NOLA in September?
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no pain Betsy...sheesh....
ok,i have another random pre-op questions...i am very recently post chemo and my oncologist wanted me to start taking vitamin d ( since levels very low and good idea to protect against BC anyway) and then i also added biotin cos I personally wouldnt mind hair again...it just occurred to me that maybe i should be taking other supps to build up( after chemo) like even just multivitamin at least? and are there other recommendations for supps that are particularly good for flap surgery? i know a bit about the ones to prevent bc for AFTER, but to prepare for surgery?
and alternatively, when should you STOP taking anything prior to surgery??
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Hi Betsy, Yes, my hips are indented but it looks soooo much better than those first few days. It amazing that now, at 7 weeks, it is basically one thin pink line across my back. I am hoping that the indentation will be smoothed out at stage 2. I am confident that it will be. I am scheduled for late Sept. It's good the drains are not bothering you. I was able to stay pretty comfortable with them. My problem had to do with the production stubbornly staying at high levels or the drain not working for a time. Then, after getting an infection, it was time for them to go. Fortunately, that seems to have been a good decision. Thank you Dr. S! You do have nice accomodations in the hospital so it's good for you to stay as long as you can. I left after 3 days and probably should have stayed another day. I was feeling nausous too. Turns out it was a reaction to the antibiotic Bactrim. I was switched to Keflex and the nausea went away. You should ask if you might be reacting to the medication and, if so, have it changed. It makes a huge difference. Hang in there... it gets much better!
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louis13 - The doctors send you a list of medications to avoid starting 2 weeks before your surgery. They encourage you to take a multivitamin twice a day prior to the surgery. The are okay with the Vitamin E that is in the multivitamin but otherwise do not take Vitamin E. I was able to continue taking my Vitamin D supplement. My level was as low as 7ng and is now over 40ng after taking 2000 iu/day for over a year. After my stage 1, 7 weeks ago, I had an abrasion under my left breast. For 5 weeks it hardly improved. I read about zinc as important for skin healing and I also had other signs of zinc deficiency (white lines on nails) and decided to take 50mg zinc along with my other vitamins. In one week there was substantial improvement. It was pretty amazing. If you want to take zinc, I would check with the doctors but it's not on the list to avoid. Also, after surgery, take all your supplements 2-3 hours before and after your antibiotics. Some supplements can compromise the effectiveness of the antibiotics.
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To clarify... don't take your supplements at the same time as taking the antibiotic. Wait 2-3 hours after taking the antibiotic to take your supplements. Then wait another 2-3 hours before taking your next dose of the antibiotic.
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Rhonda... They have me on keflex... I think my minor nausea is food based... I don't have much of an appetite... And that is a good thing... Jump start some weight loss... Or it could be from medicine... I have a headache and am a bit light headed... Everyday things improve...yay!
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Betsy-- hope you doing good.
I have lost about ten pounds since my surgery april 29th. I am wondering if that is too much weight loss? Any feedback?
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I think that is great heather... My goal is to drop as much as I can prior to stage two
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ok just fabulous...so for those that dont know, betsy has been few weeks ahead of me trailblazing all the way...i keep trotting after her onto the next breast cancer board ...anyway, tough act to follow if you catch my drift... first there was chemo, sick hair loss, huge weight gain even tho cant eat food and all tastes terrible dragging self to gym to try and counter... next comes surgery, ouch hurts and weeks of recovery still to come.. and now i learn that after this comes dieting/exercise !!! just PRIOR to more surgery..so then we do get to party?????? ever??0
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Definitely a journey... That does end... And changes us forever... We can all do it!
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ref, thanks for that..i have not received anything from docs...hmmmm. maybe will follow up tomorrow but i will start taking multi now.....I should have got onto this straight after chemo but left on trip so fast and am only just getting round to thinking of these things. the vit D came from oncologist cos my level was so low and that and the biotin( vanity) was as far as i got..
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Louis 13...you will be told to take iron twice a day for one month prior to surgery.
Betsy... I had my port taken out at MDA. They said it would take about 15 to 30 minutes. It turned into 1 1/2 hours. They said they had never seen a port so deep. I thought they were going to puncture my lung. The Dr. At one time was up on the table with me trying to go deeper. On top of that while they were digging around in my chest, the fire alarm goes off. I keep asking what it was and they just ignored me until I finally demanded they tell me. They said it was just a test. NOT! My husband had to leave the building. He was already worried because he was expecting 15 minutes. But alas, we survive to go on to something else. Hope you feel better soon.0 -
Dragon, you are worried about your nips, but only time will tell. If you hear what Sandy has to say, there're really not too much you can do I think, they're sort of going to do whatever they're going to do. I would say try not to worry too much, and just believe that when you get the tats that things will look so much better. Even if you end up with a little bump there, it is something more than you what happens with 3D tattoos!
Betsy, glad you are doing well. I think what you are feeling is totally normal.
DJ, hope all is well!
Upcoming!
July 27 - BrandyB, Stage 1, NOLA. (St. Charles surgical center. Delayed recon on the left and a mastectomy/recon on the right. DIEP procedure. Surgeon is Dr. DellaCroce.)July 29 - Toomuch - Stage 1 - mastectomy and bilat hip flap reconstruction with Drs. Stollier, Drs S & D, NOLA.0 -
Oh bettye... Sounds like my future... And Rosemary I have my list here...I will pull it out and tell you the general stuff... I did not take iron in addition to my multi... Be sure not to take any advil, motrin etc... Or vitamin e... Or anything that's a blood thinner
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bdavis, so glad you are doing well. Crazy thing about your port, I am sure it wound be no big deal for vascular surgeon or interventional radiologist when you get home. How does the new you look? I was messing around on the computer last night and was looking at the photo album for the NOLA docs, what truly amazing work on all sizes and shapes of ladies.
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Bettye, your port removal story is so awful I had to laugh! Or cry! It's so outlandish it sounds made up. I mean, wth could the Dr be thinking up on the table with you! And you were awake for it! You are right; we survive one thing to go on to survive another.
I hate my port. As if anyone actually likes their port. I am glad I have it, but I feel it all the time. I had no idea ports could be difficult to take out. I had in my mind I'd just wait for Dr S to take it out, even if it meant waiting a couple months for stage 2. Welllllll, not anymore! The breast surgeon here put it in my jugular (sp?) instead of subclavical (or whatever), plus there is a suture in there my onc said she's not used to seeing. And it can go far into the heart? *sigh* It's all too freaky. I'm hoping since she put it in, she can take it out quickly. I told my husband this evening that I am getting the port out ASAP when chemo is done instead of waiting for Stage 2. Hubs surprised me and said he only wants Dr S to do any surgery on me! I still have a couple months to get hubs used to my decision.
Betsy, you sound good. As wonderful as SCSH is, I'm sure it's getting old by now. I did drop 10 pounds in the month after surgery, but now I've put 5 back on since chemo started. My PT I've been working with will start me on a program to get back into shape---better shape than before cancer. Which means dropping the pounds. I'm supposed to feel better on the second half of chemo. I'm done with AC, now on to Taxol. AC has left me so weak. It is indeed quite the journey.
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Louis13, so sorry that Eve and I missed you in the NY area while we were there! My trip was hectic because I had a business event at either end and lots of driving (Atlanta to DC and then a train to NY) all within a week. I am going cuckoo over all of the fantastic pink stuff I am finding at these gift shows (attended another today). Giant pink crystal rings, and huge pink CZ earrings, pink butterfly western boots...and today I ordered custom pink polka dot robes with giant pink rhinestone ribbons on the back, and matching spa wraps. I have been trying to source pink robes with inside pockets to hold drains and I think I found a manufacturer. I've been looking for them for a long, long time! I am working with one of my favorite vendors to start donating a really nice brand of pink fuzzy slippers to women having breast cancer surgery in local hospitals---she and I are really excited about it. Well, I have not gotten much sleep for the past week, so off I go. Glad to hear everyone is doing well! Oh, and I am taking a liquid iodine supplement due to studies I read about it---we are often low in that as well as Vit. D. Everyone take care!!!
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Well...it seems my one problem is my 100 degree temp... Just enough to make me feel yucky... And it's respiratory... So I drink, walk, and do breathing exercises... And they loosened my girdle so I could get a deep breath... Besides that, I am healing well... But I don't like feeling ike. And yesterday my temp was up at 102.
The nurses have been great!0 -
Betsy - It is great that you are doing so well but I hope you kick that fever soon!!0
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Betsy- I'm glad if it had to happen there and not at home.Your in good hands, when I came come 2 weeks after I got fulid around my lungs and had to go the ER.
Laura- how are you feeling? They have me down for Stage 2 Sept. 1st and I go back to work on Sept. 6th i really need to talk to Dr. S soon.
Did anyone have problems with stage 2?
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Hi Leslie - I'm feeling pretty good. I'm actually trying to get into my local dr here today to see if she will remove my sutures in my belly button. My button has been giving me fits from the start. All of my other incisions look great, no more glue and healing very nicely. But that belly button is still ugly and has some sutures that I can feel poking my finger if I look around in there. I don't feel comfortable pulling them myself so I'm hoping my doctor here will do it. I'm scheduled for Stage 2 Oct 17th. Sept was too hectic for me personally to try to get it done then.
I think it depends on what you have done in Stage 2. Kathryn is still having troubles with her Stage 2, it seems to be tied to her tummy tuck though. If you aren't doing that it sounds like it can be a shorter recovery period compared to Stage 1. I hope you are doing well Leslie. I read that your last drain came out - that is fabulous!
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Laura- yes I am suppose to have it all done tummy,,lipo to fill in butt or hips butt lift Dr. S is out this week so I hope I can talk to him next week. Did you have a tummy tuck?
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Leslie - I did have DIEP so it was my tummy only - they did not use my hips. I have to say I could not have returned to work 5 days later. You are a teacher - right? I think that would be difficult, a desk job would be more doable.
I think I would need about 4 weeks - but I could very well be a wimp. Maybe your pain tolerance is much higher. I couldn't walk completely upright for a couple weeks. You will also have drains probably two for a couple of weeks. Just some things to consider. Dr S will be the best to ask though - maybe I'm all full of 'hooey' (as Dr D says)!
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Sorry to do hit and run posting but it's been tough getting internet access on the road. I'm still having some issues with my lymph nodes and the hematoma and would like to get a plastic surgeon in Los angeles to see me. I remember someone saw one. Does anyone have the name ?will catch up soon
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Betsy, still at St. Charles Surgical Hospital? You are now rivaling Amy for the longest stay.
It's so nice, I imagine it's hard to leave. Hope the fever goes down. I totally think you should stay there if you still have a fever.... 0 -
Surgery Thursday... And yes still here and just an hour ago my temp was 101.1...and I have told the doctors that I want to stay til I have a normal temp for a good stretch... So I am sure I will be here thru tomorrow at the minimum.
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Darn Betsy - Do they know why you're having fevers? I hope that tomorrow you have a fever free day!
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Kathryn - Why don't you see if Dr. Granzow will see you? He is in Torrence.
Jaimieh... did you disappear?!
Betsy - Hoping you turn this corner soon!
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Hi all! Haven't posted in ages. I have been checking on everybody but have been unable to post with my mind on so much other stuff. I am still in my hometown of Buffalo, NY with my friend who is undergoing chemo. I have to head home tomorrow and I hate that I cannot be here for her the next 2 months as she goes through treatment. Spring, I think you had asked awhile ago what type of cancer she had. She had leimyosarcoma, a very rare cancer, in the uterus. Most uterine cancers are carcinomas, this is a sarcoma. Pretty agressive as well. They found it incidentally when she had a hysterectomy for her fibroids. Most oncs will see one or two cases in a lifetime. She is going to Roswell, a major treatment center, and there have been 15 cases there in 20 years. Luck of the draw. After her hysterectomy, they feel the cancer is gone, but the chemo is her "insurance policy" as sarcomas have a very high rate of recurrence. She is using Gemzar and Taxotere. She had her 2nd infusion on Friday and today she is achy and feverish and my heart is aching as well. She lives alone, though has a daughter and her mom in town. But none of them have had any experience with chemo and she likes me to be here. But after 2 1/2 weeks away from home, I am longing for my own bed again, at least until my next "adventure".
Betsy, I am sorry that you have had a bump in the road. I hope this is the only bump in the whole recovery, and as others have said, at least it has happened while you are still there, and while you are at St. Charles. I hope you don't beat my record for the longest stay! haha Though mine included an optional side trip to the "Motel 6" hospital, as my husband calls it. I do hope your fever is gone tomorrow, but in the meantime, enjoy being well cared for.
Kathryn, I am sorry to hear that you are still having complications after your stage 2. I hope they can get you sorted out in LA. Otherwise, will you go back down to NOLA? You know you will get good care there.
Laura, my belly button looked the worst for the longest, but it was fine - just bad looking. Looks pretty normal now, 10 weeks out. Hard to believe that as I write it. Think I better post this and then write a second post as my netbook is acting up a bit tonight and I don't want to lose this. Please excuse any typos and spelling goofs, I am just worn out.
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Ok, some more . . . Dawn and Paula - thinking of you as you go through your chemo. Especially as I see my friend going through hers. I hope for the least possible side effects for you both.
I am still in recovery mode, as far as I am concerned. I had been having pain again a couple of weeks ago, about a week or so before I left home. So they put me back on some meds, and that seems to have helped. I have decreased them and seem to be doing ok, and I now take an Alleve in the a.m. (which seems to help with my joint pain, so it is not a bad thing) and a combo muscle relaxer/aspirin/coedine at night. I hope to d/c that when I get home and maybe just use a muscle relaxer if needed. But I won't know til I try it. It is possible that what I was having was muscle spasms, or perhaps even pain in the muscle caused by a stitch, but hopefully that will continue to resolve. It would be fine a good deal of the time, but when it hit, it hit, and the pain would be a 10/10! Not good. Now, I just mostly feel tired from too much going on up here, and of course still healing. I also feel the tightness in the tummy, but I know that will improve over time. It is pretty disconcerting though. I have been walking and doing some gentle stretching and that helps. Still, I seem to move pretty carefully. My breasts don't hurt except an occasional twinge, and they look fantastic, really. When I look at them, though, I know I need to get going and do my stage 2. It is time, emotionally, for me to have some nipples. Does that sound weird? I have a date - scheduled for September 9th. Spring, please add this date to the board! But here's the thing . . .
I still feel like I am healing from stage 1, and now stage 2 is scheduled for just 6 weeks from now. That will be 4 months from stage 1, so I know that is normal. And though I am emotionally ready to have nipples, mentally I am not sure how ready I am for another surgery. Even though it will be much less involved, I still feel so vulnerable in the abdomen, that it is hard to imagine anyone messing around down there with a canula and whatever else they are going to do to me!! And I don't know if I am physically ready, though everything seems to be normal - my BW at last check was good, not anemic, no other problems, pneumothrax is resolved, etc. So, has anyone else felt this way as they went in to stage 2? Don't get me wrong. I am going to NOLA in September. I am getting this done. But I am a bit freaked about how soon it seems to be. Maybe because I have so much else that is going on between now and then, that seems to make it come around even quicker. What can I do to get my mind wrapped around it, I wonder? Other than tell myself the good parts - the lovely people, the beautiful hospital, the good food?
And on that note, a question . . . so, I know they will lipo my upper abdomen, but what can I realistically expect do you think in terms of how much smaller will it be than it is now? I am nice and flat below my incision, but anything from the belly up looks a bit - well, put it this way, I could be due any day now. Well, maybe not that bad, but of course that area is much more prominent now that the below part is so flat. So how much smaller will I be, how much fat can Dr D realistically suck out of there? As I said, I think my breasts look really good except a small divot (sp) in the cancer side and that has been there since my MX 4 years ago, though it is improved since my DIEP. I think he might be able to inject some fat in there. So maybe my breasts won't need too much more work except for the nipples. Fingers crossed, anyway. And I will just give him the green light to do whatever he thinks - he's the artist!
One other question - I know that they only do work from the chest down, but have any of you heard of any patients requesting another Dr who they would know, to do a bit more work above the neck? I know that sounds weird, and I am a bit hesitant to put it out here, but I was recently told by my eye doc that within a few years I will probably have to consider having my upper lids done, as they (well really mostly the right one) are drooping and they will at some point interfere with my vision. The right one is especially bad now in the morning or if I go on a crying jag and already does cause me a bit of a problem. My father had terrible drooping like a basset hound by the time he was 55 or 60, and his became problematic, but he didn't live long enough to get it fixed. So I am considering checking into whether that is something that someone could come in and do at the same time so that I can avoid another anesthesia in a couple of years or less. ( I realize that insurance will not cover this, but I was told they probably won't even cover it later either, at least not without a battle) In a couple of years, I will just be that much older and more concerned about anesthesia risks. So, any thoughts/ideas? Part of me wants to just wait until it gets even worse, but then I have a day where I struggle in the morning to read the computer screen or the newspaper, and then I think I should just get it over with. The rest of my face is (knock wood) pretty unwrinkly, considering my age and the amount of stress I have had!
Ok, well now I have written a book, I guess, and I have an early morning flight home. I have been keeping all of you in my thoughts and prayers. Going through this chemo experience with my friend has been a bit tough emotionally and brought up so many thoughts and feelings, and I realize once again, just what a hard road we have all travelled, chemo or not, radiation or not. Just getting the diagnosis has changed all of our worlds. So I pray for all of you/us each night.
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Amy, so lovely to read your book while i am having coffee :^) how old are you? you look like you are in your 20-30's!! I am interested in what others reply about the bit above the belly...really, i think i carry more extra weight there than in lower belly and am very concerned about how a tummy tuck/diep is going to work for me..as you say, just how much fat can they lipo!
re your dates and going back from stage 2....why dont you just cut yourself a break and go back a month or few weeks later than booked??? there is no race here and i think you being ready for the next stage, in every way, is very important part....plus, you might think of some more things to do, or something else may become apparent..i dont feel ready for my stage 1..i feel rushed too since just come back from OS last week, various dramas, and only finished chemo 3 weeks ago...but i dont really have that choice to delay for this stage...i would if i could though!
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