NOLA in September?
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When in doubt, call the Center and ask!! Each doc does have their 'rules'. I do hate the compression garment and there are times when I could cheerfully just rip it off my body -- AND it causes no end of itching underneath!! The only thing the bra does for me is to ride up. I remember the first night I tired to sleep without bra and girdle, and I felt like everything was sort of 'melting' into the bed. Got back up and put'em on! LOL! I do admit to cheating a little on the amount of time to decompress before showers -- 20 minutes my scarred, sore ass! I take at least an hour! :-)
Cherrie, keep on walkin'! Whether in the condo or outside (and don't put the "others are doing it so I SHOULD be" trip on yourself!) moving is good -- and at your own pace! As you process out anesthesia and begin to feel more like yourself (and not eating doesn't help, regardless of whether you have an appetite or not, said Mrs. Pot to Mrs. Kettle! You do need the energy -- I used Instant Breakfasts.) As my mother used to say, and I always ground me teeth when she did, but she was of course right ... this too shall pass!
Pamela44 ... I think that while I was in NOLA, I felt better because there were people there who KNEW what to do all the time and it was such a snug safe harbor. I did find that I had more energy and (probably because the staff was on top of it), there was less pain and I moved sooner and farther than I thought possible. Once home, I didn't feel so great, even with friends about. Wasn't regular about pain meds so that rollercoaster ran most of the time, saw all of the things that I wanted to do (especially for myself) and knew I couldn't and shouldn't so didn't and that is a frustration, and because there were folks around, I didn't rest as much as needed. Hang in there with the lovely black "lingerie", check with the Center and your docs to see how soon you can divest (they seem to be in areas you don't need, but it is my understanding that the midriff and thighs are major catchment areas, so pressure all around), and try to relax into the healing process. It is different for us all, and even different from stage to stage (Betsy and I are a good comparison case!!). Today maybe not-so-good; tomorrow better ... know I am thinking of you ...
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Cherrie, I am so happy to read you are FINALLY on the other side of your surgery! I have been away from this thread recently traveling with my daughter for college visits. Amd my mother also just had a total colectomy for her second colon cancer. We, unfortunately, have TWO gene mutations in our family--BRAC and HNPCC. Anyway, lots going on!
But it sounds like everything is going well and as expected. I was definitely not one of those that walked around post op in NOLA, going to restaurants etc! Again, so glad the surgery is finally over. It seems like just yesterday we had a glass of wine on my deck:) XOXO Amy
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I am so looking forward to going home on Thanksgiving Day. I am forcing myself to eat more and drink more. I went outside and walked for the first time in 6 days. Saw a Hat Parade. We walked to fresh market and home. Slept for two hours after that. HaHa.
Sent some lovely pictures to Dr. M today. She thinks things look great. Just need to get rid of swelling, but not too concerned.
Ok-pains meds...........I hate the narcotic feeling I am not in horrible pain today. Can I do Tylenol and if so did you do as needed or keep up with it? My appt. at the center is tomorrow. Hoping for most drains out.
Thanks everyone. It feels like someone is listening. I know it is helping Pamela and a lot of others right now.
Amy it was so nice to hear from you. We will have to have another glass of wine on your deck this summer.0 -
Maggie- this too shall pass. Isn't this the truth?
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Cherrie, glad to hear that you are up and about! Fresh air and a little exercise is hard to motivate for sometimes, but it helps so much physically and emotionally. I'm amazed that you can be considering getting off the meds. I took them in longer and longer intervals, and taking a Tylenol in between helps to extend their effect. I hate the pain-med feeling too, but I had way too many friends drooling over my dilaudid. Blech.
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so as of yet I have not let myself fall apart over my 1 failed flap. just waiting for the ball to drop on that one.
I still have my hip drains in place. Also one on the left chest where the loser was. I want them out so bad I could spit. They do not give much off anymore and thought for sure DR M would take them out before I was sent home. SIGH....I really hate them. they disrupt my sleep and make wearing clothing a full pain in the butt.
At least the suprise "period" i got after surgery is now gone. My onc had just told me that I was 100% in full menopause. Wonder if she was right ...wouldn't a new baby in my mid 40's be just the kick in the butt I need. haha
cherrie I am so glad you are doing so well. I stopped taking pain meds 2 days before I left the hospital because I hate the way they make me feel. They will also stop up your intestinal tract and that is not something I particularly enjoy. LAstar is right....exercise is tough to start but makes you feel great when done. Hope your appt tomorrow goes well and you will be home sweet home soon.
I have started researching the gap flap procedure for March. Can anyone who has had both gap and diep give me a rundown on differences and similiarities. Just cannot wrap my head around having another major surgery again in 3 months. All in the name of boobies. I really cannot wait to be done with BC. I know when I am done they will be spectacular!
sorry if I am too much of a downer today...thanks for letting me vent a little
Maggie-2
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You get a limitless hall pass on complaints, Maggie! I'm so impressed with how positive you sound. A good sense of humor goes a long way in life. You get to cuss & cry too! They will be spectacular and you will need a diverse selection of body glitter just for your fantastic cleavage!
I think that Betsy and Glostagal are your go-to girls for the comparison. I'm hoping to avoid this club, but my left breast hardened after Stage 1 due to necrosis and swollen tissue, and Dr. D said we might have to try DIEP if it doesn't resolve. I won't know for up to a year if it will soften -- fingers crossed. I was pretty amazed at how little the donor site hurt from SGAP, but I might have had more to work with than the average gal.
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Evening all! I am at last home and in my own bed. It was a long day through airports, but we made it and TSA was totally a piece of cake.
Re the bra - my problem is that one of my drains comes out of the skin right at the bottom bra band. Nothing I do seems to help. Dr. M just called and will let my helper doctor take the breast drains out Tuesday. That will make it all more bearable! I also read that Dr. M wants a bra for 6 weeks and suggests going to a shelf cami before sleeping with nothing.
Cherrie - I promise you I did not want to walk, but Chuck is my inspiration. If he can do what he does with such good humor with all of the spinal fusions and damage, I push myself so I am not a drag on him. Being home is good as I can take it a bit easier and I have a feeling that at some point I am going to hit the wall.
I have only been taking the dilauded. I have oxycodone, but since it contains Tylenol I haven't used it yet because there was a warning on the Lovenox not to take with tylenol or nsaids. Two more Lovenox shots and I can change if needed. I am spacing the pain meds out as far as possible. I am only taking Flexerall at night (if I am able) because it seems to cause some rather interesting dreams.
Maggie-2 - you just keep sharing. It is good for all of us! Off to find some meds
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Good evening, ladies. I'm glad to see everyone is trudging along with their recovery. Celtic, you are so right about staying on top of the pain meds.
As you all know, a few weeks ago my oncologist told me that something showed up on the CTA done in NOLA, but he wanted to wait until January to do a bone scan. After some deep consideration, worry, and after the advice of you, ladies, I pressed really hard on my oncologist and am having a bone scan in the morning.
I'll update you all on the results as soon as I get them.0 -
Oh Marty! I am so jealous you are home. I am having very vivid dreams on oxy and the nausea has been bad. Dr. M is having me switch to Flexeral with zofane for nausea. I too am spacing out meds.
How is everyone sleeping? I am propped up on a couch. I go to bed about 10, but am usually awake by 4 or 5. A bed doesn't support my back enough. Glad I rented a chair lift when I get home.0 -
Maggie-2... I had GAP and DIEP and to be honest I never had any pain from the GAP flap at all.. and no problems walking around. I had little pain from the DIEP as well, but did have back pain from hunching over.... and so walking around after DIEP was more difficult short term. Revisions of the GAP flap involved a butt lift which was sort of uncomfortable, but not so much so that I wouldn't do it. As a matter of fact, I am getting a second butt lift in January.
I had my GAP flap when I had my MX and the DIEP second, and must say that the GAP flap is easier to recover from IMO... but I had heard scary recovery stories from DIEP, and it was nearly as bad either.
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On my cta a less than 1 cm " too little to characterize" thing showed up on my liver at Nola. Needless to say that has thrown me down the abyss again. I had a nl ct abdomen 8/12. I never would have consideered the prophylactic breast surgery if i didnt think i was free of cancer at the time. I am 3 yrs no recurrence ovarian ca 3c. I am waiting for the disc to show to my radiologist but assume it will take 3 mths to sort this out. Getting an earlier scan will probably not help since we will have to see if it grew. this may also interfere or delay my stage 2. And I was sooo happy with the breast results but this has just put a pall on everything and I find myself crying a lot. Incidentally I am doing much better physically and my recovery is going great. Scar is dry and looked knitted.
Cherrie glad to hear you are improving.
Maggie- you will get through the redo. Thanks ladies for listening.
Maggie 2- it was gat meeting you and thanks for the support,
Today- good luck I know exactly how you feel.0 -
Maggie2 - I had unilateral GAP done at the Center and previously had a unilateral DIEP done elsewhere. (The nursing care and skill of the docs was CLEARLY not as good as the Center) so I can't compare "apples to apples." I did think the GAP was an easier recovery but I know at least part of that was due to better care at the Center. I can add that generally the time with drains is much shorter with DIEP compared to GAP.
Pamela44- I am so sorry you are dealing with this - gentle hugs.
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I so very rarely post here, because it seems I am the one everything goes wrong with and I hate to scare everyone!! I really wanted to reach out to Mags since I have been down her road. I had a BMX with immediate DIEP at UNC in March of this year. My right flap failed immediately after surgery, and my left failed 10 days later. I never really had a breakdown about it, I was just kind of mad that it seems like this will never end. August 1 I went to NOLA and had hip flaps done. Was scheduled for stage 2 Oct. 18, but due to complication with an incision healing I ended up going back to NOLA for an emergency surgery Oct. 31 and had a rotational flap plus a free flap done from the latissimus fat (no muscle used, but I can't remember the exact name of this particular kind of flap by Dr. D) So, I have had DIEP, 5 months later GAP, 3 months later rotational and a modified latissimus. Is there anything left for me?!? Oh yeah, still waiting for stage 2.
If I could rate the healing processes, the DIEP was by far the worst. I struggled most with the back pain plus the general weakness. The gap was the most pain free and easiest healing. I was weaker after that surgery, but I think that was due mostly to being 1 month out of chemo. I was able to walk all over the quarter after that surgery with minimal pain, and most of the discomfort came from the drains.
This last surgery was a bit of a struggle. Dr. D thought it would be a 2 hour process for the rotational, but ended up being 7 hours because there was more necrosis than he thought and he needed another donor site. My scar goes all the way across my back almost to my spine. It's been 2 1/2 weeks now, and my right arm still hurts, my arm pit aches and my range so motion is not great. My right breast is half hip flap and the other half is from arm pit fat and back fat. I have an interesting figure 8 scar...the free flap from the back joins the free flap from the hip to make the figure 8. Healing for this one was tough. They told me my arm was pinned in a really awkward position for the whole surgery, which should explain why my arm still hurts for so long. I only left the hotel for 10 minutes and I was so exhausted I had to go back. I wasn't in as much pain as the DIEP surgery, but I was just whipped and I still can't put my right arm down by my side.
So this is my long way of saying, it sucks to lose a flap. No way to sugar coat it. The gap surgery is 100% easier, but to be honest...you'll be scared to death. I was so terrified I would lose another one, I didn't even get to enjoy the fact that the surgery was really kind of a piece of cake. Every single day i worried something would go wrong. And then it did, but i didn't lose the flap. I dealt with the eshcar for three months with blind faith that it was healing like everyone said, only to have all hell break loose and I'm bolting down to NOLA on a day's notice for yet another surgery, just SURE I would wake up without a breast again. But here I am with 2 breasts, a lot of scars, and a lot of faith that Dr. D will never let me down. Frankly, I'm ready for a break and wish I could just wait a year for stage 2. But with insurance stuff, financially it doesn't make sense for me to wait. So I head back to NOLA Feb. 22 for stage 2. Again with the terror, but again with the blind faith.
The gap surgery will be easier physically than the surgery you just had, Mags. Mentally, just focus 100% on thinking positive and knowing we have the best doctors in the world and they care about making us whole again. They don't give up, so we can't allow ourselves to give up. One of these days, we'll be done with all this and we'll be glad we stuck it out to the finish line. Gentle hugs to you!!0 -
Hi ladies. I had a beautiful weekend in Chicago. The Dr is in symposium was fantastic. I am so glad I attended. I am feeling anxiety free about stage 2 after going. I had my preop with Dr Massey today and the road map is drawn all over me. No nipples this time as I might need a 2b for symmetry. Very little scar revision needed so drains are not needed this time. Fat grafting and lipo of upper abdomen, love handles and injections on the right breast. Left breast is fine as is. Feeling like it will be super smooth and not too bad. I am up first tomorrow morning and hopeful for a Tuesday discharge.
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Hi ladies. I had a beautiful weekend in Chicago. The Dr is in symposium was fantastic. I am so glad I attended. I am feeling anxiety free about stage 2 after going. I had my preop with Dr Massey today and the road map is drawn all over me. No nipples this time as I might need a 2b for symmetry. Very little scar revision needed so drains are not needed this time. Fat grafting and lipo of upper abdomen, love handles and injections on the right breast. Left breast is fine as is. Feeling like it will be super smooth and not too bad. I am up first tomorrow morning and hopeful for a Tuesday discharge.
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Dianne... I had GAP and DIEP and in January will have the rotational flap using the under armpit and lat fat as well... this is to replace necrotic tissue, and a shrinking left breast. I hope my surgery goes as planned with a 2 inch scar. My surgery is a Wednesday morning and I fly out Saturday morning.. would you have been able to leave 3 days post op?
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Anita- Sounds like you had a great weekend and will be in good hands tomorrow.
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Wow, Dianne -- you are such a trooper. Very inspiring! There will be reason to celebrate when Stage 2 is done! Best wishes for continued healing and strength.
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Good ol' rotational flap. Hearing it more and more. My scar from the rotational flap is small. Actually, it doesn't seem to extend much further than the scar under my other breast. I had a lot of lifting done, so I have quite the inverted 'T' scar. I have nice ptosis now, so the scar along the inframamary fold can't be seen until the inch or two nearing the side/armpit area. We had been expecting to remove much more tissue but it turned out not so; therefor not as much rotational flap was needed. So it can go both ways.
I think it's always better to go into a surgery like this informed rather than expecting a piece of cake. So if it is a piece of cake, it's a delight! Thank you, Dianne, for sharing your experience. For me it's been a great comfort that our docs are so experienced that they can have Plan B, C or D! When others would have to stop after the first surgery.
Ttay and pamela, the waiting is the worst. I've been waiting on results and doctor opinions the past 2 months! Do whatever you need to do to keep from becoming stalled. I feel like I'm starting to emerge from a stalled mode myself. I get it.
Big hugs to all. Get outside and walk!0 -
Omg Diane! It amazes me what so many of you have been through. Thanks for sharing.
Pamela- I am so sorry you are going through this. Remember, my stage 1 was canceled due to a spot on my lung. I cried a lot, but also know those damn CT scans show up everything. Most all of these are benign. I am happy to hear you are recovering well from stage 1. My prayers are with you.
Anita- my stage 2 may be in Chicago too. Please let me know how you liked it there. I went to one of her symposiums at the Four Seasons too!0 -
DianneNC...thank you for that post. You have really gone through so much. I cannot imagine your huge disappointment when both flaps failed the first time around. My mind goes back to the moment that night when Dr M put the doppler on leftie and she made no swooshing sounds. The look on her face said it all. bless your heart for your strength to endure. You have calmed many of my fears about what lies ahead. For me I just can't wrap my head around the fact that I have to go through a major surgery again. I spoke with DR M last night and she also helped me with my fears. She said NOLA was the Best and ONLY option if I wanted the best care out there. She explained the gap would be easier for me but harder for the docs...longer hospital stay as i have the 1 failed flap now they will watch me like a hawk. Wear the drains longer--did get 2 removed yesterday so only 1 left in the left hip. She said I will have more restrictions too due to having had a failure already. Hoping that in 3 months I am ready but if not we will just wait til I am physically and mentally ready for it.
Maggie-2
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Today is the first (I think; or one of the first) surgery Dr. M is doing at Illinois Masonic (with willy), she just got privileges. Which is great since before she only used an outpatient surgery center on Michigan Avenue (I had a few stage 2+'s there). 900 N Michigan is nice enough but she could never do anything major there because it was only outpatient.
My fingers are crossed that Illinois Masonic works out for everyone. Willy's surgery is a good test case since she's planning to be admitted overnight. Of course, I'm done with surgeries so I can't benefit, but I live close to there and would be glad to be an escort or lunch companion when needed. So look me up, mermaids
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BRAS - I just tried the Miracle Bra "as seen on tv" and love it. Its wide on the side so doesn't bother the incisions if you have them there. Soft support and some form to it. No hooks just step in it and very comfortable. I bought a 3 pack (white, beige and black) at Walmart by the check out. Inexpensive too!
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Gmp300-does it slide over the girdle??
Going for my post op in one hour. Praying to lose a couple of these drains. I am puffed up now. Ankles and knees. It doesn't hurt. Not eating/drinking much but feel better today. I am off narcotics for 24 hours now. Not in much pain at all.
Off to catch a bus to the center.
Maggie you are definitely in the best hands when you are ready.
Cherrie0 -
Gmp300 = thanks for the tip about the bra. Will share with DH. Just realized that with the breast drains coming out tomorrow I might be able to have a softer, friendlier bra. Now I need to figure out a size since I haven't worn a bra in 27 years. I am sure my band size of 32 must be a bit bigger now as I weigh 20 lbs more?
Cherrie - take a deep breath. I was very swollen when I went to see Dr. T for post op. He gave me lasix. Took that for 2 days with little change. Then came the day to get on the plane. I was so trussed up with compression garments between the feet, legs, body, arms and hands I felt like a turkey ready for the spit. I took all off about 3 hours after we finally landed and this morning I awoke with normal ankles and can get my wedding ring off.
Jeskachi - so glad about the new hospital in Chicago. Becky mentioned it. I do hope it works for her and maybe helps with some of the frenetic travel. I told my DH that if Charleston didn't work timewise for Stage II I would consider Chicago since I haven't been there in a century. What a great central location!
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Hi ladies. I am on the other side of stage 2 and doing great. Surgery was 3 1/2 hrs and I just ate lunch. So far I have no complaints. The staff have been super nice and needs have neen adequately met and then some. Dr Massey has lots of practices that are a "first" for the hospital and I have been the center of many curiosities. I love all the compliments I am getting on my girdle. It is kinda funny. Ready to nap. I will share more details anout the experience when I get home tomorrow. Take care all!
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Anita-glad to hear you are doing well. It looks like I may come to the same place in late Feb. if they will also do a complete hysterectomy. I will be anxious to hear about your experience. Did you stay in the Lincoln Park area??
Marty-Dr. Sullivan has me on LASIK too. I can't swallow the big potassium pill with it. I have three days before leaving. Hope these things that used to be legs start coming back. Three of my four drains have been pulled. HEAVEN !! Also, I will take Alleve for pain, when needed.
Resting after a long day.😀0 -
Cherrie- The hospital is in the Lakeview neighborhood, which is north of Lincoln Park. But there aren't a lot of hotels in either place. A few small boutique hotels maybe. You'd be better off staying downtown and taking a cab or public transportation between the hotel and the hospital. It's right on the brown line El route (Wellington stop, less than a half block from the hospital). That would also be more convenient if you wanted to check in at Dr. Massey's office before leaving town. She works and lives at Lake Point Tower, which is near Navy Pier.
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Cherrie - I couldn't swallow the potassium pills either. They are huge. Chuck got a good laugh watching me try it the first time. For some reason I read the info sheet and found out i could break in half and swallow that way. You can also dissolve in a glass of water and drink, but I thought that might be way too yucky! Yeah for drain removal!!!
Anita - I can not believe that you have already posted. So glad you are doing well. Thanks for "breaking In" a new hospital option for all of us
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