NOLA in September?
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KBodie - Way to go!!! Congrats on being on the 'other side'! Just remember each day is better than the last. Today is shower day too - a WONDERFUL day!! I didn't get any binder or compression until my post-op appt, maybe that is when you will get yours.0
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One more thing...dr. Seemed certain I would have drains out before I go home. I hope this is true as those with drains must be so miserable. So far it looks like I am putting out a lot but I do love that someone else is doing all the emptying for me. Day is looking better now that I just had my arm, neck, face massage from Jen. Ahhh.
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Wow....I just speed read about 2-3 weeks worth and I am being TOTALLY selfish right now and asking for good thoughts, vibes, prayers as I get to go see the Onc today. This is always a nerve racker for me because I HAVE felt that I could get back to life and yes I have...I guess I just want what none of us will ever have...BC or not... you know PEACE/guarantee.? Honestly I'd rather be guaranteed that when it's time for me to go it's quick and not from this ridiculously still uncured BC disease.
Of course I don't say goodbye to all my friends here but like I speed read somewhere else from Nordy?there is work, life, kids(not me-but I love yours), etc...limited amount of time. PLus I changed my work shejule so that I pretty much do M-F and have evenings off and now I work out almost everyday and lately have been spending way too much time trying to get a social life......Oh girls...if you're married be so glad...online dating...Oh man I have some stories.......I think I have a book...people never cease to amaze me. It's OK tho!...you can't win if you don't play the game right!
So I get neurotic around these onc appts....and I bet some of you(or maybe ALL of you?) do as well. I took today off FMLA....Our benefits are changing big time next year and I am so glad -in a twisted sort of way- I was able to use all my sick bank and did so appropriately I might add. over the past 3 yrs....I had 20 something years of accumulated time.
Nonetheless, like the article Liz posted on FB people....the general public really have no clue. The pink fever is out in full force and sometimes I feel so cynical(days like today! When I STILL have to follow w/ the onc even tho I get confused looks and comments form people I've explained this to over and over...-"But you're done!"). Somehow I klnow you guys know where I'm coming from.
Nonetheless...It's all good. I come here to vent because when I post on FB I get these annoying trite comments from some of the same people who have the pink fever.....so I'll probably just check in and give a brief "all's well" and the people I want to understand will know.
OK, going to try and go sweat off some stress then clean up- hit UTSW and NO doubt be asked when I check in: "Are you here for a mammogram?" To which I will proudly say; "NO, and I NEVER have to have one again!"
Stephanie! Miss ya, and Nordy all you reunion gals have a great time. I'm missing another....someday! sniff sniff-ps....I LOVE the bracelets- they look so pretty and 50%..I ordered 20. Happy thursday ladies!
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Just saying thank you again to all the old, middle and new people on this thread. Your conversations are helping me be prepared for December. I truly appreciate it.
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Kbodie
wow! no binders! Thats cool. Hang in there, we are ALL pulling for you
I came here today to read the the calming wisdom of the 'been there, done that' crew... It sure helps to see/hear their stories and know some are several years out from it all.. and are doing wonderfully!! ....just think someday we will be the BT,DT crew and will help others who are embarking on this process. I wonder what the new technique is ? How is that even possible! I think I will be the only one in NOLA next week having a stage 1.
Im a boo hoo'er today, everything is setting me off. I saw a cool video of a excellent XC horse and I teared up.. lol, . I think mine is more to do with Peri than anything else.
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plainjane64 - I/we do know how you feel about those onc visits . . . just want to say I'll be wishing you the best.
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Yes, plainjane, here you can lay it out and be whatever you feel day to day, minute by minute. We're all thinking of you and wishing the best. Let us know what you find out.
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Do you guys have your hometown primary care physician do your follow up? or do you have a PS? I dont have a PS here, just my pcp, who is a nurse practitioner.
TIA
lisa
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Thanks all you new girls! It went OK. I tried to post on FB but no service(duuuh)Simmons comp cancer center...lots of rads etc. My thoughts as I sat in the waiting room w/ my pt bracelet looking feeling ok and not like a patient; First of course my chest was probably the BEST in the room!.....Nonetheless, just waiting, looking around, I felt guilty/selfish.....I guess it's a GOOD thing I'm one of the only ones w/ hair here? Don't get me wrong just REALITY and YES....I said the same thing to my onc who said in a very sincere upbeat manner:" Your cancer was so small, it was FAR from lymph node involvement... and remember >93% cure rate!".....My mantra for future visits...">93% cure rate". I learned today that after Tamox(5 years) I shouldn't have to do anything else-which was good news. I've been afraid to ask that question for 2.5 years now......Also I think when I was on here a couple weeks ago I was blabbing about taking effexor and my fam practice MD telling me since he doesn't get reimbursed they would refer me to psychiatry(Super!). My Onc graciously fixed that and electronically filled my Tamox and effexor for a year. I go for bone density(I'm 2.5 yrs in-so another 2.5 yrs to go) of Tamox....and then God willing I can say DONE and be happily living on the other side....I know....none of us knows....so much of this -LIFE-is a crapshoot...There will always be something! And my favorite quote from 'Letters to Juliet'.....Life IS the messy bits! At any rate you all reain in my thoughts and prayers and i SO appreciate being able to come here and vent. Next appt April-I'm every 6 mos (from beginning of Tamoxifen). Labs now annually-they were fine today and she agreed....last time I had some crummy ones because they were done during the holidays...Actually had a series of weird results.......SOooo they won't be drawn during the holidays again. OK, so, breathing better. Thanks for not making fun of me or belittling my little problems girls...It means the world....seriously....Love you all
Oh and in response to a couple of things I read above. you don't HAVE to have a hometown MD BUT it really is to your benefit. Also after my stage 2 I think I didn't drive for almost a week...but I was an oddball and had a tougher time w/ stage 2 than stage 1...everyone is different.
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Lisa645, Its hard to predict what you might need. You very well may need NOTHING! Also depends on the range of expertise of your NP. You might need small stuff like drains pulled, (if you don't want to do them yourself...which I did not!), or sutures snipped. You could ask ahead about that. Some NPs would do that, some not. Or you could have bigger stuff like a wound healing problem or infection or seromas that need aspirating. The center will stay in close contact with you and if it is a really big problem, will fly you back. They will treat a lot of stuff long distance-- changing your antibiotics around, etc. Personally, I feel that an internist or family practice doc or NP does not usually have surgical expertise. I didn't have any post-op problems at all, but asked a general surgeon ahead if he'd mind if I called. I went to him to have a drain pulled and felt reassured by asking if everything looked alright -- belly and breasts. I thought that it would be uncomfortable to go to a local PS as I'd obviously chosen to not go to them for the surgery! These procedures involve big bucks, and for someone who may only get to do a few a year, can be seen as a big $$ loss. Not to mention, affront to the ego! I had my initial MXS and TEs and then implant surgery out of town. I'd consulted with the local PSs first though. Later, I needed to ask them to do the "fills" during tissue expansion. They were gracious, but I felt very uncomfortable about it. A general surgeon would never do these reconstruction procedures, so there is no turf issue. A breast surgeon would be OK also-- they have the general surgery experience before specializing in breast -- but would not likely ever do the reconstructions.
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Plainjane. Yay for the good visit! Mammogram day used to be the worst day of the year for me. Now it's the onc visits!
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Lisa... I asked ahead also, but in the end pulled my own drains (me, not my husband) and also the sutures at both the hips and below the belly button... as long as I could see it, without using a mirror, I did it myself... the drain pulling was painless and took about 2 seconds, so I didn't want to waste a drive to the doctor and the copay... but I can understand asking for the help if that's your preference... My husband pulled one drain (from my breast) and left thread behind... I thought I felt something and instead of asking my husband (who was a bit freaked out by the process) I asked my Primary if there was thread hanging out of me when I was in seeing him for something else...
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Surfa Grl - I am also having emotional ups and downs. Up at the moment but it is not hard that to get to a down. I was watching TV last night and a woman jogged by across the back of the screen and I said "look at her - she gets to run!". And started crying because I walk like a 1000 year old woman right now. I know that I will be running once again (Nov 1 is 6 weeks post-op) but it seems a long way away right now.
Dana - you have such a great warm heart and are so kind. I will be forever grateful for all your support in getting me to NOLA. Please take care of yourself with some of that great nurturing you can do. You have been through so much this year.
My news is getting comfortably through the night without narcotic pain meds for the first time and generally feeling much recovered from my UTI. Now just working on the surgical recovery, which is a lot better without being sick at the same time. Trying to get back to where I was with walking before the UTI struck. That will take patience. One drain remains and today it is up. Arrgh. A watched drain never slows, right?0 -
Thanks all. For the infor that I am not losing my mind with the "blues" (unfortunately, not NOLA style music!) and that the lengthy irritation with the drains and "girdle" are common. Nice to know I am in such great company. If I am this nuts 6 weeks out of Stage 1, what will I be like with Stage 2? Horrors!
I find the discussion about lipo and insurance very enlightening as I am now waiting for Jeanine to let me know if the insurance company will accept Stage 2. Apparently, they have "cut" the check for Stage 1, but we are all waiting for it to come in. Docs have been paid. I am hoping against hope, I guess, that they will approve Stage 2 for 12/20 with some lipo -- I want inner thighs and would love to finally have knees. Am really tired of legs that look like they were meant to hold up a grand piano, not the small top I have (I am a pear -- you guessed that!).
@Betsy -- How you hangin', girl? Sounds like things are finally going smoother for you! Very happy to hear that.
@All -- Yep, I have loved NOLA for more than 30 years. Family live right outside the city limits. Cannot say that the standards on Bourbon Street are back to pre-Katrina standards. It seems like the musicians didn't return. Sad. But I love praying in the cathedral in Jackson Square, the patter of the street scammers, and, of course, eating myself silly!! Yet I lost weight and am working on some more.
@All -- There is a special place in a VERY hot place for insurance companies. Bless Vicki and Co. for their knowledge and tenacity. Basically told me to butt out and they would handle things ... and they did! Gotta meet these ladies next time in!!
Am fighting the depression, and, interestingly enough, I too find that it is worse at night. After a long day at work, it is very hard to stay positive ... not about the healing or NOLA or Dr. D., but about life in general. Did anyone else find that cancer has totally thrown a spanner in the works and there are major life changes? 'Course, I am 63, older than most, so perhaps it is just the inevitable adjustment.
So, my nightly glass of wine and to bed. So glad you are all here...the ladies who started the whole forum, those who have come and gone and come again, and those I newly met (some in person) thru the CRBS!!
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PJ!!! YAY for great news!! that is heartwarming to hear. I bet you have a great nights sleep tonight.
Running~ I cant wait for you to get to RUN FOR JOY!!! woot!
THank you ALL for letting me know regarding a local doc. My husband thinks I should be under the care of the BS I saw 2 months ago...problem is that BS recommended a HAND surgeon to do my recon... telling me oh hes a micro surgeon and a recon surgeon, well he wanted to do implants....or he could do a ' diep' but it would take a small 2 inch square of muscle... I told him: ummm dude, thats not a diep....needless to say we did not hit it off. lol
I talk with my awesome NP tomorrow and tell her whats going on and ask her who I need to have watching over me and communicating with NOLA.
Dana. Celtic. Running, Kbodie, Semper and EVERYONE:
Tonight when I go outside and look at the stars, my thoughts will be on all of you.
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Wow, you all are a prolific bunch, you are! I could not read everyone in detail, but Eve, you asked to have the Donn Tatto part removed from your entry in the list, so I did that. If anybody asked me to do anything else I missed it!
PJ - it sounds so good, like you are almost through the tunnel!! Happy for you...
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Lisa645,
In terms of a local doc to be back up when you return from NOLA - here is what I did. I am a little more than 2 weeks past stage I and have not used anyone local yet. I had a unilateral DIEP a few years ago in my hometown. It did not go smoothly and required many revisions. Toward the end I switched ps and went to someone at a major medical center in my hometown to finish things off. I talked to this ps and told him I had decided to go to NOLA for GAP surgery. (He does a lot of DIEPS but only about 15 GAPS/year, in NOLA they probably due a couple of hundred). I asked him if he would be comfortable being my back up and helping me out if I wanted drains pulled or ended up dealing with an infection or something serious when I returned home. He told me he would be happy to help and that the docs at NOLA were very, very skilled. He reinforced my choice. I also asked my local bs if she would be willing to help pull drains and again the response was yes. If you are dealing with reasonable local people I think I don't think there is a problem asking him/her to help. If they say no you can just move on. I felt having someone local who has experience in microvascular reconstruction at a major teaching hospital as a back up was a safe move. An internist or a PA in a internist's office was not my first first choice - I don't think they have the skill set I might need if I really got into trouble. At this point my feeling is I will pull the drain myself - it doesn't sound that difficult.
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again playing devil's advocate... I live in a big city and had zero luck getting a doctor to do aftercare here. I asked at least a dozen doctors, some my own, some I had just consulted with, some total strangers who were recommended by someone I knew. The plastic surgeons wouldn't touch me because they don't like to treat other surgeon's patients. The breast surgeons said no, no reason. The internists said "outside the scope of my practice". And I made the rounds with requests with both my stage 1 surgeries.
With both stage 1's I ended up going to a wound care clinic for help for small areas of my incision that opened up. Ironically, the one I'm seeing now is at a small, fairly poor city hospital. They treat mostly people without insurance, lots of elderly. And they've given me really good care. I had to see an internist I don't normally see to get help with stomach issues from the antibiotics. My own PCP had said outright she wouldn't treat me in relation to the surgery.
I know not everyone has trouble finding help, but if you're in a big city be prepared to get turned down a lot. Big chips on shoulders here.
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Wow, Jeskachi, what a different experience you had. I don'[t know whose experience is the norm. My doctors are in DC so I am not in a small town. Maybe the difference is that the plastic surgeon and breast surgeon who offered to help were my doctors already and I knew they were reasonable people. The plastic surgeon is a nice, relaxed low key guy and is at a big teaching hospital - he publishes often in journals so is well known in the field but no big chip on his shoulder.
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I've heard of other women in Chicago who have had the same issues, so maybe it's just a Chicago thing.
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Maybe its big cities and small cities, but not the in-between ones! I did not feel right asking the PS who I had chosen NOT to have do my surgery. My BS and first PS were in NYC, but I can bet they would have said no. Not that I'd ever let them touch me again! . Besa, sounds like your docs do plenty of microsurgery and understand the expertise of the NOLA docs, and don't worry about losing the business. I have gotten most of my care out of town, and practically all of my local doctors seem affronted by it.
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Plain Jane - It's GREAT to see your posts again! I have always appreciated reading about your feelings during this process - I love the long, thoughtful posts. Please don't ever feel you need to minimize how important your concerns and worries are. You're right - you can always come here and we will totally understand!
Re: having back-up docs in town: I was also lucky to have several plastic surgeons that practice together who were happy to see me to pull drains and do a small aspiration. I also went there for some laser treatment of the breast scars. And I also had seen them originally for possible reconstruction, but then decided to go to New Orleans. They were actually very interested to see my results and asked if it was okay to have others come in and see. The newest and youngest surgeon who had just joined the practice to do DIEPs looked at my results and said, "Something to aspire to." So it all depends on how secure the docs are who you ask, IMO. If they won't agree to help you, you don't want them. For my second breast recon, my husband pulled my drains. It is no big deal, as long as you are sure to snip those sutures and make sure to break the suction before you pull. You can get detailed directions from the Center. If you do have any other complications, you can just consult with the Center, send photos if necessary, and if that doesn't help, they will fly you back to New Orleans. They're used to dealing with folks from out of town, so try not to think too much about scary scenarios that likely won't happen.
So I wrote a section on depression after/during breast cancer treatment/recon for the Breastoration website. The site is not completed yet, but here is the link to that topic. I thought it was important because so many women experience this (as did I - majorly - after stage 2 of my first recon), but I don't think there's a lot of awareness of this. Hope it helps. Let me know if you have anything you think I should change or add or delete about the topic, okay?
http://www.breast-cancer-pink-ribbon.com/depression-after-breast-reconstruction.html
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I forgot to post earlier that Dana and I had heard from Semper and she is doing very well post-surgery. I think she is officially a member of the "We love the NOLA nurses" league.
So it is 430 am and I have been awake for a couple of hours. Just can't get comfortable. Ah well. Wishing good sleep and happy healing to all my sisters out there.0 -
Good luck today Maggie.
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Running I can see how you long for running as it is hard to imagine this body doing anything like it used to do, running, swimming, yoga. And that makes me sad.
I have no one lined up at home as the NOLA team seemed to think it would be unnecessary. I hope that rings true.
So it looks like I will be given the choice as to whether to leave today or not. I still don't get around well and am pushing that call button whenever the pain meds wear off. Had a bad night last nightl thought I was gettig an infection, felt feverish, achy, heavy-headed, heart pounding. An boom, 4 nurses were in my room, hopping to it, doing an EKG, taking temp and blood pressure, giving me this med and that med and then I crashed out and felt better when I woke up. It is hard to leave their care when they do it so well and when I haven't shown much ability to function on my own. Should I stay or should I go now?0 -
I am back-reading some comments here that came while I was in surgery and after. Lots of ups and downs among the lot of us. And I find that reassuring because most people are keen on moving on. As far as friends and family outside this circle. But I can't imagine this not consuming every hour of my days for a very long time. I'm sorry dana that you have it weighing heavily on you. I have found your insight so helpful and honest. But if you ever need to break off for a time, we would all understand and wish the best for you. You can't take care of yourself and everyone else. I am very thankful having met all of you so that I know each new things I feel or fear has been felt or feared by someone before. It's like I went to all this trouble to find the best surgeons in the world for this and then found that with them comes this inner circle of support likely not found anywhere else. See why I hesitate to leave this cocoon today? I could stay here with these nurses, doctors, my husband, and you all on my iPad and feel like it's going to be ok!
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KBodie - I think you should stay. If you had a team of nurses caring for you last night and were feeling really not well, I think that you should give yourself another day under their care. Many women have chosen or asked to stay another day. The day I was supposed to leave, I really wasn't feeling up to it and the next day I was eager to go. It's amazing what a difference a day can make sometimes! Be gentle to yourself.
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You guys, this is on TV on Monday nite. I think it looks like it may be well done - tho we will probably have a good, hard cry - but sometimes that's makes you feel better after....
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Ladies - I need your guidance. When I had my BMX back in April (in the Kansas City area) my plastic surgeon told me I didn't have enough fat for DIEP. I had an aggressive cancer and there was no time to lose, so I agreed to proceed with TEs. I am now 1500 miles to the east in NH and 12 pounds lighter, and my PS at Brigham & Women's says that I do have enough for B cups...that is the good news. The bad news is that I must do radiation and she will NOT perform the surgery until 6 months after I finish radiation, which would mean next June. And it would be the third summer in a row being in some kind of breast cancer treatment. I started in June 2010 with stage 1, had lumpectomy and Mammosite rads, had a recurrence diagnosed at the end of March 2011, did chemo this summer (finished 9/28).
Does anyone know if NOLA would do DIEP before rads? It would shorten the "finish line" by a good six months, and at this point I'll do anything within reason to get this over with, but not at the risk of a failed procedure.
Did anyone have DIEP just before radiation?
Thank you for any help,
Michelle
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Kbodie,
I think toomuch is absolutely right. Stay in the hospital for a while longer. You are not feeling well. You are receiving wonderful nursing care and have doctors backing that up. You feel protected and safe in the hospital (and you are).Why move to a hotel if you don't feel up to it. A day or two of additional care can make a huge difference.
In terms of back up doctors at home. It may be totally unnecessary. It was easy for me to put in place so I did- just added insurance. (I taked to my hometown doctors when I had my routine appointments.) I woud have still chosen to go to NOLA without the backup in place.
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