TE TROUBLE
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Togetherness, hugs. It's hard I know. I did buy prosthetics after first year but mostly I wore my Amoena cami. Those have served me so well. Fluff in the form when I had no TE. Less fluff when the TE wasn't filled. Repeat. Repeat. LOL I have 2 white ones and a tan and a black. The white ones turned gray pretty fast. But even after my exchange I use the black one for the gym and the nude color under things like a regular cami. They are very comfy. Because of the fluff forms they are very light. And even at first when i had drains they come with the drain pockets. They really worked for me. Much love.
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So sorry Togetherness. Not fair, that's for sure. You are a brave lady.
I just found out today at my 6 wk post exchange check with the PS that I'm going to need a latisamus flap procedure to "harvest" muscle and tissue from my back to repair my underarm and side of the left foob that was trashed by infection. The PS had to remove most of the tissue and parts of 3 muscles and sew the rest back together in the second surgery. Those shortened muscles are causing problems now in my shoulder and chest as I heal from the third surgery and move around more. The front of my shoulder where one muscle attaches is painful all the time. On the left foob, you can see this bizarre rippling of muscle - more like waves with dips in between - because the shortened muscles are pulling so hard.
Damn infection. Damn cancer.
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Sandra. Damn is right! Crap. Hugs to you too.
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Thanks Moonflower for the info. Did you order the cami online or get it at a store. I will definitely research it. So it looks like the third time is a charm for you. So happy for you!!
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Oh Sandra so sorry to hear that. When will this madness end!! It just sucks!! I just want my life back pain and infection free!!
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Thanks! Fingers crossed! LOL. I ordered it online. They come with the fluff forms so you don't have to order extra. Wash the cami's but not the fluffs. There is a pocket so unless it gets really hot they don't get sweaty or dirty so you rarely have to wash the puffs. If you do do by hand to help hold shape. I think the number is 1401? Or 1402. But they are step in for right after sx so no overhead if you don't want. About 50 bucks apiece. Get the black or tan. I used the white the first year but it picks up colors in the wash and never looks white! Lol. Good luck.
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Hugs to Sandra and Togetherness!!! Will keep you in my thoughts.
Moonflower keep up the positive thoughts!!
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Thanks everybody for your empathy and info. I will let you know what happens re: my wound vac. The medical supply company already told me it was on its way and my co-pay is $25 per day for the machine. Didn't like that idea.
TangandChris - My MO would not give me any treatments until drains were gone. That's why I pushed the PS to pull them after 13 weeks and eventually lost my TEs. The open wounds are a different story. MO says they do not usually get infected because they are open and cleaned daily. So chemo began right away and no infection in wounds after 6 treatments.
Togetherness, I understand your disappointment. What it looks like today is not how it will look in a month or two. Don't forget reconstruction can take place down the road. I never really considered that until recently. Immediate reconstruction was all I was offered and agreed to it. But other options exist for us. Think positive.
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Oh Sandra,
The last thing any of us wants to hear is MORE surgery. Take one day at a time and know we are here for you!
Denise4603
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sandra - so sorry to hear about another surgery in the offing. Hope it's not urgent and you can take your cruise first.
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So sorry for those who are struggling and need more surgery - been there, not fun.
tanga - I was delayed 14 weeks from BMX to first chemo by five surgeries. They would not start me until I was healed. I did not have any infections, but rather skin that kept tearing and a bunch of necrosis. From the last surgery I waited just over a month to begin.
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SpecialK-Wow, that just seems like a total ordeal. Were the doctor's concerned at all about the delay?
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The next surgery won't be scheduled until I see the PS Feb. 6th. I would imagine it will be in late Feb or early March. Last night I was looking in the mirror trying to convince myself I could live just fine the way I am and don't need another surgery. Then I woke myself and my husband up in the night, moaning over my aching shoulder. The muscles are just too short and the shoulder and upper arm go into spasms when I sleep. (In the day I notice the ache and move a different way before it gets worse.) But to fix it they have to take a muscle from my back?
Crap, crap, crap. It's like Sophie's Choice.
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tanga - yes they were concerned because I was node positive and Her2+, but there was nothing anyone could do. Four of the five surgeries were within a five week period. We did the best we could, and I'm still kickin', right?
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Sheesh, I can even imagine all of that. I'll quit my whining then
Sandra-sorry you are going thru this pain. I'm sorry if I should have seen this already, but is the muscle issue from your original surgery?
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tanga - it is not whining, don't worry, it is an expression of your concern. We all go through a lot and none of it is fun! It is scary to have a delay, particularly beyond the recommended window for chemo. Just remember that window was established based on an average, and we are all individuals, so try not to worry. Is there an estimate for when chemo will begin?
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Tang, no it wasn't from the original surgery. Two weeks after the BMX I had a second surgery due to an infection I got in the hospital.
One implant was removed along with most of the tissue and skin under my arm and on the side of the implant. Parts of 3 muscles were removed and the rest stitched back together. They are very short and cause incredible pulling from the middle of the new foob to the front of my shoulder. It distorts the implant underneath and causes the whole thing to twist. The shoulder and front of the upper arm ache and spasm at night. My range of motion is bad on that side, compared to the other. Under my arm is just bone covered with skin. No fat, no tissue. BUT, I have a nice fat mud flap a few inches back! (The PS will use that fat and the one on the other side as well to help repair the underarm. That much I already knew would happen in the next surgery.) The repaired muscles have stretched as far as they can so the only way to eliminate my problem is to put in muscle, fat, and skin from another part of my body. That will be the latisamus muscle near my shoulder blade. Some women have the same surgery but the tissue is used to make a new breast. Sounds horrible and so painful. I've had my fill of pain but will have to suck it up and do it, in late Feb or March I think.
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Wow Sandra...un-freaking-real! What sort of infection was it? Did they ever tell you the type of bacteria? I have a pseudonomas bug, was told that it was fairly uncommon and have even had the PS go so far as to say it was probably because I didn't wash my hands. That pissed me off!!
SpecialK-They put down to start 1/23, this Thursday, but it is unlikely. I still have a drain, and IV hopefully will come out early next week. However, I don't think I'll have time to have a port in between all of this. I'm not even sure what the recommended wait period is for me, all I know is the MO says not to worry, but we do need to get it going soon.
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Tang, ooooh, I would have blown my top if they had said it was my fault! How did you avoid killing someone? I never asked the exact name of the bug but I was told it was a "gram-positive bacteria." They had to change antibiotics three times until they found one that would work, Vancomycin, but by that time much of the damage was done and the tissue was necrotic.
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Well, he said "I'm not saying its your fault", but he was! I asked him how I'd gotten it and that is when he said it is usually found in soil so it was probably from not hand washing. There was also small amounts of EColi as well.
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tanga - makes me wonder if you had a combination of a soil-borne bacteria and traces of e-coli, it was more likely something you ate? Often produce has both of these because of some of the fertilizers used for vegetable crops. Can they start your chemo with your picc line?
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ohhh yes, I hadn't thought of that!
MO said she could start it on PICC line, but she'd rather not. She is concerned about having me go in for a surgery to insert the port after I've started my chemo. It is just a waiting game for now, as of today, my left said still feels warm/hot and looks pink. Not sure if the infection is really clearing up like they are hoping it will.
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Hugs Tang! And Sandra too. Sandra I am praying that this last sx will fix your pro lems but it sounds like you will be in for some rehab. Sigh. So sorry.
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Tang: It seems like many of us have to wait 3 weeks after the drains are out. On the plus side, I had my port installed and the surgeon was instructed to "leave the access" lines. I started chemo the next day.
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Wow, you guys are busy tonight.
Sandra, I am so sorry about all you have been through. It too much. I guess we have discussed this, but you have been for a second opinion and a third opinion? I always wanted to go down to San Antonio to PRMA. I hear they are great.
Tang, hang in there. Prayers it will all work out.
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I've got a question...for those that had to have a TE removed, did you have drains after this procedure?
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When they removed my TE I had just one drain-not a big deal.
Babs
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tanga.....I had pseudomonas also. I doubt it is from not washing your hands. Getting it from raw produce is not real common. All my docs thought it was during my mastectomy surgery. It showed up, but didnt culture about two weeks after surgery.
My nurse practitioner friend said that is a bad bug that happens in hospitals, more often to midriff area surgery patients. It should be reported to the infectious person at the hospital. Can't remember what they are called, but once mine was recorded, they were really on touch with me for my other surgeries. Pseudomonas see the expander as an enemy and attack it. I was on IV antibiotics and oral for the better part of two months, while I did chemo and received fills. It kept the infection at bay but didnt cure it. Finally, the PS made them culture it for ten days and it showed up. Everyone freaked out. I was pretty much fully filled so went to surgery with a small possibility of implants and a more liklihood that implants would come out, which is what happened.
I felt so much better pretty quickly. I think some of my crummy feeling I had attributed to chemo when it was the infection. I had a drain on each side for a week after, I think.
SpecialK-I too am thinking about some revision work. I'm having foot surgery on Tuesday so figure I might as well max it all out again, lol. My left side is smaller, so he thinks some of the fat was absorbed. Other side looks pretty good. It's a little weird shaped in one spot, but that is due to the infection and where the skin is thin, so he doesn't want to mess with it too much. I'll have an MRI this summer/fall around my three year mark to check the implants and then probably decide. I'd like them to be about an inch hight too, but that might be asking too much.
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fluffqueen-thank you so much for posting about your experience with pseudomonas. I've been sitting here today feeling bad again, I'm having sharp pains on the side that is infected and wondering what will happen next. I go see the infectious disease doctor Tuesday and the hope/plan was to stop the IV antibiotics at that point. But, I'm not feeling good about that actually happening. I'm still red and warm to the touch, and like I said today I'm having pains again off and on all day. I'm wondering if the TE is going to have to come out, and how that will affect my chemo start date.
In addition to that, I've been back and forth with these doctors about the potential bad interaction between going on Levaquin as my oral antibiotic and being on Celexa. My Primary doctor has said there is no way for me to just stop taking the Celexa cold turkey, and that the potential for an actual problem with interaction is very low. But my PS and ID are acting like this is just not the case.
I have tired head from all of this crap!
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tangandchris, I had no drain when my TE was removed. I had no infection; it was removed due to severe thinning of the skin on that side.
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