TE TROUBLE
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Re pink October - my mother was a breast cancer survivor and I bought all the pink ribbon stuff and wore it in her honor. This year I feel really weird about it too. I feel like I shouldn't be wearing it now that I am going through it. My husband, on the other hand, wants everything he can get to wear. I am okay with him wearing it though.
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Been off the boards all weekend, have lots to catch up on! Survivor, good luck tomorrow! Bevdurrant...let us know what your surgeon says. Is the "hole" yellowish-green? That is what I had but when it reached the size of a quarter, my PS put me under to re-close the wound. Though nothing ended up helping close it until I had the TE taken out.
RE: The Pinkification of October...oh my, I can relate. This morning at the supermarket the cashier asked if I wanted to donate a dollar for breast cancer research. I said no, but was thinking "I already gave to BC research. I gave both my breasts." Of course I didn't actually say that. But one day this month I might. This is my first October having BC and WOW is it weird. So different than pre-BC. I just blogged about "The Hunt for Pink October" over the weekend. I've come to the conclusion that pink is for the people our BC affects. So JBennett, I get why your hubby wants to wear it! And I get why it makes you uncomfortable.
I also completely totally relate to people not knowing what to say to us once we have cancer; I call them "checkouts." Just blogged about them too.
We are handling a lot here, ladies. Cancer / people not knowing how to deal with us / being reminded that we have BC every day for a month every October (Oh, joy!) / reconstruction / and TE Trouble on top of it all. Yowza!
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I love pink, and I absoloutely HATE that it is the breast cancer color, because everytime I put it on, I wonder if people are looking at me and wondering if I have BC. One person noted that she encourages her friends to contribute to bc research and not to bc awareness. Good plan, however, as a marketing professional, those two unfortunately go hand-in-hand. One of the best things about having this cancer (not that any of it is), is that it is the "cancer of the day." So consequently, while there may not be enough money going to research, there is more than for other cancers.
SpecialK-shame on you guys for beating up on our Colts. They needed a break!
Busy packing and getting ready to head to Ashevill NC for a couple days and then to HIlton Head. Can't wait.
On a whim, I signed up for a Making Strides walk the Saturday after we get back. Then someone said something about how they hand out nice sashes that say survivor on them . I AM NOT WEARING SOME KIND OF BEAUTY PAGEANT SASH TO ADVERTISE MYSELF AS A BREAST CANCER PERSON.
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Ok ladies I am back from the Bucs game (sorry fluff about your Colts). Weird experience as I had a pink shirt on with a giant pink ribbon on it with a pirate flag in the middle of it. There was NO question I am a BC person - walking around the stadium with a lot of drunk people here and there - I got the oh you poor thing look, the you keep fighting sister look, the oh look a breast cancer person look, and the oh that lesbian 9(because my hair is 1/2 inch long) has a pink shirt on look. Interesting..... The tailgate put on by Moffitt was beautiful though - tablecloths and flower arrangements and lots of pink balloons. It was very nice.
bev - get that situation checked out ASAP - I am concerned about you!
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Bev let me know what your PS says about your wound hole. Mine is smaller than yours about 2cms across dont want to talk coin size as most of you wont know the size of my coins. I am going every other day to get it packed and cleaned to ensure it doesn't get infected again. I had an infection that is why they removed my TE. I dont look when she is dressing it but the nurse does say it is healing from the inside out. I asked about getting restiched and they claim it is not possible after the infection. It is so irritating that some people will do these things and others wont. They always have a credible sounding excuse so if you are a non medic you have to place your trust in them. I hope things are starting to improve Bev I think it will be a while bfore your skin will be up to radiotherapy. People keep saying to me enjoy the break, or enjoy your time off the cancer treadmill but firstly I am still on the treadmill going to the hospital every other day and secondly I want to get to the end and get off for good. I hope you get a speedy recovery.
Debbie
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So I really need to ladies now. Ovaries and portacath came out great, but when PS took Lt TE out he said it looked like the inside of a boil. He has no idea what happened but now I'm without anything on left side. I haven't stopped crying since I woke up yesterday. My family and BF and PS are so upset and now I look completely mutilated. I don't know how much more I can take. Thinking I'm going to wake up with two new squishy boobs and that I'm finally done and I wake up with the rock hard Rt TE and a concave left side. Got home just an hour ago and BF helped me take off dressings to empty drain and I had to look away from the mirror. Worse than when I had BMX, bruised bloody and concave. Stomach pretty sore, go back to PS tom and he said today that I'll be having surgery again Thur or Fri to have another washout done. No one knows what's wrong, don't know if he will have to cute more skin off of my left side and don't know if I'll wake up without a Rt TE. I'm really losing it and I can't stop crying. Family and Bf have been so supportive, but don't know how BF will ever see me as anything other than a mutilated freak. I thought I was done, I thought this was all over. Help me.
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Dawn - I fully understand... the oddest thing is that I swear I did not understand going into this that (1) the TE might need to be removed, and (2) after it was removed that it would be months before re-insertion, and (3) that (in my case) I am unable to have the reinsertion and need a complelely different type of reconstruction.
You will, as the breast without the TE heals, become more comfortable with it... my TE has been out since 7/12, and I refer to that side as my boobette.... it is misshapen but no longer has any oozing or redness or open areas.... and I am now emotionally ready for the next operation which for me is a DIEP (and I elected to do a prophylactic UMX and double DIEP).
I still do hate the lop-sidedness, and the inability to wear certain tops that show I have zero cleavage, but it is what it is.
So cry and mourn, then figure out the next steps... one of my next steps was switching to a new plastic surgeon that explains EVERYTHING... I am not big on surprises.....
and finally, {{{hugs}}}}
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Just_V-I always knew there could be complications, I just didn't know that it could be at the very end. I would have been alright if it had happened at the beginning and I didn't have any symptoms to speak of, some redness but always had that. Other problem is that I'm naturally very thin, I have no other options. Mentally I just don't know if I can handle this. I haven't slept since I woke up from surgery cause I can't stop crying. I know all you guys have been through this but I just feel so alone right now.
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Hi friends, i went back to see the sugeon that did the BMX i have every faith in him, he said it actually looked worse to me than it was, the tissue looked healthy, he is going to put a vac on it tomorrow, he says these are amazing and i should heal in time to be on track for radiotherapy at the end of October, does anyone have any info on this?, apparently they heal 75% faster than packing, he gave me a full explanation for everything, made me feel much better.................i pray this works!!, thank sooooooooooo much for all your advice, i will keep you up to date. Have a wonderful day
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Good news, bev! Hope that works.
LOL SpecialK. Sounds like you had fun.
Dawn, I am so sorry!! I hope your PS can figure out thwat went wrong & what the next step will be. (((Hugs)))
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Survivor Dawn: I am SO sorry you are dealing with this detour in the Recon road. It sucks. Your tears are likely several things hitting you at once: You are seeing yourself flat on one side and that brings up the fact that you have had your boobs removed. That is a harsh reality to deal with. And you don't have to look if you don't want to!! (When TEs are inserted during BMX, we wake up and still have something on our chests, so I don't ever *really* see an image reflected back to us in the mirror that reminds us of when we were pre-teens.)
Second, you are feeling mutilated, and rightly so...you had a major complication and your tissue didn't heal and the body can look pretty angry until it heals itself. But you will be surprised how quickly your tissue and skin will heal now that that TE is out. There is a lot of energy that the body expends on trying to heal a wayward TE. You will feel physically better once you get past this post-surgical phase.
Lastly, you are dealing with a lot of mental anquish right now. There is the fear that the way your chest looks right now is as good as it's gonna get, that you'll never have boobs again, that you have to deal with being lopsided and having to hide on top of everything else. It's too much! You are dealing with a LOT. Of course you want to cry!
I get all of it, all of what you are feeling is valid. Allow yourself the time and space to let those tears out! I'm glad your family and friends are being supportive.
I also want to comfort you by saying that the way you look today is NOT how you will look forever. Know that there ARE many ways to make your chest look "normal" again, that the world of plastic surgery is rather magical in all that it can accomplish.
That being said, we have to trust our PS's. And that can be hard to do when complications arise. For your peace of mind, you might consider getting a second opinion from a new PS in the next couple of weeks. Set up the appointment now, as it can take time to get in there. (If you need help finding someone in your area, there are ladies on BCO who can direct you to a PS in your area.)
When you see your PS later this week, have him tell you what HE thinks your options are from this point out. If he doesn't seem confidant that he can get you where you want to be, then most definitely get a 2nd opinion!
OK, your job now is to breath deep, relax your muscles, and rest. Write out your fears if you need to. Putting it on paper can bring a lot of clarity. The main thing is to stop the mental spinning. Once you can pinpoint your main fear, you can address it.
Sending you soothing cyber hugs! We are here for you!! ;-)
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Thanks ladies, your words of wisdom and love really have given me alot of comfort. I know I just have to take that deep breath again and start over, I know I'll get through it, guess I'm still in a state of shock and in a bit of pain from the ooph. Hoping things get clearer as I get some rest. Love to all, thanks again.
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Survivor my heart goes out to you! I'm so so sorry you had to go through all of that. You will be strong though, and heal. Count all the blessings in your life, and surround yourself with the positive. One day at a time, sister! You WILL prevail. Thinking of and praying for you. Stay tough, chin up.
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Oh Dawn. You cry all you want and come here and bitch all you want. Take care of yourself too though! I agree with all the advice you have been getting. You go into your next PS appointment armed with tons of questions! You are in my prayers.
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Oh Dawn….what a shock you've had, thinking you'd come out of surgery with implants and be at the end of this journey, only to find out you've hit yet another snag in the plan. My heart goes out to you. I'm sure you're very disappointed, and crying is to be expected…I"m sure we'd all feel the same. Allow yourself to be pissed and upset, then resolve to get back in the saddle and deal with the next steps to get you to the finish line.
Mich
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survivor11: Soo sorry!! That really sucks! No wonder you're crying....Just know we are here to support you. And I don't know how you feel about it, but when I finally gave up fretting and worrying so much and decided to leave it in Gods hands, I felt free and at peace. You know you will be fine, don't you?
One day at a time... 0 -
I'm crying again, but this time from the love and support you awesome ladies have given me. I do feel better tonight, friend, family and BF have been a blessing and I agree miasanta200-I've left it in Gods hands. Will trust him to give me no more than I can handle. I know that many of you ladies have been where I now sit and you've gotten through it so onward I'll march. The end has to be there somewhere right?
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Oh Dawn you know honey these things are bumps in the road, i know your pain, but you know what its okay to be sad, but dont let the dam thing get the better of you, 6 months from here you will be in a better place, I have a wound vac fitted tomorrow.............am very nervous but am positive now that i have answers and see a proactive approach from my surgeon (he is truely wonderful), i was down like you, felt like nothing ever goes right..................but it will and with the support from our sisters, family and friends you can do it girl!!!, hugs to u B:)
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Hi Debbie, I know what you mean, its hard to treat life like a holiday!!!, im hoping the wound vac will be my prayer that is answered, man i need a break....................but ya know what i am gonna stay positive, as hard as it is, just crapping myself about tomorrow!!, will let you know, have a wonderful evening, Debbie and everyone loves and hugs B:)
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Survivor, I have been away from the computer a lot the last couple of days getting ready to leave. I am so sorry about your surgery. The shock of waking up with something complete the opposite of what you thought is awful. At least with mine, I knew I only had a 50/50 chance of getting the implants and that was optomistic.
I agree it was also gross to look at for a while. For me, it wasn't so much the missing breast part, but that I am squeamish and it was yucky.
We went to see the movie Dolphin Tale last night with some friends. Cute movie, but there are a couple of parts where they show veterans missing legs and arms. I thank God every day it is only my breasts that no one really sees that had to go. I can fake my way through appearances on that. The other parts, not so much.
I agree with the others that you will get through it. My exchange date was set today for November 4th. Now, after your reading your story, I have something new to be paranoid about. He did tell me today that when he goes in to place the implant, he will culture the tissue. Didn't occur to me that it could be a problem. I am in the same boat as you...enough fat to do some fat grafting, but not enough to do Diep.
Here's a thought for you.
"Courage doesn't always roar. Sometimes courage is that quiet voice at the end of the day saying, I will try again tomorrow."
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Survivor, I am so sorry this has happened to you but glad you are feeling a little better. I'm not trying to be trite, but my grandmother used to say, "This too shall pass." And it will. Putting it in God's hands is all you can to and He will provide the answer. Know that you will be in my prayers.
Bevdurrant - I work in a NICU which is mostly a surgical unit. We use wound vacs on the babies when we can't get their incisions to heal. I have seen some pretty nasty wounds turn out just fine using the wound vac!
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Suvivor, Dont know what to say! Sometimes life sucks. I felt exactly the same mutilated. The shock and disappointment is massive and you feel so alone. Good luck in coming to terms with things and speedy recovery for next stage.
Bev, the wound vac sounds great. I have heard the results are good and much quicker. I dont know if the wound needs to be a certain size. They mentioned it to me but it was dismissed and they continue with the packing. Did you say you expect your wound to be healed by end of October? They dont expect mine to be healed by then and it is a lot smaller than yours. So Let me know how things go and I might bring it up again.
Hope all goes well. Good luck.
Debbie
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Here's to a new day! Dawn I hope you are doing better today. Let's hope we all have a great day!
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Survivor - Just catching up and so disappointed to hear what has happened. I can't imagine how awful to expect those nice squishy boobs and instead wake up to this. You have been through enough already. The crying and sadness is OKAY. It is part of grieving what was supposed to be but is not. For me when the TE came out it was like grieving the loss of my breasts all over again - but like someone here said earlier, it was so much more obvious than post MX when there was at least a partly inflated TE to give the semblance of a breast. Kick, scream, cry and then allow yourself lots of rest and healing. Sending lots of healing energy your way.
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Thanks guys. Just got back from PS. Cultures from surgery again showed nouthing. He said the skin was just so inflammed and thin in that one spot. He wants to wait 3 months before putting in a new one then another 4 months of fills. I think I'm getting a second oppinion cause other than the tissue looking bad on the inside and the red spot on the outside of the tissue, I still have no clinical signs of infection and don't see why I'd have to live like this for 3 months before a new TE is put in. I'm already stretched out, why do I have to start all over?
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I would definetely go get a second opinion. How far are you from the University of Kentucky? I have heard real good things about the hospitals over there. We were actually faced with the opportunity to move there right after my diagnosis but decided to stay put.
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survivor - sorry - I have been off the computer, yesterday actually felt so sick I didn't get out of bed. Haven't had anything to eat since Monday, VERY upset tummy. To come back on today and see your news, I am so sad for you. Going in with one expectation and coming out with another - all of us TE challenged ladies know that fear. I am so sorry that you have had this set back. Please know that we all feel your pain - the reason we are on this thread is that we need each other because we are all in this particular boat together! Even though other BC people understand the BC piece - we understand the TE problem part! The one thing I can echo from what the other ladies said - it will get better with time. Once you are over the shock and a little healing takes place, you will come to terms with this loss and then figure out the next steps forward. Sending you strength and hugs.
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Dawn, I agree that a second opinion sounds warranted. Great news that there is no sign of infection, however! When my skin thinned, my PS gave me the option of reinserting the TE or doing a lat flap w/permanant implants because I was almost stretched enough on both sides when my skin gave out (no infection).
Sorry you aren't feeling well, SpecialK.
I am now drain-free!! Had the back drain pulled today.
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dll66 - Thanks, doing better today, I think it was some kind of 24 hour bug. Yay about the drain - it is always such a relief when those are out. It is so hard to get comfortable when you have them.
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Still red underneath the left TE on my torso. Not rashy, just red. No pain, no itching just red. Most likely from using the stupid steroid cream for too long. I'm just reading up on it, and it causes thinning of the skin and broken blood vessels! Why in the heck would the dermatologist put me on that, knowing my TE situation?? I guess it takes a couple of weeks for the skin to wean off of the steroid cream so I have to wait and see....again. They put me on a non-steroid cream as well as an anti-viral cream (just in case it has anything to do with the shingles they "say" I had). I don't know who to trust anymore. The good news on this is that I have a few months to figure out exactly what it is and hopefully fix it. My surgery on Nov 30th is on the other (right) side to get that TE back in. Can we please stop with the drama? lol
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