck. This insurance stuff has been a headache for so many of us.
Good night everyone.
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Glostagirl, I'm so glad to gear you doing so well! Homewood suites is a good place to recover and avoid the heat. Fyi, we did have groceries delivered from whole foods & it was well worth the $30 delivery fee to have yummy organic food to heal with.
SallyM, I'm sorry the timing didn't work for our visit. They were trying to make me walk for the first time post-op and it was quite a struggle! I hope the financial issues are taking a back seat to your healing right now.
Jamie, thanks for the sweet treat!!!
I got home today after a looooong day of travel back to oregon. My pain meds have given me insomnia, so it was a rough day of travel on one hour of sleep. It is so good to be home!!!! My sweet husband and four-year old daughter are taking great care of me & I am fed, tucked in bed, and heading off to sleep. Feeling so thankful to have the journey and surgery behind me!!!!0 -
FYI, Glenn drove me to the airport today and I told him that a lot of women were thinking of him after his loss. He said to tell everyone hello and thank you for your thoughts. He said he was always impressed by the way the 'girls' can go through treatment and still smile and laugh.
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Glosta- if you can get to the drugstore try Align probiotics. I had the same issue after my last stage 1, my body didn't like the antibiotic Dr M prescribed. Align allowed me to eat and kept things from getting worse. There are diff probiotics with diff ingredients, Align is the one my internist recommended.
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good evening all.....well here it is....the eve of departure for nola....getting restored after 4 years...kind of feeling a lil bipolar...lol...excitement and energetic....to what in the world am i doing.....
.....so...i didnt pack much....but i did pack sterile gloves, alcohol wipes, and pads...for the drains....is this necessary...or the hosp will give it?....
wondering what ive forgotten to do.....so much planning to get to this point tonight....:))
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Harmony, the hospital will give you everything you need. No needs to pack ANY medical supplies.
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Harmonysun, Oh how I know what you are feeling! I leave for NOLA next Monday. One minute I'm happy, excited that this is finally going to happen after 5 years, then the next minute I may be tearful and wondering what am I doing to myself! I'm beginning to feel alittle bit crazy! I dread the post-op/recovery phase. I read some of the posts on this thread with the ladies describing how painful and miserable they are and I'm beginning to wonder how I will ever get through that time period! In my heart I know we will be glad we pushed forward but I never thought I'd have these feelings!
Where will you be staying post-op? Hang in there and know that there are others out here who are feeling the same! Hugs! katiejane
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Katiejane, I am probably one of those "miserable" posters but I do NOT regret doing it. The initial recovery was harder than I anticipated but IT WAS WORTH IT to me! I post about the difficulty because it is tough but it is doable. NOLA nurses informed me I have a high pain tolerance but a low anxiety threshold - I had never been tested in this way before but I think it is accurate. In other words, if I can handle it I know others can! You can get through it and before you know it you will be the 4 month post op person supporting others.
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oh thanks so much eva and katiejane!....i will go unpack the medical supplies...lol..thanks eva!....
thanks katiejane...cool you are there to understand right now, i know i should get to bed, but then when i wake up, it's the day of leaving!....and then a lil bit of a whirlwind....staying at hope lodge tomorrow night as i have early morn consult with dr massey..first time i'm meeting with her...and see what she thinks of my situation in person........wonder if i should bring my coffeepot?....lol...love my percolator!....then off to another hosp tauro for ct scan....then across the bridge to covington about 40 mins to fairway hosp for presurgery stuff...my surgery is at fairway cuz of insurance...then to hillcrest a timeshare type place we have for the week.....my sister will be coming at night and before i know it, will be surgery morn....
i know we'll get through it....i had a bilat mx 4 years ago, and the scars are practically nonexistent and i just dont even remember a lot anymore about it....so...
....sometimes i guess we just need to do the best we can to prepare...and then to trust...that it will work out....
.....so i have this outlook that i will quickly be off pain meds and walking and walking....lol....well, we'll see...lol...:))
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p.s. Before surgery I told Dr. D that I could hardly wait to be dealing with "the dreadful" drains. I knew that would mean I was through the surgery and on my way. Peace, Tam
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jane...that is so encouraging to know that even though it might be a lil rough road ahead, that it is a road worth taking.....
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oh, tam not jane....:))
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yay lastar on getting through it all and home....i'm sure that feels good....happy healing lastar and glostagirl!.....~peace n' smiles~....brenda...:)
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ch968...my sister wanted to give blood for my surgery in two days and i guess dr massey said they dont do donor directed blood?....and that it was highly unlikely i would need it....
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Arrived in NOLA this afternoon after 9 days away at dance camp. I was blissed out and finally got to a place of acceptance. Now that I am finally here I am starting to feel the anxiety creeping up. I know everything will be okay I am just a bit nervous. I have tomorrow to explore NOLA and will have all my appointments Thursday for my surgery on Friday. Yikes
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AnnAlive - I totally hear you! Time is of the essence... I'm also trying to be composed, but I lost it today. I am also supposed to have surgey 3 weeks from today!
DIEP Stage I Questions: I was told "Wear something that is supportive that does not constrict your breast for 3 weeks after your operation" Do I really need breast support? I'm having problems with hot flashes and sweats (Tamoxifen). I prefer just to wear just my pj's (without camisole) and clip the drains with safety pins on my pj's, but if I have to wear a camisole which one offers support but is not constricting?
Also they recommend wearing high-waist bike shorts for the first 4 weeks. Any advice?
How many times a day do you change your dreesing and for how many weeks?
Thank you
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Hi Ralston,
as opposed to bike shorts, I've been wearing something like Spanx, another brand from Target called Assets. I got them a little smaller, for more compression. Totally comfortable sleeping and under clothing after your drains are removed. They're probably less expensive than bike shorts, and easier to find. Plus bike shorts often have padding in the seat. My PS's assistant gave me a binder at discharge and I wear it, but only in the house, not when out running errands. Regarding bras, my surgeon sent me home in a surgical bra to wear for the first 2 weeks. Then I switched into comfortable non-underwire bras, but they became uncomfortable, not just my breasts but even my skin. I had gotten some very light weight camis from TLCDirect.org and they're working well. For some reason their website is tricky to find certain things, so do a search for "mastectomy camisoles." I have item # 8067, which is made of a special cooling fabric that i have liked since i started "chemopause, which is,why I happened to get them months ago anyway. Btw, this is only light support, it has shelf bra, but my breasts are now only a small B, so I don't need much support, plus I gone up a size for extra comfort and support. They're very good about returns -- I sent some unused items back about four months after purchase and it was no problem.
I changed my dressings twice a day for two weeks. I have a few areas on my abdomen that need to continue to be dressed a little while longer. I'm using non-stick surgical pads with a little paper first aid tape at the cormers. Without tape, the pads would fall off every time I go to the bathroom. I'm allergic to regular medical tape and your skin might be extra sensitive anyway after surgery. My sister is a nurse and brought the paper tape for use in the hotel; it was one item that I was very happy to have. Of course you'll want to tailor this to the recommendations of your particular surgeon.
Try not to worry too much and do what you can to de-stress. You'll get through this and be happy with the results! Best wishes!0 -
harmonysun and janelleg, I am closely following everything you say. I will be going to Fairway for my BMX and stacked DIEP in August. Are you renting a car? Is anyone staying at the hospital with you at night?
I wish you peace and positive thoughts. I wont be far behind you.
Cherrie
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Ralston- If your flaps are big (C cup or larger, maybe?) they'll be heavy. And that weight will pull down on the new blood vessel connections. It'll also pull on where the flap is attached, but that will just make you achey. You want to avoid stressing out those new, very delicate blood vessel connections.
It sounds like a catch-22--supportive but not compressive--but basically they mean a not-too-tight wirefree bra. The surgical bra will be fine at first but it's a little bulky (unless they give you the lighter one, in which case it'll be too light for long-term wear). You'll probably want something a little more normal looking after a few weeks. Look for no wires and stretch cups--in whatever form seems best to you. You'll probably want to wait until you get home so you know what size you are.
side note... I was a DDD right after SGAP surgery (DD now). It was IMPOSSIBLE to find something in that size without underwires and I was incredibly stressed out by having to look. If anyone here needs help finding a post-surgery bra for larger "girls"--let me know! I'm an expert now.
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I wore the surgical bra for 2-3 weeks, and did not want to spend a lot of money on a temporary next step bra, so went to Target (or Kohl's.. can't remember) to buy a 40D or 42D which is what I needed at that time (I normally wear 36C). I found some reasonably priced wireless padded (so they woudn't compress much) bras...
Also about spanx/bike shorts/assets... If your doctor doesn't give you anything, I would consider the Marena girdle... I also bought the assets, but found they ride up some, and also slip down a bit... The Marena gave better compression, but the assets were easy as the next step.. so I went from the girdle from the doc to the assets after stage I but for stage II went from teh doctors girdle to the Marena and then to the assets, and that was better.
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Anita - I hope you are hanging in there today. Thinking about you.
Jenlee - We are 3 weeks and 1 day past stage one today. Woohoo!
ch968 - I needed 3-4 units of blood. It was cost prohibitive to donate myself.
Monday, I felt really good and had lots of energy. Tuesday, I was totally exhausted. Feeling pretty good today. Hope it continues. I did get out for the first time yesterday and went to the spa to get a pedicure. Also, had my 1st glass of wine since surgery. I am still having a few stomach problems. I tend to be burping a lot and I am not a burper - very annoying. The biggest pain is definitely dealing with the hip drains. However, slowly but surely the output is lessening. The past two days output from each bulb has been in the 30's
. Good luck to Harmony and Jannelle on upcoming surgeries!
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Glad to hear you are doing better Ksue. I will be 3 weeks on thurs, hard to believe, what a journey. I have been wondering how all you recents feel about your results being just out of stage one. I cannot say I am disappointed, but cannot say I am thrilled either. I have read past posts and seen some pretty fab pics, trying not to compare but it is hard. Because I am a uni I know it is difficult to match. I stayed small , probs a full B cup, so I don't know. For those that are well past, what kind of changes might I expect in the next 6 mths before stage 2 ?. Would love to hear how others feel about their recent results. I am trying to be cautiously optimistic as someone here also said.
Maybe just need some reassurance0
