October 2014 Surgery Sisters
Comments
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SCMOM, YES! I get that creepy cold feeling when I swallow something cold! Is it because we have lost our "padding" over our chest?
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Thanks Akitagirl! Congrats to your daughter!!
Echo seemed to go fine but will find out in morning I guess if anything is amiss that would make me not a candidate for a port. Port surgery is at 9:15 in the morning.
On another note, I got to see the PS' nurse today and the last drain got removed! WOOHOO! Missed seeing the PT in his office though so I have to call her tomorrow after surgery to see if I can come in to see her.
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mefromcc - isn't it the weirdest feeling?! Some ladies were guessing it was from losing padding, others were thinking it was stimulating the nerves and others thought nerve damage. Isn't it nice to know you're not alone?!!!l
Laura, good luck with your port surgery...mine was a piece of cake, I woke up so happy! Never filled my rx, just took Tylenol for a couple days, was driving the day after the surgery!
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SCmom
Yeah the cold drink thing is freaky. I don't drink anything with ice anymore.
As far as thanksgiving...I'm hosting for 13 of us. I'll be 4 wks out and 2 days from my last 100cc each fill. I may order as much as possible from one of the local grocery stores. I think all I'd have to do is reheat? I will supply the food but I made it clear I won't be setting/clearing/cleaning.
I attempted to drive first time today (day 25). Epic fail. I ran into friends and they insisted on driving me home. I was fine with that. I spent too much time shopping and was exhausted by the time I realized I had to back the car out of its space.
I asked doc at last appt when I'll stop sleeping so much...he said I should be back to a normal 8 hr night by week 6-8! OMG. So glad I don't have to go to work. I slept 15 hrs yesterday(although I did have two DR appts and a big fill and went out to lunch w DH).
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horsemom, it's funny that none of us brought this up before, I just thought it was another of my weirdness until I saw the whole discussion about it!
Good luck with your Thanksgiving, that's a big gathering. Check with your stores before you order, some of the dinners you do have to cook the turkey for a couple hours. If you have a Cracker Barrel near you they have GREAT turkey dinners to go!
When you're ready to give driving a try again ask your husband to put some extra air in your tires...that makes it much easier to turn the steering wheel.
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Metfromcc, did you say he is removing blood, not fluid that looks clear/yellow? If so, that's a different story.
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Horsemom - I can't imagine hosting that many when you're still recovering. Good luck. Please get LOTS of rest between now and then. Accept any and all offers of help and food and if the offers don't come rolling in, ASK! Honestly, what's the point of having cancer if you don't even get a pass on at least one of the holiday events???
My dad is hosting our family, with a fair number of contributions from everyone attending. Of course, he has a housekeeper, too, so it's not too big a project for him and he says he likes doing it. O.K. - I'll take that without anymore argument and a lot of gratitude, too. I'm happy to help clean up the kitchen and package leftovers.
I hope everyone else is looking forward to an easier week next week. Horsemom, stay off the roads and take it as easy as possible.
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SCMOm, yes! When I take a cold drink, it is as if I have a wandering esophagus! The cold water seems to flow down under my missing breast. My PS says she has heard of this phenomenon from others.
Since I am pretty numb from my spine in the back going all around to my sternum, with the whole TE area pure alien, no feeling whatsoever, it is so odd to have that cold sensation from somewhere in my interior.
Who knew? This is our secret, our uniqueness, our shared experience. Hah! Thanks for pointing it out. Once again I am not alone here.
Sharpei
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I've been trying to convince myself that that couldn't be happening.
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YES, cold is weird. And shower temps matter. AND if it is cold outside, that feels super weird also. I can't wait to get these TEs out!
Driving was hard for me to turn, I had to use only the bottom of the steering wheel. 7 weeks out I was able to drive like normal, no super odd twinges or anything.
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Mefromcc; you must be part of my minority that hasn't had any reconstruction yet? Are you delaying or not doing it at all? I can't help but help but feel a little upset that I'm not further down that road. My BS said no he just doesn't do that anymore but it seems like everyone else has TEs and that's one more surgery for me. I'm happy to have the healing time, I guess. Try not to get discouraged about how you look today. Scars heal and you can fix and/or change what you see today.
Scmom; sorry you had a down week, you've been through a lot. I had to laugh at your cold comment, I thought that was just me!! The cold temps really seem to get to me more too, I lost my boob insulation.
Sandra; It totally makes me sad that you're hurting, I'm sorry! You've been so strong and supportive. I hope things get better for you as time passes.
Rev and Hopeful; you're in my thoughts always!
Akita; I hope your port placement went well and that you were able to make it to practice last night. You seem so much more mobile than I am!
I know I missed some names, it's so hard to write on this tiny cell phone but I'm too lazy to get the tablet and I don't have the luxury of being able to look up and review when I'm typing.
I hope you're all doing well. Maybe one day in the not too distant future we will all feel "normal" again. I sure hope so. That's my prayer for each of us.
Have a beautiful day!!
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i am so glad to hear that others are having the same experience when drinking something cold. I was beginning to think I was nuts! Are any of you experiencing pain from the left underarm down across to the shoulder blade? I'm having some pain that radiates to the back? The drinking thing is freaky though. Waiting on my score from the oncotype dx test to see if I do chemo.
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i am so glad to hear that others are having the same experience when drinking something cold. I was beginning to think I was nuts! Are any of you experiencing pain from the left underarm down across to the shoulder blade? I'm having some pain that radiates to the back? The drinking thing is freaky though. Waiting on my score from the oncotype dx test to see if I do chemo.
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Funthesun; my entire rib cage, front and back is tender. I don't know what happens in surgery but I was black and blue after. I think we also may create sore spots because of the different way we carry ourselves now. It will be so nice when I can not feel this soreness. Good luck with your oncotype score. When should you have the results back? Thank goodness for recent funding and research so we have tools like that to help us with this journey. I hope your score is low. It's stressful waiting for yet more test results!!
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Oh my gosh---I came on here to do a bit of venting and catching up...SCMom--I just read your comment about the cold feeling in your chest when you have a cold drink and YES I totally feel that, it is so weird!! I was going to ask the dr about it but thought maybe it was my imagination!! Wow!!
So I've been handling things pretty well, and was looking forward to my follow-up with the plastic surgeon yesterday to see where we were. (had BMX/sentinel node biopsy 10/24, 7 removed, all clear). Recovery has been moving along, blah blah. They were unable to put in tissue expanders at the time of surgery due to "blood flow issues" which I accepted (not as if I had a choice, right?!) but was looking forward to perhaps getting that process started within the next 3-6 months. Previously I had been told that expander/implants were my only option--no fat transfers as I really have no sources. Yesterday he told me that due to how terribly thin my skin is (and there are currently a couple of "wounds" as I call them along the incision line and above on one side--the tumors were very, very close to the skin...that he's concerned about me even being able to support expanders. He brought up the fat transfer situation again then laid out a scenario that involved possibly 9 months and 3 separate surgeries to transfer fat, and then TE's for a period of time, and then implants. I could barely wrap my brain around all of this. I just kept writing down the months and surgeries, and basically left in a confused and saddened fog. I had a plan and now feel derailed and need to get my good attitude back. I don't go back to see him until 1/20 and now just feel in a holding pattern that I can't control or predict the outcome of. Thanks for listening ladies, I really don't think anyone can understand other than my fellow warriors.
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Oh LeeLee, sorry to hear the news. I know what you mean, all these decisions are just so hard to make - and, the waiting is awful. At least the 2 months until you see your PS will give you the time to sift through your options.
On another note, I don't have the cold sensation (maybe because I don't have tissue expanders?), but I did notice this morning when I was doing my implant massage that my implants were squeaking! It was quite disconcerting, but all you can do is laugh. Yet another reminder that these are essentially foreign objects in my body.
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Hi Trails, thanks so much! The funny thing is I really don't know that I understand what my options even are at this point, ugh. I did google "fat transfers in skinny women" and found a site that shows it can be done, lol! I didn't pay any attention to any of the different ways of doing it before as it hadn't been an option. Now I wish I would have asked more questions yesterday. Oh well. I don't have TE's or anything--yet that cold sensation is freaky!!
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I have that sensation when I drink something cold too. It's odd.
Well port surgery went great. I had happy juice. Lol.
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LauraW68--so glad your port surgery went well! "Happy juice"---that's hilarious!
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LeeLee, I understand completely. Thin skin flaps is an issue I never learned about before surgery. It's probably just as well since you can't really tell your breast surgeon exactly how thick the skin flaps should be. My breast surgeon was, shall we say, very thorough on my left side because it was quite thin after the BMX. The other side is fine. It's almost like two different surgeons did the operation. I actually talked to him about this and he said no, he was the only one but it's common for one side of our body to not match the other. I know that's true because one breast is always bigger than the other, one hand, one foot, etc. I just had more fat on my left side. The pathology report showed the breast tissue was much more dense on the right (40% vs. 25%) but it weighed much less, which doesn't make sense. My plastic surgeon said this is why they can never promise you that they will be able to put in TE's or implants. They just don't know what they will have to work with after the breast surgeon does his part. The skin flap has to have enough fat attached to it and an adequate blood supply to keep the tissue alive. (That's what you had...blood flow issues.) If it's thin, the flap can't be manipulated much without compromising the whole thing and causing healing issues or tissue death (necrosis.)
Although I didn't have radiation, the PS said that his radiated patients have a tough time with reconstruction because the fat pad underneath the skin is thin and the skin itself is fragile and not supple. The rate of success is about 50% so he usually advises a Lat Flap where a section of fat and muscle from below your shoulder blade is tunneled under the skin on your side and brought around to make a breast. The blood supply remains intact and the rate of success is quite high. This may be something you could consider. There are women in our October group who've had this particular surgery and a very active thread on the "active topics" list.
So while I know you are disappointed that things didn't go as planned, be glad your doctor recognized the situation was not good enough to take a chance. Be glad you aren't facing a huge wound healing issue, infection, tissue death, and months more of treatment. Now you have time to perhaps get fat grafting to thicken the skin flaps or...just eat like crazy and put on some fat yourself so they can do a Lat Flap procedure.
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The other thing I find weird is the different temperature of the foobs. My thin-skin side is cooler than the other side.
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I had the cold-drink feeling too when I had my lumpectomy (I guess based on location and amount of tissue they took) -- it eventually disappeared.
For those of you that are feeling tired and sleeping a lot, I think that's pretty normal after surgery, but I would also encourage you to get your iron levels checked if the fatigue doesn't lift. My ferritin dropped to half of what it was, and I think that's probably why I've continued to be tired, etc. I'm now on iron supplements and hoping to see an improvement. My level is 10 and my doc says there is research that most women feel their best at 50, so I have some work to do.
LeeLee -- sorry you had a rough appointment with your PS. I've read about some good results from women who have done fat transfers before TEs/implants, but I know its daunting to think about months of surgeries. Luckily
, I had enough tissue to donate for flap recon surgery, but I'm still doing a couple of fat transfers to try and even things up. -
sandra4611--thank you so much for your thoughtful reply! You described exactly what is happening, and it is actually thin on both sides, just worse on the right where it looks like they "dug in" in a couple of places. Fortunately my PS explained all of this very clearly to me prior to surgery and I knew going in (under?) lol that I'd either way up with or without the TE's..I believe he used a technique he keeps referring to as a "spy" to determine if it was too risky, which it indeed was. I agree 100% that I'm glad he waited, especially after reading about some of the stories here. I was fine without the TE's for now, looked at myself right away in the hospital so as not to freak out, and haven't freaked out since. Even when I thought the purple dermabond was ME! Anyhoo---my disappointment now is that I thought from this point I'd be waiting 3-6 months then going straight to TE's. This new discussion on fat grafting has me all befuddled. I did actually joke with the PS that maybe I should eat more/gain some weight.....Oh brother!! I have no right to complain as overall I feel fortunate with alot of this but geez....just feeling CRANKY!!!
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Ridley--thanks for the encouraging words about the fat transfers before TE's. By reading this board I will turn this crankiness around for sure. "Just keep swimming" as Dory would say. So--here's my dumb question for the day- when it comes to these fat grafts--is it normal/common that they do it over 3 sessions? Is there suddenly some type of "fat lumps" just sitting in there? Do they keep opening up the same incision or is it just injected somehow? sandra, you had mentioned below the shoulder--I know there's some puffiness kind of below and towards the back of my armpits...wish they could use that! I really did not realize how many questions I had...ok, time to hit search on the menu here!
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LeeLee -- I've only had one fat transfer done, but here's my experience. They took the fat from two areas (both in my abdomen) -- I had teeny incisions in my belly button and my abdominal incision (from flap transfer) -- one incision had a stitch and the other had just a steri strip. As I understand it, they take the fat out, spin it, and then re-inject it (I think its almost liquid like at the time of reinjection) No incision in my breast -- just the mark of a needle.
I think the reason that they do it multiple times is that fat has a habit of reabsorbing. I read a posting that mentioned it is better to do a little the first time and them more the second/third time. Some of mine did absorb -- I'm not sure how much. Some certainly did stay. It doesn't feel like a lump. I had a spot on the top of my left side where there was almost no fat/tissue -- now it feels like there is a layer of tissue there -- pretty cool actually.
We're going to do one more transfer in a few months.
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Just got back from my VA group for a service - connected problem. I will answer the questions posed to me earlier.
Sandra, my one spot is bloody, not blood. It is the same color as two days after surgery. Yet the second spot he sticks is urine colored. The other breast is all urine colored fluid. He said the bloody area is still irritated.
I think it is funny how many of you are talking about fills, when I am having unfills.
Hummingbird, I just had the skin-sparing BMX. My PS would not do any reconstruction until I healed from the first surgery because of my diabetes. I have an appointment with him December 2. I hope to be able to have a DIEP in February 2015.
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LeeLee, I'm gathering all the info I can on fat grafting so I have no personal experience to share. Glad there are others here who can help. One of the questions I have is how can they inject fat if you already have an implant and just need some padding over it? Wouldn't they puncture the implant especially on those of us with very thin skin and a little bit of muscle covering it? I can understand injecting fat if you don't have a TE or implant but am stumped as to how it's done with one. I've seen videos on YouTube about fat grafting that shows the PS doing liposuction to take out fat, processing it, and then the nurse filling about 100 tiny syringes with it. I've read that as much as 40% can reabsorb if it's not "planted" correctly...just don't know what "correctly" means. Also need to learn more about fat necrosis which is where bits of fat dies. Is it because too much was put in one place? Too far away from a blood supply?
The fat grafting I'm going to have after Christmas will be on my chest where I have some dents and hollows. Here's a photo I took just now that shows the dents on my upper chest.
Some of the "valleys" are covered up by my tall gummy bear implants (Allergan 410 Style FF 740 cc.) When I started out, I had Allergan Style 20 800cc rounds, but they didn't come up high enough to cover the lower hollow areas. You can see in the photo where the gummy bears stop and the hollow parts show. I'm wearing one of my new Genie Cami Shapers. Love them! Go to Genie online and they have a sale going on...6 for $60. It even includes shipping. I got some nice colors as well as basic colors too.
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Sandra,
I was just talking to my PS about how thin the tissue is on my upper chest and how when i put my arms up the top of the TE looks like a shelf--horrible. He said we can use anatomic taller implant to help with that unnatural shelf look and maybe help out with some of the flatness above. But it will only come up so far. Then after a few months see if we need to consider a little fat grafting to smooth it out.
Bra is cute!
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Doc gave me a scrip for Percocet today when being discharged after the port surgery.
It's been a long time since I have took percocet (or the generic oxycodone-acetaminophen) before this scrip. I'm have a few of the side effects: itching (can deal with), sleepiness (works for me as I haven't been sleeping good), and nausea. I almost threw up earlier - which vomiting is a side effect too.
Any suggestions on how to curb that nausea?
Second question...
After my bilateral mastectomy surgery, it seems my whole body has dried out so to speak. I have so much dry skin whereas I rarely had that before. My legs, arms, chest, stomach, face, etc. are so dry it looks scaly at times. I have to wonder if that Dyna-Hex wash I had to use before surgery did it to me.
What lotion do y'all use or suggest?
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LauraW68, yeah I was up two nights ago (and most of the day) being VERY ill after taking one in the middle of the night. Usually no problem because I take it before bed (after a snack). So now I have a couple pretzels first. No probs since.
Good luck.
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