September 2014 Surgery Sisters

enlm20Erica

Sandra... I've been crying alot myself.. effect from the anesthesia or not, what we're dealing with is not easy its hard, we try to be strong for "everybody else" but at the end of the day this hurts on so many levels. It's good to be positive and that's what we are most of the time but we're human and we feel..the truth is, this sucks from beginning to end and we have no other choice but to deal with it, and that warrants a good cry every now and then. I have a great respect for you all.. my sisters. Others can only imagine. *2am tears*

Jumpship

fever anyone? Ideas how to rid of it? 100. Ps didn't seem bothrred. I'll call oncology in the morning but it takes an act of God to get them to care. 12 hours just to get zofran. Any ideas welcome.

EverForward

I got my last two drains removed today!!!!! It only took 30 days, but they are out and I am no longer "RoboHeather" (as my friend started calling me when I came home from the hospital with 2 pain tubes and 4 drainage tubes sticking out of me). I cannot wait to take a shower! And leave the house without worrying about how to hide my drains under my clothes. 

What a roller coaster. For some reason, on bad days I was pretty good at suppressing my tears, but then on good days I would get emotional very easily. It's best not to try to understand or rationalize our feelings as we go through this hell. Maybe that's why I rely emotionally so much on you ladies on this board rather than my in-person loved ones. When I complain about my drains or about my gray hair, loved ones will try to find a silver lining or persuade me that "it's not really that gray." But you all understand and just give virtual hugs without needing to "fix" my feelings. 

Flannery

EverForward:

Your last comment is right on! Not only that, but I think being able to vent here about all the new pains, disappointments, and humiliations that this process brings actually helps to preserve and protect our relationships with loved ones. No matter how much they love us, this process does drag on for a quite a while and they have their own life challenges to contend with - compassion fatigue inevitably sets in at some point. I have been on that side of the equation myself, both loving the person/patient to death and willing to do anything for him, but also dying a little inside when each new symptom brought on another round of endless anxiety and kvetching. The fact that I can bitch here about new fears and indignities, not to mention get more information that helps to lessen my fear and anger, means that I can give my very compassionate husband the Coles Notes version of my medical/emotional status (maybe this is Sparks Notes in the US?) when he gets home in the evening rather than the unabridged stream-of-consciousness Ulysses version. Of course I share important developments and feelings with him, but I think all the torrid details just make him feel anxious and helpless because there's nothing he can do about most of it except sympathize. And clean the house when I ask him to - definitely need to preserve some feelings of helplessness that can be channeled into positive action! :-)

But in all seriousness, I really believe that resources like this are of tremendous help in getting couples through this intact. Honestly, I have no clue how people dealt with crises like this before the interwebs. I know there were support groups, but this goes way beyond that. So right there is something I am very grateful for. Not only that I am having my cancer in a time of imperfect but unparalleled treatment opportunities, but also at a time when I can connect with women from all around the world who are going through the same thing, 24/7. Such a blessing.

May this be a Good Day for all of you.

clmtootie

EverForward that is great your drains are all out!   I couldn't imagine having to have them as long as you did! 

With mine 2 were removed on day 8 and the other two day 10.  Although they were all ready at day 8 the BS didn't want to remove them all at once. 

enlm20Erica

Saw my PS today. .. All drains are gone! Will start fills next Thursday. Still can't pick up my babies yet but all is well and progressing.  Keep the faith ladies. . Much love to you all, for truly this is a battle.  (((Hugs)))

clmtootie

That is great news on the drains enlm20!  Good luck to you in the fills. 

enlm20Erica

clmtootie, thanks and welcome to the group! Hope your recovery has been a smooth one. Any fills yet? 

sandra4611

So I have this weird dent near the sternum after surgery #5 last Friday. I saw the PS for the first check up this morning and he says I probably will just have to learn to live with it!! It's because Alloderm was added in that area too. The left implant was migrating towards the right one. Now it's not going to move anymore, but DAMN, I wish someone had told me about this before. My husband just blows it off and says, "What? You expect perfection?" and says I should be happy.

I could slap him.

Picture shows purple surgical markings which are fading gradually with every shower. (They show where the top of the 410's are.) Fortunately my PS allows showers even with drains (after 48 hours.) Drain still pumping out 40-45 cc a day, which is normal for me at 6 days post op. I've had drains as long as 3 weeks with other surgeries. My PS insists drains are no more than 30 for two consecutive days before he pulls it, but he is anxious to get this one out. He told me to call him at home over the weekend if the output goes down to 30. I'm usually on IV vancomycin for 10 days - 2 weeks after each surgery, but this time they weren't able to put in a PICC line so I could continue IV vanc at home. So I'm on an oral antibiotic and the PS is nervous it's not enough. Drain is a perfect place for an infection to start.

sandra4611

Lilith08

Sandra, I don't know if this is what you meant by one implant migrating toward the other, but I had come across something about that a couple months ago. I think it was in a video by this YouTuber (but my computer won't play videos anymore because of a plug-in issue, so I can't look for it):  https://www.youtube.com/user/CourageIsMyStrength

I think the gist of her problem was that the tissue (or muscle?) can get separated at the sternum, allowing this drifting of implants. Just looked it up and it's called symmastia. Anyway, there's a special "thong bra"--a bra with no cups, but that provides compression to the sternum. This may not have anything to do with your issue, but it's the only thing I could come up with. It doesn't seem right that your PS should just shrug it off! Did this shifting just happen with this last surgery? Was there a problem from previous surgeries that required the Alloderm? I really hope you can get a more satisfying answer than "live with it." 

sandra4611

Lillith,

Thanks for the link. Interesting. This is my first time with Alloderm in all these surgeries. My situation is different because I had so much damage from the infection a year ago, my anatomy isn't the same as most women. The muscles were repaired in surgery #4 in March. During the intervening 6 months, those still too short muscles caused the left implant especially to "misbehave" due to pulling in directions a normal implant wouldn't be subject to. My PS reinforced the sternum area also with Alloderm to keep the left implant over on it's own side. I'm willing to sit tight and wait it out for awhile. After all I'm only 6 days out and things will change. (But it still worries me deep down.)

noonrider

Sandra4611: You win the "I went through hell to get here" award! 

I was told to expect some dents and divots, and that those would get fat grafting later after my exchange. I have HUGE side boobs. Like a WHOLE boob on each side. I would need a 4 cup bra if I was wearing one. LOL I'm told most of that will pull forward as I gain projection with the TE's and what is left will be lipo-ed at the time of exchange. 

Flannery

After my 40cc fill yesterday, I too have some dreaded side-boobage beginning. Basically that is where all the fluid went, whereas I was hoping it would move into the upper pole of the TE. My regular underwire bras no longer fit as a result, so I am officially relegated to sports bras. I'm praying that the side edge of the TE is tapered fairly thin so it can't expand much further, or I am going to and up with a very W-I-D-E and pendulous breast as more fluid is added. This seems to be such a common issue with TEs but I don't understand why the PS's even want the pocket to dissect that far off to the side. The final implants don't end up there so why create undermined skin flaps that just need to be closed down later? Is it an intentional strategy or just bad 3D design of most TEs?? Could my TE be a bit too large for me (had 370g tissue removed at mastectomy but this is a 650cc TE that currently contains only 290cc of fluid)? My natural breasts do/did not venture that far back along my chest wall, but stayed politely near the front. The nurse who I see for my checks/fills is super-nice and great at what she does, but has no answers to these questions that I pepper her with.

Oh well, I just gotta trust that my PS knows his business and all these mysterious things serve a purpose and contribute to the quality of the final product. I have done some research in plastic surgery textbooks but can't seem to find quite the answers I want. Presumably I will have at least one pre-op consultation with my PS before exchange and can torture him with all this at that time...

noonrider

Flannery said, "I have done some research in plastic surgery textbooks but can't seem to find quite the answers I want."

We just need to find out the technical term for side boob and then you can probably find the info. LOL

armamp95

My drain was removed yesterday, during the procedure to install my port, 4 weeks after Mx ... so it all happened while I was knocked out.  It is great to be done with juggling the JP drain, and I will be thrilled to take my first shower in a month!  As an arm amputee and widow, I had worried incessantly about managing the drain on my own ... I was always a bit paranoid about inadvertently pulling it out, but did everything slowly and carefully, anchoring the tube in place with my stump.  BS had thought that I would have to enlist helpers, but I sent my SIL home after two days.

linda505

yeah ever and elmn on getting the drains out!!  That really makes all the difference in how you feel - kind of allows you to be a little normal in some ways.  

Sandra - ugh on the dent - you really just deserve perfection after all you have been through.  But alas I don't think that really happens much in this process - I also have a little dent above my left implant.  The tumor that was on my left side was above my breast and that is where the dent is.  It is above where the implant is.   They took alot of tissue there in order to get clear margins as it was so close to my chest wall.  My PS said that he could try to address it with fat grafting in the future - but at this point I think I will just live with it as who knows what other complication I would deal with if I tried to correct that.  I really hope that your dent gets less and less noticeable over time.  Others just don't get how we want to be somewhat our old selves after all we go through.  It is easy for someone who hasn't done this to say live with it.  They just don't understand - they think they are helping.  Sending all my "no infection" prayers and thoughts to you!!

Everforward - I had to have a talk with my loved ones about my down days and times.  I finally said "please don't try to cheer me up when I am expressing how I feel - I am allowed to feel this way and I need to tell you - just hug me and tell me you love me - that is what i need to hear".  They want to make it better and think that giving you a pep talk helps - I can't get mad at them about it but I needed to make them understand that when they said things like that it actually made me feel worse.  We are grieving just like we had lost a loved one - we actually did - we lost part of ourselves - we need to grieve - it is part of the process.  Those days for me are getting fewer and farther in between - but I still have them.

Noonrider and Flannery - most in here call those side boobs "dog ears".   I had them a little and still have a bit after exchange - but the majority of it was corrected during exchange - my PS said he could do more work later and get rid of more of them if I wanted.  I don't think mine were caused by the fluid in the TE - it was the fat/tissue that was left on the sides after the BMX.  Think of it like mound and you remove the highest area - the middle - and then what is left is now higher on the sides.  Now you start filling the TE's and it pushes the tissue to the sides even more which causes them to become more apparent.  This may be TOTALLY wrong lol - but it is what I thought as it was happening. 

EverForward

Ah yes, the side boobs. Part of it is puffy tissue and part of it is the TE that wraps around the side. It was explained to me that simply stretching the tissue straight forward would put too much pressure on only a small part of the tissue and so widening the area to be stretched spreads out the burden, so to speak. I was also told it would all work out after the exchange surgery.

I had a major dent on one side from my nipple toward my sternum. It's evened out with each fill, but it's still noticeable. All of these weird bulges and dimples are normal with the TEs.

clmtootie

Yes enlm20 I have had three fills so far!  The first two fills didn't really bother me to much.  However, that could be because both times they did it, they also pulled drains then immediately did a fill.  The third fill caused more pain for the rest of the day, but by the next morning the pain level was better.  Make sure you have some ibuprofen to take when you go for your first fill! 

I probably only need one to two more fills to get me to the size I want, since the three fills have already gotten me to the size I was before surgery.  If I'm going through all of this I might as well go just slightly larger than I was before surgery!  I was very small before! 

sandra4611

Clmtootie, the size you want to end up being can have little to do with the TE size you are looking at now. Some doctors tell their patients to let them know when the TE's are the size you want. I think that is part of the reason why so many women are disappointed after the exchange. Implants are much smaller than TE's - maybe not half, but a third at least. Implants do not stick out (project) like TE's do. I had an 800 cc silicone round implant on one side and a TE on the other. By the time the TE was filled close to 600 cc's, it looked twice the size of the implant. At the end, I got to 740 cc's in the TE. It looked like a fake hooker boob, ready to explode. When wearing a bra, I had to put a poofy prosthetic foob over the 800cc implant to make it look similar in size to the TE...even though the TE had less cc's.

It's a surprise when you first get implants. I thought I looked like I had "man boobs". Wide, kind of squarish, and more like the top half of a hamburger bun than a breast. They do not get bigger or stick out more, but they do smooth out, drop down some and become rounder with a more natural look. Be aware that you will not have a cone shaped breast. You will have a mound that will assume a more pleasing look in the coming months. Be patient. Many of us have revisions but not until some time has passed and you have your final shape. It could take at least three months.

enlm20Erica

clmtootie, yeah it may not take me as fills either I was very very small before. I'm looking forward to my first fill tho. . One step closer to finishing this long process.

In other news...I had THE worst break down today. I'm kinda known to be a very independent "I can do it myself"kinda girl. I'm 11 days out from surgery and drove myself to my Dr's appt this past Thurs, I said "okay driving wasn't too bad, we're progressing" so Today I saw the twins were running low on diapers, and the fridge was looking a little empty so I told my husband let's take the twins to my mom and go grocery shopping. I got up, got my own self cleaned up and dressed and (against my husband's wishes) I insisted to drive us to the store... came home EXHAUSTED wanted to immediately lay down, wanting to change into something comfortable i took off my jeans, that went good. But my shirt was a different story, I know I should wear button downs but I'm "feeling myself"today so I put on a shirt that goes over my head. Well of course I got stuck in the shirt lol (its funny now) I tried for 5 min to get out of that shirt until I finally went in the kitchen where my husband was, he was putting up the groceries and in the saddest most pitiful voice i said "can you help me get out of my shirt" and i let out the hardest snot sniffing long pause cry, I think I've ever had through this whole process from diagnosis til now. Truth is,  I want to be "normal" again so bad, but honestly I'm just not and that reality hit so hard today. The shirt was just a reminder of it all. 

EverForward

enlm20, I'm sorry that your story made me laugh. I had a similar experience in an Ann Taylor dressing room!  I had been so good about not putting on tops I wouldn't be able to get out of, but it was a "I'm feeling almost human" day and so I went shopping. I put on this cute top and got trapped. I almost had to call the attendant to help me! But I managed to shimmy out of it and keep my dignity.

Flannery

enlm20:

I had almost the exact same experience. I've had big problems with bra comfort due to my TE, and now nerve pain. I bought a bunch of bras that didn't help, then out of desperation started trying my old pull-over sports bras. One of them was particularly snug and though I managed to get into it, I got stuck getting out of it. Had the same meltdown and had to go out to the garage in my pitiful state and get the husband to help. Only difference was I was so mad about it all that I made him cut it off me with scissors. Which I now regret, as it was one of my favorites and I was hoping I would be able to wear it again one day. I will also add that my husband laughed his ass off throughout this despite all my tears and distress, which did help a bit.

enlm20Erica

Everforward, lol don't worry it made me laugh too! I couldn't imagine getting stuck while in the fitting room...glad u made it out lol!

Flannery, lol!  I contemplated the scissors too! before I asked for help, I was gonna cut it straight down the front, then I realized I really really liked the shirt lol. 

Ilovecoasters

LOL I tried to put on my FAVORITE  top and got painfully stuck.  I cried like a baby for almost half an hour.  My husband finally came in the bathroom to check on me and offer help.  I am beyond stubborn and wanted to work through it alone.  Things ended with a pair of scissors.  . 

I've had a few marathon cries lately.  There is just so much to take in.  Yesterday was a visit to the PS for a fill, an echocardiogram and chemo school.  Awesome to hear possible side effects of Leukemia and heart disease on top of all the other nasties.  

enlm20Erica

Do any of you find yourselves short of breath easily after BMX? if so, does it get better? Its been about 12 days since my surgery.

sandra4611

That's probably due to sternum healing. You don't take big breaths because it is especially sore there. My breast surgeon took not only my breast tissue but also all the fascia (the silver covering) off the muscles of my chest. That's a lot of damage and it impacted how deeply I breathed. Did they send you home with an incentive spirometer? That's the plastic device they give you in the hospital. You suck in and try to keep the marker at a certain point. It helps to use it often to expand your lungs. Also bring down fever quickly.

sandra4611

Getting stuck...I am the Queen of getting stuck trying to get a sports bra off over my head. I was at Ross, 2 weeks out from surgery, and the announcement came on the loud speaker that the store was closing. There was no one to call. I couldn't go out with my Frankenstein chest hanging out. There wasn't enough time to call my husband to come rescue me. I was struggling and began to sweat, which made it even more difficult. Finally I just yanked it as hard as I could and I HEARD and FELT something like Velcro ripping. Yep, sure enough I had torn internal sutures and it set my healing back several weeks plus HURT like crazy and had purple bruises.

I didn't know you were supposed to step into sports bras. No one every told me.

sandra4611

Maybe we should be the September Stuck after Surgery Sisters.

enlm20Erica

Sandra I can always count on you for a good laugh. . Sorry about the set back tho...But I can just picture being stuck and they say the store is about to close. .(In tears laughing) : )
Oh and yes I have the spirometer, haven't been using it like I should, but I'm about to start. Thanks as always lol