NOLA in September?
Comments
-
Kathryn - so sorry about the extra discomfort. I also have had 3 rounds of antibiotics in the 6 weeks since my stage 1 and they can be quite harsh on your system. If you are not already, I would recommend that you take acidophilus (a probiotic) to help with potential side effects (intestinal issues, yeast infections). Don't take it at the same time as the antibiotic but rather a few hours after. It makes a big difference. I hope you are feeling better soon.
I decided to take my drain out today. I am wrapped super tight and keeping my fingers crossed!
0 -
Anyone interested in being my caretaker if I decide to do a stage 2B in October? Anyone? Ferris? Buehler? Anyone? LOLOLOL
0 -
ref - thanks for the suggestion - I actually take acidophilus every day since I was prone to yeast infections. Although without my ovaries there doesn't seem to be much activity "down there" so maybe I won't be getting as many without all the hormones in my body.
Definitely not looking forward to the antibiotics but I now have another reason...
I heard back from Laura regarding the heating pad - they don't recommend it because our skin sensations are diminished while we heal and we can burn ourselves with a heating pad. I opened the email about 10 minutes after showering and changing my compresion garment and guess what? I burned myself last night with the heating pad. So much for using my best judgement and not waiting for an answer! Thinking healing thoughts for myself and all the other's who are post stage 1, 2, 2b, etc!
0 -
Oh. H*lls bells Katherine. I had forgotten all about having decreased sensation (I am now glad that I asked what Celeste said about it instead of recommending whole heartedly!). Funny, we had had this conversation somewhere in here before, and I remembered decreased sensation as a precaution/contraindication then. Maybe that was back when I still had my ovaries and a brain with it? Although, when I was thinking heat - I was thinking warm compresses not a heating pad that you plug in, just a warm moist towel. I am so sorry that you got a burn from it. Silvadene cream helps a lot with burns - are you blistering from it? Ask the Center if they think it would help if you are and have them call it in for you. I don't know these days if it is OTC or not.0
-
Thanks Nordy. I think my lack of ovaries allowed me to keep that warm, wonderful heating pad on my stomach way too long and way too hot. Can't tell if I'm blistering because my stomach is such a mess - black and blue, red, swollen. I think tonight when I get changed or tomorrow when I undress to shower will tell more. Kind of dreading looking at it and it's been hurting all day under the compression garment. Tonight some neosporin maybe the silvadene cream tomorrow. I'll email the center on Monday once I see what is going on. Never a dull moment! Thanks for the input.0
-
I'm off.
0 -
Kathryn - Now you are having complications on your complications on your complications! Good grief! You need a break in a big way! I hope that NOLA is able to break you out of this pattern. My thoughts are with you!0
-
hello ladies...just back in last night from trip to italy( sublime!!) four days post my last chemo.. not only did i survive, but I also thrived... ate and drank way too much chianti but at least i also swam my laps every day in our pool and rode bikes around the town , hiked gorges etc.. ...have had no internet access so there is much for me to read over and catch up on -and cant believe Kathryn you are still having complications - anyway, big few weeks in front of me now to get imaging, and get sorted for upcoming surgery on august 9th...on tues get brca testing back, and if this was positive then surgery would be changing to bilateral...think i might end up spending today on computer just catching up on my email~! rosemary
0 -
Upcoming!!
DJFroo said above, "I'm OFF">......headed to NOLA!!!
July 19 - DJFroo - Stage 1 (?), NOLA. July 21 - Bdavis - Stage 1 with Dr. D. & Dr. Sullivan., NOLA (Dr Stolier will be my BS and Dr D is the lead dr with Dr S as the asst.)0 -
Debby... good luck Tuesday; keep us posted and I will try to catch you on Wednesday while getting my tests and pre-op stuff...
0 -
DJFroo - good luck!
Louis13 - Italy is my favorite place in the world. Your trip sounds sublime. Hopefully next summer for me and my family
Betsy - thinking of you, I know you're nervous but soon it will all be behind you...and believe me, it's a huge relief.
JustLaura - I know, this is ridiculous. Nothing earthshattering but I need a reprieve. Hopefully my trip back east will break the pattern.
0 -
Thanks Kathryn... You will be better soon too... It has been a long summer for you already I know.
0 -
bdavis, I have followed your saga (along with my own, ie RADs vs No RADs, etc). I wish you a fast and easy recovery from your surgery this week.
0 -
Good luck to DJFroo and Betsy!
0 -
Thanks Christine... I am nervous for sure. its a bit surreal... hard to believe that this past week I was golfing, swimming, gardening etc and next week I will be in a ton of pain... a little hard to wrap my head around that... and know that its self induced... something I opted for over radiation... I need to remind myself that rads wouldn't necessarily be a walk in the park.
0 -
Betsy you will not be in a ton of pain. They do a great job managing that. Really. True that you won't be able to do this activities again for a while but hopefully the benefit will far outweigh that. Hopefully your nervousness will go away also. Mine did. As soon as I got there and to my pre-op appts I felt a sense of calm and that stayed with me right through until they took me in for surgery. I hope the same for you.
0 -
bdavis, I think it is normal to be nervous, its a big surgery. You may be suprised that the pain is not as bad as you think (just like different experience with chemo). I hardly had any pain after my BMX and had implant exchange last week(no pain, just sore), not that this compares to what you are having. Good attitude is over half the battle and you have that. Before you know it you will be back out doing the things you want to do.
0 -
Thanks ladies.... It is indeed reassuring to hear it from those who have been there before me.
0 -
I honestly didn't have any pain...but I did have discomfort. I also think there's worry about messing something up and moving the wrong way, rolling over when you sleep, etc. In general I think is pretty hard to mess things up. As everyone says - stay in front of the pain. Don't wait to feel it. With stage 2 I was only on drugs for 2 days, but for stage 1 I'd say it was about 2 weeks - 2 1/2 weeks. I cut back but I was still on them at least at night.
You'll do great and we're all here for you!
0 -
Betsy, I agree with Kathryn that it's more discomfort than pain. You just move a lot slower. Most importantly, you are in the best of hands. Hang in there!
0 -
Thanks... and Rhonda, how are you today?? Drainless, right??
0 -
Yes I am! I took out the drain on Sat. Put a pad over the drain site, put on Spanx and then wrapped an Ace bandage around all that. So far, so good!
0 -
I am going to chime in and agree that the pain is not all that bad! Really! The On-Q balls work onders and they really stay on top of everything. Besides that - the first 24 hours (for me anyway) was just a dream... I was so out there! If they give you the choice between morphine and dilaudid - I vote for the dilaudid in your PCA (pain pump)! Oh, okay, it does kind of put you in lala land, but morphine does absolutely nothing for me (besides make me constipated... lol, but that is a whole other story), so I was super happy with the dilaudid... but we are all different!
2T - that would be a blast! I am just trying to figure things out because there is another procedure I want to undergo in California... just can't decide what I want to do first. Anyway, if I do have the stage 2B in NOLA - it would be right before or right after the Komen run/walk/reunion. Also, I have to save some $$ because my insurance will not pay for a 2b... argh. I will let you know when I know more. How soon would you need to know?! I don't have the issue with flying - I LOVE to fly! It's so beautiful up there!
dj - You are in the best hands. Really. I know that Robyn would agree. Have a great appointment tomorrow - all will be well.
Betsy. You will be GREAT. I know the dilemma that rads causes... I am in the same boat as Spring... we radiated everything - axilla, chest wall, clavicular nodes. I don't know if I would do it again knowing what I know now and having the lymphedema. Maybe I would have forgone the clavicular nodes? I think I would still have gone for rads because I wanted to stay cancer free... and so far, so good. But, it is so personal. Hang in there. If you do decide you want/need rads, they will work to adjust your flap. But again, as Spring said, my rads side is not quite the same as the prophylactic side. In my case, it is bigger and slightly more square-ish, if that makes sense. I still love it, but when I am naked I think it could use some adjusting. Good thing I am not naked that often! With clothes and a bra - it looks pretty good!
0 -
Betsy - because I wasn't sure if I would need rads until after mx, Dr D worked that into the breast (he filled it more than the other side..so at stage 2 if any tissue was damaged he could remove) but for you..would you have to have rads b4 mx?? not sure of window between chemo & rads? I have an appt with RO tomorrow to discuss my need. I was told by my MO that 1-3 nodes I wouldn't need..then he changed his tune so I decided that I didn't want to wait until the end of my chemo (having 3rd AC wed) to find out if I will need them. We had a wonderful family vac planned for Aug with my BIL and his family and thank you chemo for screwing that up..so I want to take the kids away the end of Oct and hoping that will be okay..it will put me at 6wks after chemo to start rads if needed....just want this to be over..so I can go back to my boring life..haha
0 -
Nordy,
I know we have not formally met, but I plan to be in NOLA in Oct for the reunion. I would be so happy to be your care giver. I might even schedule my tattoos then.
My brothers live-in NOLA so I don't have a problem with how long I stay. I could stay with you as long as needed.
Bettye0 -
Hi Ladies,
Just a follow up about our discussion about rib resection and DIEP 1 vs. DIEP 2--I find this stuff fascinating so I wanted to share what I learned. I got my surgical report last week and it specified rib resection so I called NOLA to talk to them about it and I just got off the phone with Laura (Dr. D's assistant) who was able to answer all my questions. I told her about the board and how we were all "geeking out" over our surgical reports and she thought it was awesome that we were so interested and asking all these questions. So here's what I gathered:
As we suspected it's not actually rib resection but costal cartilage resection and it's usually done around the 4th or 5th rib. It's usually a very small opening, about 1 cm x 1 cm and it is not
replaced as they bring the inframammary arteries through that opening.Laura told me that the DIEP 1 vs. DIEP 2 is a classification they just started doing and she said it doesn't have anything to do with the inframammary artery/rib resection but with where they cut the DIEP artery in the abdomen. She said some people have multiple branches of the DIEP artery and that specifies which branch was taken. She said they only started specifying this in the surgical reports recently so even mine from my surgery on 5/4 doesn't make this specification. She said that every patient she knows of from the center had has the costal cartilage resection as
there would be only 2 reasons she can think of why they wouldn't do it (she said she saw this at the last practice she was at but not at SCSH) Those two reasons would be if there had been
previous bypass surgery so that artery was unavailable and at that point they would hook up to the axillary artery under the armpit. The other reason she said was that some practice, not NOLA, but others cut through the intercostal muscles rather than the costal cartilage to access
the artery but she said they don't like to cut muscles at all if they don't have to.Another cool thing she pointed out was that if any of us needed bypass surgery at a later date we could have it and that artery could be cut as needed. She said once it hooks up arterial anastomosis occurs which brings blood flow to the flap from all the surrounding vessels. She said this is complete about 1 month after the stage 1 surgery but of course they would wait longer if possible before cutting that artery. But in the case of emergency, good to know! She also said
it was possible for someone listening to our hearts to be right over that area and to hear it stronger above that 1 cm x 1cm cut, but she also said that what they might be hearing is the blood flow through that artery since its closer to the surface. She said on some patients, very few but some who are very thin, that they can actually see the hole in the costal cartilage so they do a little fat grafting in stage 2 and then it's gone. Cool stuff! If anyone thinks of any other questions she said she is happy to answer them.0 -
I'm not very thin, but I can feel the space and see it too. I had fat grafting at stage 2. I guess I'm one of the lucky people that the fat dissolves. Not very pretty. I may have to go back and let Dr. D take a look!
0 -
Interesting BettyeE - Laura said they are more than happy to correct it. Did they graft fat specifically in that area? I can't seem to feel or see mine...I guess I have plenty of padding!
0 -
Hi Dawn,
I was able to speak with both my MO and RO today and they said that with the micromet, it is like node negative as far as radiation goes... so I am glad I asked and feel better now.
Denoument... thank you for the explanation,,, all good info to know.
0 -
Betsy - that is GREAT news! Hurray for no RADs!!!!
Denoument - Good work!
Bettye- It is so awesome to see you posting! I hope you are feeling well! I am unsure/undecided about a stage 2b. It is going to cost me and I don't know if I want to wait and see what happens to insurance next year (the company that my hubby works for changes their insurance every year). The company they are with right now is AWEFUL. When we were in NY two weeks ago, I had to take my 3 yr old to the walk-in clinic for a suspected ear infection... of course they did not take my insurance and we had to pay out of pocket... Okay, so that was the least of my expenses, because then the MD grounded us secondary to her ear drum bulging and fear of it bursting during flight... $1000 in change fees, car rental extension and extra nights at the kennel for my dog... so that we could fly 2 days later. Ugh! But better than a burst ear drum, by far. My poor baby!
0
