Preop Appointment Today

I had my preop appointment today!  Two weeks from tomorrow I will be having my expanders put back in!   It was pretty straightforward, nothing new or exciting really.  I got to peak at the waiting room and recovery room in what I will call the "surgical suite".  There are 2 beds in the recovery area and I have been informed I am the second surgery.  Since I'm the second surgery and I'm supposed to be there at 9 and there is only one operating room, I will almost definitely share the recovery room with someone else for atleast some portion of the time.  This is probably more normal than I'm feeling about it.  I would guess they set up the curtains in such a way that you probably never even see the other person and it probably is infact much like the initial recovery area at a hospital before going to "your room". 

I pointed out the two little weird spots that I have that he confirmed are loose sutures, so if he can readily access them while he's in there, he'll get them out, otherwise they'll still be okay, they'll disolve over time.  He also said I'd have the smaller drains this time, technically "Medium" drains, but they're small compared to the ones I had after the infection, so that will be nice!  And he said I will very likely have them for a much shorter time period.  YAY.

When I asked the nurse whether I should bring something like a breast binder, or a front closing sports bra, she said no, they would be putting something on me.. she's pretty sure a breast binder.  My husband asked if they had something other than pink or blue... (since we currently have 2 blue and 1 pink...)  she laughed and said no.. just pink or blue.. with flowers.   Another pink one would be nice I guess,   I (semi) joked with her that it would be nice to have white, or black.. you know something more neutral..  She didn't like the idea of white because of staining.. but thought black would be cool.  Oh well, maybe someday she'll find herself in charge of ordering them and someone in the future will get a cool black breast binder!  Seriously though.. who needs 4 breast binders?!  And I'm guessing now that I'll end up with a 5th before I'm completely finished.

It really is somewhat of a pain to be allergic to 2 major groups of antibiotics.  It is apparently quite limiting.  So I'm hoping all goes well and there are no infections!

So, back to the time frame.  I will go in at 9 am.  I can't eat or drink past midnight, and have to do the special cleaning the night before and morning of, just like last time.  I will probably be dying of thirst by time I reach the office (that's how it goes, when you're not allowed to drink.. suddenly your more thirsty than you've ever been in your life!  Thats how it is for me anyway)

He said he will probably be operating a total of an hour and a half or so, but there is time on both sides for getting me in there and under general anesthesia and then finishing things up and getting me awake again.   He estimated I would probably leave the office around 1:30 or 2.  I'm a little nervous about this.. I've only had one outpatient surgery before and it was a seemingly much simpler breast biopsy... But if for some reason something doesn't' go right, the actual hospital is just right there... practically across the parking lot.

Nothing will go wrong though.  I am confident.   This will be as easy as we could hope for!

New Countdown! Surgery Scheduled!

I now have a new countdown on my page.  21 days until my surgery for getting my expanders put back in.  YAY!  That is Friday, January 27st.  I thought I'd have to wait atleast a few weeks longer, but this is just in 3 weeks!  The appointment today with the plastic surgeon went well obviously..  He said I looked healthy and he checked things out and said considering what we've gone through things look really good and he didn't see a reason why we couldn't go ahead with surgery as soon as I wanted and we could get it scheduled!  They even offered me January 13th which is only a week from tomorrow!  But the surgeon then pointed out that it is Friday the 13th and he's superstitious so he'd prefer not to do that day (he may have been joking) but that was a little too soon anyway!  I have to get things prepared at work and we have a big "thing" going on in 2 weeks, so I need to stay atleast through that.  It won't be too bad this time since it won't be nearly as long of a leave. 

We discussed the alloderm again and he really doesn't think it's worth the risk.  He's only used it one case of delayed reconstruction (which is what mine is considered now) and it was a different situation all together than what I'm thinking I'd want it for.  He thinks we can still achieve a reasonable size for me (and I'm pretty sure he knows what I want), and if we feel like there is a coverage issue (like need more tissue covering the implant) we can look into fat grafting... he told me to eat more icecream!  I explained that I'm already actually on the heavier side of where I've been weight wise in my life..  So we'll see. 

He said I'd have the drains again for about a week (bleh) and then at some point... maybe a couple weeks (?) we'll start doing the fills and fill for about 6 weeks, then they'll need to sit for a few months.  He's not going to have me take any antibiotics preemptively.  He was saying there some merrit in doing a long course of a particular antibiotic followed by a sulfa antibiotic, but we can't do that because I'm allergic to the sulfa.  But he doesn't think at this point that we really need to do anything differently than he would with someone without history.

This was good news.  I'm excited to get on to the next step towards being done with all this!  And I'll have boobs!!

3 Months Post PBM - Update

I was just responding to a post in a message board, and realized that tomorrow it will be 3 months since the PBM!  Whoa.  And it has been over 2 months since my surgery to remove the expanders which left me entirely boobless.  That is crazy!  I still have probably at least 6 weeks to go until my next surgery to get expanders put back in... I'll start scheduling that at my appointment on Thursday (day after tomorrow).  It's good to know that I'm on the downhill side of the boobless time.

So here is an update of how I am doing with this right now:

My arms are pretty much better.  They tire easily, and feel really weird if I hold them up for long periods of time.

My arm strength is improving.. I can carry my 4 year old.. though it takes more effort than it used to.

I have mostly the generally achy feeling I had before all this from the autoimmune inflammation, I do feel it more sometimes around my would be breast area, like little twinges from the skin and tissue that was affected.

I can sleep on my stomach!!! Yay!  I still mostly sleep on my sleep on my sides, but occasionally will slip onto my stomach..  I'm going to really enjoy this for the next 6 weeks, because I know I'll be stuck on my back once I get the expanders.

I still don't feel sexy... 

I imagine that once I have boobs, even weird expander boobs.. I'll probably feel totally sexy, like "look at me! I have boobs!"

The majority of the day I don't worry about my booblessness.  I've found a system that works for keeping the breast forms securely in place and most days (in most clothes) I don't even worry them.  There are some outfits I try to wear some days that cause me a little more concern.. I have to pull up my tank top once in a while to make sure there is no gap, though I've been assured that someone would have to be creepy to be peering down a tiny gap in my tank top (and they would deserve the unpleasant surprise of nothing there...).

The numbness under my arms seems to be decreasing.. it's still fairly substantial but definitely less than it was.

I tire easily, but I don't know if that is more related to the autoimmune thing, or the surgery... or the combination of both. 

I wore mascara today.  Success!!

Dancing Nipples & Update

Warning - the first part of this post might be TMI.

I was just out of the shower the other morning and I was putting lotion on my arms and legs, and I put the lotion on my hands then rubbed them together, and something caught my eye in the mirror.  I looked directly at the mirror and rubbed my hands together again - as I did so my nipples moved up and down on my chest(not in unison, but alternating..)  It took hardly any motion at all of my arms to make this happen. This of course prompted me to try different motions.  For example, I found that by just squeezing my hand a slight amount I can make my nipple jump about an inch.  It is weird.  I can entertain myself each morning post shower with a wacky nipple show. 

So It's been just over 2 months since my first surgery.  And really for most things I have to consider that I'm only today 6 weeks post op from the second surgery.  I wonder if I hadn't had the second surgery if this is how I would have felt 6 weeks post op.. except with boobs.  Actually I know I would have had a different kind of discomfort.  I would have had hard expander boobs, and that comes with it's own set of issues... that I still get to look forward to - yay. 

I know that I don't want everyone to know every little detail of my experience, but sometimes I'm frustrated that people don't know that this hasn't been easy.  A coworker mentioned that she knew someone else who had this surgery and everything went well and they were recovering just fine like I am.  And I'm certainly happy that person is recovering just fine, but part of me wants to say - "I'm not fine.  This has been really hard, and I'm still in pain, and I still have a LONG way to go."  But I don't.  I just smile and say "oh that's good!"

I'm happy with my timing of all this, I feel like the holidays and upcoming family birthdays (including my 30th!!!) are a good distraction.  I can't help but think of it when I'm dressing, and I frequently feel like I need to check that my fake boobs are in their proper place throughout the day, but I'm doing ok at not dwelling on it.  I think if it were summer I might have a much more difficult time as I'd want to be in lighter clothing and go swimming and all sorts of things that I don't know quite yet how I would manage...

So for an update on how I feel physically..

The pain in general has gotten slightly worse the past couple days and I'm not sure if I should be concerned.. I don't know why it would, but I'm pretty close to my "base level" of pain medication (where I was before the surgery with inflammation from the autoimmune and the lingering chest pain from my lung thing)  So that is good, it's just a little different.. I'm tired and it's hard to say whether that is fatigue from being post surgery or if its from the autoimmune thing or if it is still because of the surgery because of the autoimmune thing...

My arms and are almost completely better.. I only occasionally have little pains in my arms or hands.  My fingers are super sensitive though, like if they slip when I'm trying to open a bottle, that roughness of the lid rubbing against my fingers causes some pain.  Same with hot water, now that I actually feel hot water again... OUCH.  Even in the cold.. I don't remember ever  being such a wimp about my hands in the cold, but I can hardly stand driving glove less in the morning when my steering wheel is cold. 

The skin on my chest is strange.. parts are completely numb and other parts are constantly sensitive and sore  Like the where my cleavage would be if I had boobs still.. that skin is super sensitive, as well as the skin on my ribs surrounding the outter edges of where my boobs would be.  I was disappointed to find that I still had "breast tenderness" with my period.  I had hoped that would go away.. no such luck, pain definitely picked up when I got hormonal.

I can lay on my sides, but because my sides are partly numb/partly sensitive, it takes some work and special positioning of soft blankets to get the position to be comfortable.  but I am soooo glad to not be stuck on my back! (though I know this will come again when I get the expanders back).  I can only occassionlly sleep on my stomach.. its pretty much luck if I just happen to roll into a comfy position, but most of the times when I try, I am not successful. 

I'm working of lifting more and doing more with my arms and muscles.  I'm not working too hard at it because I know they'll just get messed up again, but I'm building towards functioning at a semi normal level and being able to do basic stuff like open doors and jars and staple stuff and use a hole punch, and carry shopping bags (it IS almost Christmas after all.. and I have ALOT of shopping to do) and pull my daughter onto my lap or help her off tall play equipment if she gets stuck (which involves her putting most of her weight around my neck).  So it's coming along, but I'm not training for any weight lifting championships or anything.

So that's that.  I'm getting progressively better everyday, and its a bummer that I'll have to get worse again before I'm done, but for now at least I can find some enjoyment in the silly things that have come about with this - like dancing nipples.

Feeling... flat.

At my appointment yesterday the Surgeon told me I no longer need to wear the breast binder.  My husband took me to a local mastectomy apparel/wig shop. I hoped for the strength to not cry, since just over a week ago I had a total meltdown just trying to call one of these shops. I managed to handle it ok while we were there. 

I tried on a number of camisoles.  The ones that were really soft were too high around the neck and didn't hold the forms very well.  I ended up with a not so comfy purple stretchy tank top with lace on the bottom and a set of shaped forms.  Just FYI - apparently forms don't come in pairs...  the ones I bought came individually (i guess I'm lucky she found two that matched!)

It seemed kind of like wigs were more of their specialty as they didn't seem to have much apparel selection, but they were in the process of relocating their store so they were in a bit of disorder.

I cried most of the way home.  And then for a little while after we got home.  My husband was really good about it, he accepted that I just felt like crying and I didn't want to talk about it.  He actually encouraged me to "get it out" and put on mood appropriate music.

I had thought that once I didn't have drains, and didn't have to wear the binder I could buy things to wear that would make me look normal again. I should have realized that looking normal isnt the same as feeling normal. And even looking "normal" is still different than how I used to look or how I would look if I had boobs - even weird expander boobs.

My chest is so hard. The lower half of each breast is as hard as my breastbone and the skin seems thinner. I imagine it might be better to be in this state with out the preserved skin and nipples, because then it would be smoother. What I have now really kind of freaks me out. I don't like to look at it or touch it. When my finger accidently pokes the hard area like when I'm dressing, it kind of gives me that nails on chalkboard feeling. Even though much of the area is numb, some of the skin is really sensitive to clothes rubbing, so it feels best if I wear something tight and soft and even then I still put in the soft nursing pads.

When we went out to eat and I was wearing my camisole and forms under my regular college gameday attire I felt like I looked normal, however the feeling I had was like when my boobs were sore prior to starting my period, but there are no boobs there! It's just really bizarre. By time we got home I was very eager to get it all off (which is still challenging with my arm/shoulder pain and mobility issues - I totally understand my 4 year old daughters frustration when she gets a tight shirt stuck halfway off her head and arms and needs help getting it off).

Last night I did a lot of web surfing looking at different kinds of forms and searching for things like "mastectomy lingerie" and "modest apparel" (HA!) There's not a lot out there.... this may be tmi for some readers, but I'd really like to find a bra or lingerie or combination of something that I could maybe feel mildly sexy in, I don't think I'll be feeling sexy while nude until I get some boobs again. I think if for some reason I couldn't get reconstruction, I would atleast have the surgeon remove the excess skin (and maybe even the nipples) to smooth things out. But for now, as unattractive as it is, its important for a good reconstruction result.

This is only temporary. In a few months I can start reconstruction again and get expanders in. Just right now that feels like a really long time.

So I Mentioned the Worst Case Scenario?

Over the weekend my infected breast got worse, subtantially bigger.  I also had a negative reaction to one of the antibiotics.. severely itchy and a rash that has now even spread to my face (tiny blisters all over - ICH)

So I got in to see the surgeon today and got the bad news.  We have arrived at the worst case scenario.  We have to remove the expander and delay reconstrution.  I go in to the hospital today at 3, for surgery at five to remove the expanders. and tomorrow I will come home flat chested with drain tubes.  I'm heartbroken.