NOLA in September?
Comments
-
Ashvegas thanks for the info on Earline in Asheville. I may go there if I ever need touchups later. (why is my font doing this?? aggghr!!)
Cider, that is so cool!!! Nothing like spreading the news! We love you too!!
We are now hooked up on Facebook, right?Amy, LUCKY at the beach!!!!
How are you feeling? Do you feel over the hump, even given all the anomolies??0 -
I am 5 weeks out from my stage 1 hip flap and just wanted to say - to betsy especially - no regrets. All the discomfort from my implants are gone and replaced with warm, moving breasts - not fake breasts, real - they feel real to me. I am very happy with this decision. Now the downside is, this has not been a picnic. At 5 weeks, I still have one hip drain. My production was decreasing and I was hoping to be near the end but in the last few days it has spiked back up. Dr. S thinks it is an infection and has put me back on antibiotics. I also have a wound healing issue on the bottom of my left breast, from removing the capsule where there was very thin skin. Hopefully this will heal up in time or it will be fixed at my stage 2. My left breast is much firmer than the right, another issue I hope resolves in time and, if not, can be fixed at the next stage. Even with all this, I am so happy to be implant-free. These are all short-term issues that have to be expected as a possibility with such a big surgery and they are fixable. But, in the end, I don't have to worry about cancer and I don't have to worry about the potential problems from implants. This is a win, win. I look good, I feel good and try to do as much as possible. I still tire a bit more easily than I would like, but it's only 5 weeks and this too shall change.
Betsy - I wish you the best!
Kathryn - I commiserate with your healing issues. I'm hoping to avoid an aspiration but the drains and I have not been friends through this process.
Amy - couldn't agree more. Get your reports. This is a long road and you never know when you will need to retrieve that information. Because of my pre-op chest x-ray, I found I have lung scarring. I had to go back to find the only other chest x-ray I had, back in 1998. I never thought then to ask for reports. I finally got that old report to find out the lung scarring was there back then too, but the doctor never told me about it. It's interesting to me because I was first recommended to do lump, rad and tamox. I decided to do a BMX, wanting to avoid the rads and tamox for various family reasons. Wonder if rads is a good idea for someone with lung scarring already? Glad I avoided it.
0 -
Kathryn, my tummy has been bloated and swollen for the whole 8 weeks since my DIEP. Im still wearing compression things and getting pretty sick of them. I could no more get into a pair of jeans than, well...than... bike 100 miles. Haha. ( Lots of talk on the DIEP 2011 thread about jeans). I keep putting off getting an US, because it IS getting ever so slowly better day by day. But maybe I am just prolonging the discomfort by letting my body do this the slowwwww way. I'm going to PT for other stuff and the therapist has encouraged me to massage my tummy to help get the fluid moving. It seems to help a bit. I'll be curious what you find out. If I could have bypassed these last 8 weeks of tummy misery, I'm gonna really feel stupid!
0 -
Just got back from part 1 of my doctor's visit. It's times like this you REALLY appreciate NOLA. The doctor examined my stomach and put in a request to go to the radiologist for an u/s. He's not in until 9AM (I had asked to make sure there'd be one in while I was there and they had said "yes") but he's got a biopsy at 9AM. I have an appt at 11AM but they wanted me hang around until 9AM to see if he could see me before 11AM. So basically I could sit for possibly 3 hours and wait. I came home instead and am going to call. The initial doctor also said they may decide to also do a CT scan or MRI. This just doesn't feel right. NOLA says just an u/s and if there is fluid to aspirate. Why do other places make things more complicated?
Oh yes, lots of raised eyebrows about my going out of town for surgery, wanting follow up care locally AND the fact we pulled our own drains. The sentiment was suspicion.
0 -
ref - after this AM I'd say let it go down on it's own. Mine is just so swollen and Celeste looked at the pix and said to get an u/s
jerusha - you cracked me up! I know what you mean about the jeans. Celeste said I should even dream of buying new pants for a few months since it takes that long for the swelling to go down.
0 -
Hi Ladies,
I was at the Jersey shore Amy (Mantoloking) yesterday into today... we only live a bit over an hour from there... and then Saturday we are off to northern Vermont to a resort on Lake Champlain... They have awesome food and beautiful cottages along the lake... It should be relaxing!!
Sorry to hear about healing issues... When I read that stuff it worries me, but I do have some support here... my local BS and internist will see me, and I am sure I can get the local PS to see me too (I know his wife and kids from school)...
0 -
Kathryn - yes, I have been trying to stay with the drain as long as possible to avoid exactly what you are going through. In fact, I had lost suction on the drain but was able to tape the tube in place and thread it down instead of up and that worked to restore suction. Unfortunately, I have an infection anyway, with the drain still in place. Today the drainage is back to pink-ish. Not good. Dr. S amped up the antibiotics and I hope this does the trick. Frustrating to say the least.
0 -
oh Rhonda.... sorry to hear this... otherwise, how are you?
0 -
Ref - I'm in awe of you rethreading your drain. I lost suction, called it a day and pulled it.
The radiologist and u/s tech were wonderful. The doctor didn't do a CT scan or order an MRI (as the first MD suggested he might.) He did just as I hoped he would - drained the darned thing. Turned out it was a hematoma (filled with blood), but it was old blood and had mostly liquified. He got over 100ccs - hopefully the rest will absorb. Actually, feeling a bit less tight in my stomach than before - but still swollen. He also gave me his cell phone so I don't have to go through the whole process of getting referred from the primary -- I can just call him and he'll get the approval.
Turns out we had a mutual acquaintance - Joi Morris, who wrote a wonderful book about being (or wondering if you are) BRCA+. Plus other things in common so it was a good visit. He was intrigued by NOLA and absolutely felt staying away from implants was the way to go.
Betsy - love Mantaloking. Used to go there when I was in high school. How's the water?
0 -
Water was cold and only went in up to my knees... but the air temp was super and never really got hot enough to swim. At 5:00 I thought, "oops, I never swam" then attempted but too cold.
0 -
Kathryn - I have been so worried about having a problem if I pulled the drain too soon that I made it my business to get that darn drain to work. Still ended up with a problem. Hopefully, with the new antibiotics, the production will decrease and I can pull the drain. I think Dr. S may just tell me to pull it after this course of antibiotics. One day at a time. Oh, and yes, staying away from implants is a good thing!
Betsy - Drain issues aside, I am feeling pretty good. Get tired a bit sooner than usual but just need to be careful not to overdo. Enjoy your vacation!
0 -
Betsy, glad you are enjoying the water, at least up to your knees!
Bloating in tummy. I had an U/S finally after months of bloated tummy, but I had nothing to aspirate. It just took time to come down. I think it finally started going down 5 months after stage 2 (I had plication of belly muscles in stage 2, like starting all over again!!) It does come down! It is very tiring! I hated it! Hang in there!
0 -
KATHRYN-So glad that you found a radiologist that was easy to work with. It must feel good to have that fluid out! I hope that your healing from here is brisk.
Ref-Sorry to hear about your infection. I hope that the new antibiotics knock it out.
BDavis-Hope you enjoy your vacation in VT and that it takes your mind off your surgery.
I can't tell you how helpful it is to hear about your good and not so good experiences post op. It's really helping me prepare. My surgery is just a little over 3 weeks away. I have a lot going on at work right now, preparing to be out for awhile so it's kept my mind occupied. I'm nervous but, fortunately, haven't had a lot of time to worry yet!
0 -
Hello Ladies. Wow being back at work full-time is different. I have worn a dress everyday since the procedure.
**Question...my left arm/pit is hurting arm feels tender due to a vein that seems connected to my new girls has anyone experienced this?**
0 -
Springtime...FIVE months!!!! Holy Cow! Are you KIDDING!!!!!
Went to a BBQ on the 4th and was wearing a loose little summery dress with leggings. With my spanx on, I'm maybe a bit flatter than when my tummy fat was in it's original home. I was thinking I wasnt looking tooooo bad and, since no one here knows about my surgery, was expecting the " oh, you've lost weight" response. I was even concocting my reply... " well, yes, in fact I've been working really hard at the gym, thank you" and kind of liking the ring of that. I walked into my (tact-free) hosts kitchen and she greets me, in front of everyone, with, "What, are you pregnant or something!"
Ha ha. But seriously, FIVE months.....0 -
Oh Jerusha... sorry... tact-free indeed.
0 -
Thanks Betsy. I wasn't really upset. A bit taken aback, perhaps. I think I would have been more upset pre-surgery!
Uh-oh Ro. I hope that you are not getting cording. Look up Axillary Web Syndrome and Cording and compare what you've got going on to what you read. The website "Stand-up, Speak-out " has really good information. Don't want to be alarmist or freak you out....just better to be on the safe side.0 -
Oops, Ro, it's Step Up, Speak Out
0 -
Ro - Sorry I don't remember, but did you have mast with recon? Sentinel node biopsy? Sounds like the pain I had from that. But maybe you had delayed recon and SNB way behind you?
0 -
I've been checking NOLA hotel rates for August, fully expecting them to come down (they have). They'll probably drop a little more still. But I really wanted a full kitchen without having to pay Homewood prices (currently at about $130/night). So... hooray! I found a vacation rental that's about a half mile south of the center, 1 street west of St. Charles Ave. 2 bedroom, central air, full kitchen, big TV, 200 yards from the streetcar. And cheaper than any of the rates (discount or otherwise) I've found for similar hotel suites. So, I don't have to worry about that part now. I already had a hotel res, but didn't see how I'd get by with a mini-fridge for a week.
P.S. Yes, I asked Katie to help with Homewood reservations, she punted to Dr. M's assistant, so no help there. And the center's corporate code gives me a rate of $219 online. Makes no sense.
0 -
Oh Jerusha - that is funny (and it seems you took it in stride!) Life never really gives us what we are expecting, does it?
Ro - that also sounds like what I felt post SNB. I hope that's all it is.
This AM looking slightly less bloated! Am also rubbing and massaging - seems like a good thing, right?
Spring - 5 months? Yikes! I didn't have a plication (since I didn't carry my kids), but I was hoping to do some blue jean shopping by September! How long did it take to get to where you are now - swelling wise?
0 -
My surgery has been rescheduled for 7/19 from 7/22, the center changed and paid for my new plane tickets. starting to get a little nervous about it all and the recovery. I am really not very good at that, but in the past I have been a fast healer. Cant afford to take a bunch of time off of work.
On another note, My cousin, who I know was active on these boards, but I don't know what she went by on here, and who was the first to tell me about NOLA. passed away yesterday, after just a three year fight. I am really sad about it, we were not particularly close but we shared the bond of BC.
0 -
Ro - I'm experiencing that same thing. Mine is on my cancer side and I am thinking along the same lines as Kathryn - I think it is from the nodes that were removed. That side on me is a lot more swollen than the other and has a lot more twinges and a much smaller range of motion than my other side. Just the other day I started to have a 'pinching' feeling there that would not go away (and down right hurt). It is slightly better now. Have you noticed yours being less painful at all?
0 -
IRo and JustLaura - I have to say that by 8-10 weeks I had no more pains or twinges on my SNB side. 4 months out there is no swelling or anything. I hope yours goes away soon.
0 -
Jerusha, Laura, Minnasota and Kathryn the mild pain is on the bc side. I had nodes and mast. 3 years ago. I don't have any swelling that I can tell..It just all of a sudden started to feel tender and then I felt the string/single cord feeling under my arm. Going to New Orleans for family reunion tomorrow wondering if I need to let Jen check things out while I am down there?
0 -
How lucky for you you'll be there. I'd definitely call and see if you can swing by for them to look at it.
0 -
Ro - I am no expert on this but I found that I have had numbness and tingling down my arm after each of my five surgeries. In fact, it actually began with, and was quite significant, after my stereotactic biopsy. I was pretty beaten up with that procedure and it took me weeks before the sensation returned to normal. Since my hip flap surgery 5 weeks ago, I have had some of this under my left arm but not too bad. It is barely noticeable now. You should still check out cording as a possibility and seeing Jen is a good idea. I just wanted to let you know that I have had this discomforfort and it has resolved itself in time.
0 -
Djfrro, I'm so sorry to hear about your cousin. No doubt she'd be pleased you are headed to NOLA for your surgery. It's quite normal to be nervous; it was my first surgery ever! I healed well from the surgery; just some post mastectomy pain. Keep posting for any support! If I may ask, what was your cousin's first name and where was she from?
So speaking of post mastectomy pain, I have needed physical therapy services to have progress. Post mastectomy pain is my new pain; my old, dull pain I never really addressed beyond chiro mainipulations (which gave me relief) is apparently from my hypermobility (very loose connective tissue causing my muscles all over to tighten up an compensate for body stability). The surgery was just what put me over the edge, so my whole body is being addressed and hopefully not only will I look better than before cancer, but I'll feel better! Ro, I would definitely see if you can stop by to see Jen while you are in town. She can assess you, see if it is cording, and give you some stretching exercises to relieve some of that pain and cording.
I found out some of the tingling and tightness I've felt in my arm, from pit to thumb, is not cording, but nerve something or other. My PT could tell by the way I bent my wrist so I could feel it more. Very good to know its not cording up to my thumb! But I do indeed have cording going on from my pit to my elbow. It's been diminished by my stretching exercises and does feel less painful when I stretch. My normal range of motion came back very quickly after the first PT session, but I still have a ways to go with pushing a stretch without pain. My PT also works on my belly scar, loosening that scar tissue up. My pain Doc (who sent me downstairs to PT) says getting the PT during chemo (especially the adriamicyn which can scar/restrict the connective tissues) will help me in the long run, keeping me stretched out.
If you think you could benefit from PT, you probably will. I suggest looking for a practice that specializes in post mastectomy pain, even if your mastectomy has been years ago. The pec muscles and rib muscles can tense/shorten up and cause back and shoulder muscles to compensate and on and on. The subsequent breast surgeries can jostle things up. I don't see any reason to endure additional pain when solutions are out there. (my PT really loves my NOLA story and wants to visit the practice and facility!)
0 -
Yes, the stage 2 plication I had belly bloating like forever. At about 5 months I noticed some improvement and it has slowly reduced. That surgery was Dec 2009. Dr. D said it would take 18 months (plication is not a picnic) and it has. You all who've just had stage 1 should not take this long. but beware, if you do plication in stage 2, be prepared for a long time to flat belly!! It looks very good now, but if I cycle 3 days in a row, I feel a bit of swell down there still a feeling of pooch and fullness. But that is a lot of ab work.
Ro, ask Dr. D about that when you go back down there for STage 2, or you can call and ask about it now!
DJFrro, I am sorry for your loss. BC is a friggin beast. I am just happy to be alive, I swear. One day at a time. Happy for every day!
I swear, they were talking on TV about stem cells regenerating part of someone's heart, and WHAT I WANT ARE STEM CELLS THAT REGENERATE MY LYMPH NODES!! Why can't we do this? ugh.
0 -
djffro... So sorry about your cousin... And you and I WERE on the same day and now they have moved you??so now you are two days before me... I fly in on the 19th and have my pre-op stuff on Wednesday, so I will try to stop by...
0
