NOLA in September?
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Wow, go away for the weekend and come back to this. So sorry everyone who thought I was sending someone away from NOLA. I sure wouldn't do that since I post elsewhere that they should look into NOLA as a highly recommended facility. It was on the top of my list but wasn't meant to be because of timing and distance for me. My point was that they should let the Drs. staff handle the insurance issues, they are the pros. I also agree, one should definitely use a PS who specializes in FLAP surgery and would not recommend otherwise. So sorry again for any misunderstanding.
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Way to go Jerusha! That seems like a long day with the emotions mixed in - and you did it!! I hope that today goes well for you too!
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Congratulations Jerusha. I know that it's with mixed feelings athat you send them off into the world - but I'm sure you've done a great job of preparing them. Who wouldn't shed a few (or a lot!) of tears.
Hoping day 1 at work is a breeze for you. So glad to hear you're healing so quickly.
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I was wondering if you all went to a doctor at home to have your stitches removed from your breast area? I know they told me to pull the ends of the stitches at my hips and cut them. I emailed jeanine who told me that they don't disolve on their own and I would have to have dr take them out.. I'm just so over protective and don't want any old doctor touching near my flap..plz let me know what you all think..thanks...
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What? This is news to me. I thought all of my stitches were the ones that dissolve eventually on their own.
I will call tomorrow to find out what I have.
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News to me too. I've never had any stitches taken out at home. I only went to my awesome breast surgeon at home to show her the work that Dr S had done. While I was there she checked where my hip drains had been pulled. She did take out a piece of stitching out that was hanging in there.
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My breast sticthes dissolved on their own.
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I finally bit the bullet and went to an oncologist today. Dr. Stollier had told me I was done once he got the path report - said no chemo, rads or tamoxofin. Then in my cancer support group they were all shocked I hadn't seen anyone and insisted I was going to need chemo, rads or tamoxofin...so I went today. And good news - no chemo, no rads, no hormone blocker. Very relieved.
Also, this is the first doctor who's seen my breast post-Stage 1. He said that they were the best he'd ever seen and that NOLA does exceptional work. He's had a few other patients go there and asked if they did the flaps differently than other doctors since their results are superior. I said, I didn't know what they did differently but I thought they were truly artists. He agreed. I had my friend with me at the appt who is thinking of going to NOLA (but I'm sure I always seem like a crazy zealot when I talk about them) and she said the oncologist was the best ad for them yet!
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My stitches, both breast and abdomen all dissolved on their own except for the ends that stuck out a bit at each end site. Just a quick tug on the breast one and one side of the abs and the stitch feel out. On the other side of my ab the stitch is still there and it doesn't want to simply tug out. I'm not really worried about that as it is dead-center in the middle of my "dog ear" so I know that whole area will be revised at stage 2. I'm going to see my doc in a week and I'll see what she says, but I don't see why it can't just stay there until it falls out on its own. Good luck!
Kathryn - this is great news, congrats! I'm also a crazy NOLA zealot and speaking on Sunday at a Bright Pink gathering on my NOLA experience as well as meeting 2 other women from my area on Thursday to tell them all about NOLA. Hoping to covert some people and send them down south for the royal treatment!
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dsnydawn - All my sutures were dissolvable. I think you should double check... maybe triple check... LOL
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well its just the ends...and on my breast I had flap which is about the size of silver dollar (used to be nipple haha) and than that meets incision that goes down ,that is where the points are sticking out..but I also have a scar which was from my lumpectomy that dr d cut out and made new scar (something about wanting to get rid of any contaimination) so on that scar i have stitches, well on one side that need to be trimmed...just got email and is ok for my hubby to do..but i will call her in am about the pointy ones near my flap...just afraid to screw with any of it....
Will be getting my port put in next wednesday. I actually saw it at the drs office today and was kind of relieved I thought it was a large plastic thing that went into my vein...still sucks, but better that blowing out my veins..and I have an appt with MO office this wed to go over with the nurses, how my chemo will go and I guess to schedule it....was also told at end of my chemo i will need to see RO to determine if rads needed (i was told if less that 4 nodes would avoid) but guess it is procedure I have to go through and if needed will do
Oh Dragon...like your new picture!!!
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Day 5 post-op and was worried about one of my hip drains that stopped producing any output for more than 24 hours. I took walks during the day, waited overnight, nothing. So arranged to see Dr. S for my post op on Mon instead of Tues. One hour before my appt on Mon the drain spontaneously began again. It was very odd. Dr. S said it happens sometimes but since my incisions went all the way around the back, the extra drainage may have been taken up on the other side. Fortunately, all is well and both drains are functioning properly now.
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Rhonda... glad to hear you are doing well... its nice to hear success stories from those who go before me
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Thanks dsnydawn
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Thank you so much for the support, ladies. You are dear, dear friends! Being at work was hard, but I am now happily re- united with my comfy bed and do not have to go back to my office till Wednesday. I am SO looking forward to a day of being a slug!
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Regarding taking out sutures, the knots on the end of the incisions will eventually dissolve on the inside then fall off on the outside, but I think lots of people trim them because they get sick of them! It's super easy--you just grab the knot with a tweezer. Sometimes it comes out with a small tug but if not just cut the suture below the knot with a small pair of scissors.
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Jerusha... Glad you are back home resting, and have another day to rest before you are back at it
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Ro, did you get to pull that last crain yet? hoping for the best!
Kathryn, Congratulations! Do you feel a huge weight off?
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Congratulations Kathryn - that is wonderful!! Such awesome news for you!
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I snipped a few sutures today. I'm leaving a couple more alone. I start chemo Wed. I don't have a port yet, but my MO doesn't want to hold up starting chemo. I'll get the port after the first infusion. I really don't know what is going on, other than I meet with my MO and then start chemo. They'll tell me as I go along! I haven't seen anything, met with anyone besides my MO, etc. I just know I'll bring my huge water cup thing and drink a lot of water the next 3 days. I've been looking at head coverings online and I think I've got it narrowed down.
I called my LE therapist today to ask her a question. It was the first time I called and she knew me right away. I said I was surprised she remembered me and she said she remembers all her clients. That made my cry! I was all choked up trying to ask my question. She's SO sweet and her name is Jen, too. I was very weepy today so I walked up a storm! I think I walked 5 1/2 miles total, going out two separate times. It makes me feel better.
Jerusha, good for you! Enjoy your Tuesday.
Ref, very interesting about the drain. I'm sure it was alarming!
Kathryn, great news.
The lower outside of my cancer side flap feels hard. More firm than the other parts of the breast and than the other side, but not rock hard. It's difficult for me to figure out because it's numb (of course) and it was not shaped nearly as well as my other side. I'm trying not to worry about it (necrosis?) because whatever it is will be resolved later. Good color and still warm. Well, since my breasts are still about an F cup (I sized them in my old bra), the most projecting areas do get cool in the air conditioning; same as how I'll touch my arms and they feel cool.
I plucked some hairs that were growing around my areola. I don't think it was new growth. I left them before surgery to see if they'd still be there. Well, I could feel the tweezing! Cool!
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I had a section on the outside of my left breast (the cancer and radiated side) that was hard it was a strip about 1/2 inch wide along the edge. When I went for stage 2, that breast was slightly larger so I just asked him to cut out that hard tissue/skin to reduce the left side. It worked out great!
I did my first chemo with no port. It was painful but tolerable, more of a burning sensation almost and the needle is quite large. I hope I'm not scaring you but I'd hate for you to be totally surprised. It was only at the first part of the treatment that it did that to me. I had no side effects and felt great, I totally expected the worst from it! You're going to do great!!! XO
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Dragonfly, you aren't scaring me! It's very helpful to know a bit more. I get scared more by the unknown. Unless I know the known is scary...! Yeah, I've heard about the burning but not the big needle. The port scared me until I read more about it. So I'll be happy once I get my port. I cannot look at needles going into my skin or in my skin. I'm riding on faith right now!
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I did my first chemo without a port also... You will do just fine! The fatigue was the worst part for me!
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Hooray Bettye! I hope you did go out and celebrate! Thanks for sharing your news with us.
Jerusha - congratulations on your daughters' graduations, and for getting through it! I'm glad you could be there. Maybe I'll borrow your "It's their day" mantra to stop my blubbering on my daughter's first day of kindergarten in a couple years.
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Springtime I went to Nola and had 1 drain removed today!!!! Feeling so much better. Thanks for checking... No many drains are used at stage 2?
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Spring, Laura, Cider - thanks so much. I feel immensely relieved. Sometimes you don't even know things are weighing upon you and when they're lifted you feel relief. That's where I'm at. I also feel like I now go to all of these appointments as a pessimist (unfortunately it's often confirmed and it's not how I used to be) and end up with negative news (like cancer, the septated cyst, the oophorectomy, etc.) - so it was so nice to go in and not get doom and gloom. That said, he wants the actual NOLA CT scan disc to show to a radiologist just to make sure the blips are nothing to be concerned about...plus he wants a blood panel, lipids, a baseline MRI, and few other odds and ends. But the thing I was most concerned about was whether or not he'd want hormone blockers in additional to everything else -- but he didn't YAY! No stopping me now, NOLA here I come!
Congratulations Ro! Getting those drains out is THE BEST feeling!
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Paula, I did all my chemos without a port. Can't say that I recommend that, just want you to know that one will be perfectly do-able, I'm sure. And yes, tons of water that first three days. Can't stress that enough - you have to flush the chemicals through your system and want to keep it dilute in your bladder so as not to harm it. You are going to do just fine!
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Also did all chemos without a port .... I found days 3-6 after treatment day to be the hard part (the black hole we called it at my house), then you slowly climb back out and right when you're feeling kinda good.. it's time for the next treatment! lol. I think the best thing I did was jump in on a chemo thread in here with a group of ladies who were having chemo at the same exact time... find your group.. I'm sure one has been started ... it was a huge help to me!
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Cider, I did think about two things that may or may not have been mentioned in your chemo thread. First, if you are prone to nausea, make sure you have a prescription for Emend. The Zofran, Compazine and Ativan didn't do it for me but the Emend knocked the nausea right out. My MO said there is a correlation between pregnancy nausea and chemo nausea so if you were sick when you were pregnant you have a good chance of being sick with chemo. Emend absolutley stopped that though. The second thing is to have ice chips that you suck on during chemo. A/C will give you mouth sores and the ice chips reduce that. I love Sonic's ice so every morning before chemo I would run through the drive thru and get a cherry slush and I would suck on the ice chips during treatment. That actually kept me from getting any mouth sores until the very last treatment. My last tip is to keep you fingernails painted with Sally Hard as Nails. It does something to help seal your nails and keep them from hurting so bad with chemo. As holtbolt said above, a few days after chemo is pretty bad. But then for me pretty bad just meant that I had zero energy. I got chemo on Wednesdays and Friday, Saturday and Sunday I slept far more than I was awake. I felt kind of like I had a light flu and was just really tired. On the port issue, everyone told me it didn't hurt at all so I went in there thinking it was nothing at all. The port placement was really sore for several days. It will be one more area that you have to avoid sleeping on for a while. The soreness passes in 3 - 4 days though.
You have been such an inspiration for me and I hope I can help you in some small way too! Plase keep us posted!
Susan
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Thank you everyone! I don't know what I'd do without you. I'm on the June chemo thread, but I've bonded more here. Susan, I know about the ice but not about the fingernail polish. I already keep a sheer polish on all the time (Barielle Natural Nail camouflage---love this stuff), so I need to look into this more. I don't think I'm prone to nausea. I guess I'd know if I am! I asked to be 'down' more on the weekends, so that's why I'm getting Wed infusions.
Oh, I'm 4 weeks out from my DIEP! I can't believe a month has gone by. I still have breast pain and I need to get started on PT for my right (cancer) side. My range of motion is limited and I feel it all the way to my wrists. My arms are normally very flexible so I feel very aware of the limitation. I've got some exercises from my LE therapist, but I don't think it's enough. It feels like there's some cording going on in there. Glue has been off my abdominal incision for a good week but still plenty on my breasts. I did some picking at the glue a few days ago; not recommended! I tried shifting to my left side to sleep last night but it hurts and every time I woke up I was on my back. It was nice to lay down for a bit on my side though. I miss being able to curl up on my side and stretch out on my belly. I've got one more day in my binder. I feel like Jessica Rabbit in it! I've been wearing my surgical bra all this time. I can't ever remember going braless (except to sleep), and I'm still very ....voluptuous. I tried going without around the house and it feels like I'm wearing a life vest. I feel more secure in the bra. I'll probably wait to go bra shopping until after I get my port. I have to catch myself from doing a full on wake up stretch because my belly is still so tight and then the insides feel weird, too.
We had an earthquake last night. I did not feel it. Soooo...in my area we have record heat (98), cicada invasion, devastating tornados, flooding, and now earthquake. So apropos, to go along with my own diagnosis!
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