Big Red Squishy Boob

Argh.  So I apparently have an infection of some sorts.  Yesterday I noticed my right boob looked a little red, so I was keeping an eye on it.  Then both of them started feeling a little squishy compared to how they're normally fairly hard (I never quite understood the hard boob thing until I had hard boobs) 

This morning I woke feeling rather crappy, which isn't so unusual these days.  Figured it might be more than usual because I kept waking up (numerous times) thinking I heard footsteps in the house (which really had me freaked out), so I was pretty tired, but then I had a lightheaded moment in the shower, and then was feeling a little clammy as I watched The Tudors with my mom. 

It was after my mom had left and I got to thinking - It's friday, and going into the weekend, I should probably just give my surgeon a call to see if the squishy boob was a concern.  The nurse recommended I come in and just have the surgeon look at it.  My sister inlaw just happened to stop by and I asked her to take me into the surgeons office.

After examining both of the breasts, SQUISHING them (because they're squishy not hard), he had me lay back on the chair and asked the nurse to recline it so that I was laying at a slant with my head towards the ground (it really felt like I was going to slide off - he laughed and said the nurse would catch me if I did, but he hasn't yet had that happen).  I don't know what all the different feeling from different angles really told him, but he determined I have an infection, and that it looks like I got in early, and so we're going to jump on it and hopefully get it under control with  the antibiotics.  Then he wants to see me again Monday (instead of waiting until my next appointment on Thursday).  He also said that if I end up with an emergency situation over the weekend he would be available.

He said worst case scenario is that we do surgery and I lose the expander and cant replace it right away...(delayed reconstruction) which really seems pretty terrible...  He said there are other potential scenarios between the antibiotics and the worst case, so for now I'm going to just really focus on the antibiotics working.

So right now my left boob is squishy and red and bigger than the other and I have a fever and my back hurts, and I'm a little clammy, and I'm really just not too happy about it all.  Blah.

Drains....

So today is 10 days post-op.  I had high hopes for getting my drains out today at my appointment with the plastic surgeon.  On Monday he had said it would be a possibility.  He wanted them filling with 25ccs or less over a 24 hour period.  So yesterday I was pretty sure I wouldn't get them removed today because I had 25 in one and 30 in the other.  I still was hopeful however because on message boards some people talk about getting them out when they're down to 30.  But no such luck.  He told me we'd shoot for next Wednesday.   So that's 5 more days!!!

If you aren't familiar with drains, They are JP Drains. Here is a picture... not mine - don't worry, I'm not posting pictures of my personal boob paraphernalia quite yet.

So the thick white part is "the Drain" and it is inside my body wrapped around the outer edges of my former breast. 

You can actually see it if you look at my chest, the skin is raised up around it, it's kind of creepy.  Then all that tubing hangs out of my body and the fluid build up runs through those tubes into the bulb. 

I have one on each side.  The holes the tubing comes out of are on my sides... if you are a woman and wear a bra it is in line with the back strap of a bra just outside of where an underwire would fall.

At first we had to empty the drains a few times a day, then we shifted to twice a day, and now I'm just doing it once a day.  Fluid and other bodily material sometimes gets backed up in the tubing, so when its time to empty the bulb I must also squeeze out the tubing.  Then we measure and record the fluid and flush it down the toilet!

So the bulbs hang out rather awkwardly around my waist.  They have to be pinned to something (I use a lanyard) to keep the weight of them from pulling at where they're stitched into my body.  I try to keep them concealed by keeping them stuffed under my shirt which makes me look like I have a weird lumpy pregnant belly.  Sometimes if I'm just hanging out at the house, I put a fuzzy sock over the bulbs.  It still looks weird, but I'm trying to protect my family from the grossness of it.  Better to see a weird fuzzy sock hanging out of my shirt than a plastic bulb filled with bodily fluid. 

So as you can imagine, even if I really felt like going somewhere and doing something, I'd kind of prefer to not do so until the drains out.  So far other than going to the plastic surgeon's office, I've only ventured once to grocery store and twice to the pharmacy.

I WANT THEM OUT.

But I am willing to deal with them as long as it takes for my plastic surgeon to think it's ideal to take them out.  I need to look at the big picture.  At this point I'm willing to do whatever it takes to get the best possible outcome.  I'd rather deal with these dumb drains another MONTH if it would mean the best outcome possible.  Luckily I won't have to wait that long for sure!  There comes a point that they become an infection risk, and they'll pull them out no matter what.  So there is an end in sight...

Recovering at Home

I came home from the hospital Thursday afternoon.  My husband set up our comfy recliner with a sheet and my blue fuzzy blanket.  With the addition of two pillows for my arms it is quite comfortable!  Up until today I was taking my pain medication every 2 hours.  Last night I switched to 3 hours (or when I woke up),   It seemed to go okay, so I will continue on this schedule for a day or so, continuing to try to decrease the narcotics.

I was allowed to shower right away, which surprised me because I had read many places about not being allowed to shower until the drains were out.  So when I got home I took a shower, and my husband assisted with washing my hair.  It felt wonderful to be CLEAN.  He also took care of the drains up until Sunday night when I felt I could/should take that over.

I'm really looking forward to getting the drains out.  They're kind of annoying and pretty gross.  They are these tubes that are hooked up to something that wraps around my breast (on the inside) and dangled about a foot or so out of my body on each side to these bulbs where the fluid collects.  Twice a day we have to "strip the drains"  where we lotion our fingers and squeeze all the fluid/clots sitting in the tube into the bulb, then we have to empty the bulb and measure and record the fluid that was inside.  UGH.

At my most recent appointment with the plastic surgeon he thought we could get them out maybe on friday.. My husband interpreted things a little different, as in *maybe* on Friday, but more likely on Monday.  I really hope it's Friday.

He also suggested that I wear a bra, but specifically he wanted me to wear something supportive under my breast but loose around the nipple, so like an old bra should work.  Unfortunately I no longer have any good supportive bras that aren't a miraculous bra, but I found a couple old nursing bras, and they're working for now.

My right nipple is struggling to survive.  It's really scary looking, it's all dark red/purple, kind of  blackish... So I have to clean it twice a day and thickly apply a burn cream to the nipple and surrounding skin.  I think it is starting to look slightly better and the plastic surgeon seemed more optimistic about it when he saw it yesterday.

The expanders are strange, each breast has one of these expanders and they're basically the same circumference of my old breasts, but without the filling.  So they're big around but rather flat.  Apparently they had removed 500 grams of breast tissue from my left breast, and 450 from the right (the left was bigger..) then he filled about 200-250 grams into the expanders at the time of surgery, so right now my breasts are about half the mass that they were prior to surgery. 

They are really strange though.  They're HARD, and they don't move.  So it kind of feels like they're in my armpit when I try to lower my arms.  I'm assuming that is only going to get worse as we start filling them up.

I mentioned my arms and the numbness in the last post.  They've improved quite a bit.  I have almost full use of my fingers and thumbs back, but from the pointer finger to the thumb of each hand still have a tingly pain in them and my left arm still won't full extend.  It seems to get better each day, though the improvement seems to have slowed... But I am sooo happy it didn't stay where it was, that would have been life changing, in a very negative way!

Anyway, now that it doesn't make me dizzy to sit at the computer, I'll try to post more frequently.

Recap of Surgery Day and Hospital Stay

Tuesday, October 4th, I woke early to shower with the special hibiclense soap given to me by the plastic surgeon.  I was impressed with how smooth it made my skin feel, despite it's extreme medicinal smell.  We woke up the kids and got the youngest ready and my husband was in the car ready to take her to daycare when my mom pulled in the drive way to take me to the hospital. 

Once we all got to the hospital we went up to the second floor and waited only a few minutes before they called me back to go to the presurgery area around 7 am.  This presurgery area was set up similar to some emergency room areas I've seen, where it's just a little room with the front wall being a curtain.  It seemed really busy and there was not much privacy.  I had to explain to this nurse the whole autoimmune thing, why I'm taking the medication I'm taking and so forth.  Then the anesthesiologist came in and asked similar questions.  They then brought my husband and mom back to the room to hang out with me.  I had already been drawn on by the plastic surgeon so the nurse and anesthesiologist decided I could have some relaxing medicine.



Maybe the best picture of me since Tuesday October 4th!!  Nice huh.



I remembered very little from there.  I know that the breast surgeon stopped in, but I don't remember what we talked about.  I was mentally prepared to go awake into the operating room, but I really don't even remember falling asleep.  I was there with my mom and husband and then suddenly...

I was waking up, having a hard time opening my eyes, and my arms were in excruciating pain.  I was crying and I couldn't move my arms at all.  They were asking me what my pain level was at, and I told them a 10, and tried to explain to them that I couldn't move my arms and it felt like they were being crushed.  They put my glasses on for me which was nice, so I could see who I was talking to and differentiate people who were new from people who had been there continuously.  It was difficult for them to get the pain down. They would feed me icechips.  They finally got me pillows to put my arms on and that started to help.  I felt like they thought of me as needy, but I was really scared about my arms and the pain meds they kept giving me didn't seem to be working well enough.  I was in there awake for about an hour and a half that I remember anyway, until they finally got my pain to a bearable level and moved me to my room.

Once in my room they tried taking my vitals and put the blood pressure cuff on my arm, but as soon as it started filling up it hurt so bad I asked them to stop, and they seemed surprised.  From then on I instisted that they did it on my leg, which I did have to remind them them of a couple times as they approached my arms. 

My mom and husband were in the room waiting for me along with some beautiful flowers from my ex mother inlaw.  My mom and husband filled me in on what they had been told about the surgery - I was on the table for 7 hours, everything had gone well.  The lymph node biopsies were negative, and they didn't see anything abnormal in the breast tissue.  No Cancer!

Later that evening the nurses had called an anesthesiologist to come in and talk to me about my arms.  I was really worried that it was lymphedema or some severed muscle or nerves.  I was scared that it could be permanent and how life changing that would be.  His explanation at the time was that it was likely from the position I was in as they operated.  They had my arms strapped down over my head for the entire 7 hours with out moving them.  Apparently during long surgeries the patients arms are periodically moved to avoid this, but in my case with them operating under my arms and then so closely to them, they didn't move them like they mornally would.  He said they would keep an eye on it and someone would check with me in the morning

I had difficulty pretty much the entire hospital stay with the nurses and pain meds.  For some reason they were having trouble getting drugs from the pharmacy, and had to override something, and it seemed to be a big hassle for them.  Late in the first night I expressed that the demoral (sp) didn't seem to be working enough and asked to try something else.  They said we could try the oral "roxies" and that those should last longer and then they could use demoral for the "breakthrough pain".  They allowed me 1-3 Roxies every 4 hours.  The problem was that they got the pain down maybe only a 4 at best and then wore off after 3 hours and took atleast 30 minutes to kick in, and when I asked the nurses for the demoral they seemed to think it shouldn't be necessary and kept reitterating it was just for "breakthrough pain" and I shouldn't be taking it on a regular schedule.  The night nurse that first night finally came around and we got a system down, plus she finally realized that I couldn't use my arms and would give me the pills one at a time in my mouth as my husband held the water with a straw for me to drink from.

The day after surgery, the new nurse was far worse about the pain meds than the first one.   When the plastic surgeon came in he asked if the breast surgeon had been in to see me and what she said about me leaving.  The nurse then chimed in and said she had talked to her on the phone and she had said I was fine to go home if that was okay with him.  And he was obviously aware enough of my situation to realized I was not ready to go home and quite pointedly told the nurse that they weren't going to kick me out.  We needed to get my pain under control and it clearly wasn't.  He then said I could have as many Roxies as I needed.  If 3 didn't work, I could try 4 and if 4 didn't work I could 5, and if 5 didn't work I could have 6, and so on.  So at that point I was somewhat irritated that they had been so stingy on the meds the first night.  He also reitterated that the arm numbness and pain was probably from the position I was in during surgery, but the fact that I could move my fingers indicated it wasn't a severed nerve, but an overextended one and based on which fingers were numb he exactly which nerve was affected.  He said he didn't think it would take more than a couple days, but could possibly take weeks or even months.

The battle of meds continued with this nurse all day.  We established a schedule of taking 2 pills, then 2 hours later taking 3, then 2 hours later taking 2, and so on so that every 4 hours I was taking 5 without that lapse in time with them wearing off and waiting to kick in.  So seems like it wouldnt be a problem right?  well when it was due at 2, i would wait until like 2:15 and ring the nurses bell and a CNA would stick her head in and ask if I needed something, and I would say yes... my pain meds?  and then she'd say Okay I'll go ask your nurse... and then the nurse would come in like 10 minutes later and ask what I needed and I'd say "it's time for the pain meds". And she'd ask me what my pain level was at, and the day nurse would just put them in a cup and put it in front of me, and my husband had to give me the pills and the water, and she'd look at me like she didn't understand why I was being so pathetic.  (maybe I was a little over sensitive and assuming the worst).  as the day went on I gained a little more mobility in my right hand and was able to shakily pick up a pill between my pinky and thumb if they were placed on a flat surface.

It seemed like the day nurse was finally coming around when the shift change came and my nurse from the previous night was back.. I was happy to see her!

Enough about the nurses and meds - I think you get the picture.

My husband was absolutely amazing while we were in the hospital.  For each meal (the hospital I was at has great food and a huge menu)  he cut up my food, and even fed me the first 2 meals when I couldn't use my hands at all.  He'd help adjust my pillows under my arms.  And bring the straw of my icewater to my mouth so I could drink.  I have to say I was not thrilled about being in a position where this level of care was necessary, but he performed this level of care with out making me feel humiliated by it.  I was really impressed with him. (still am impressed).  He'd scratch when I itched and helped with my first non shower bathing, he really went above and beyond, I really beleive he meant the vows, for better or for worse, in sickness and in health.  He's a great guy.

I was happy to have visitors, I enjoyed having people to visit with and it gave my husband opportunities to go home and shower and do things with the kids without leaving me alone (with the crazy nurses).

Initially I had thought it would be a 3 day hospital stay, so when they told me I would leave the next day I was shocked!  And I ended up not leaving the next day because of my numbness in my hands and my uncontrolled pain, but I tell you what - on the second day, once they pain was okay and I could semi use my hands, I was totally ready to get the heck out of there!!

I'll try to post more tomorrow, to bring events up to date.  I'm also going to see about creating a picture diary and attaching it to the blog, but having it separate so that if you don't want to see pictures you can still read the blog.

Goodnight.

The Plastic Surgeon - Pre-op

Today I had my pre-op appointment with the plastic surgeon.  He was much more personable this time.  I didn't get alot of new information.  We discussed again the location of the incision.  He still thinks it's too risky to do the incision under the breast, so under the nipple and out each side an inch or so.   

As required, I've stopped taking my anti-inflammatory medication, so hopefully it doesn't get too bad, but that's what the hydrocodone is for right?!  I mentioned that to him too and he said that is fine, that what that means to him is that I may just need more (higher dose?) of the pain meds after surgery, since my body is accustomed to taking them.

I had read lots of places about patients being prescribed anti-anxiety medication for the night before and morning of the surgery, he said he doesn't do that because he wants to ensure the patient can stand up when he needs to draw on them, (which he'll do the morning of the surgery).. so okay.  I've had surgery before with out anti-anxiety meds.  I can do it again!

He did ease one of my concerns by saying the expanders would be partially filled at the time of surgery.  So I won't wake up complete flat chested!  They'll need to somewhat fill out the skin that is left behind.  Then after a few weeks we'll start fills, which if I'm remembering correctly I believe he said weekly.  Then after we achieve the size we want, we'll leave the expanders in for probably about 3 months before having the exchange surgery, to (silicone - yay) implants.

He said we'd kind of have to play the reconstruction by ear.  We'll have to wait and see what my body will tolerate before we can know what kind of results to expect. 

Of course, this was the time when we had to read, and be told, all the horrible things that could happen.  Ranging from having scars (duh?) to deadly infections and multiple surgeries, skin dying, and bleeding risks, and the potential to need to take muscle and skin from my back to repair damage (yikes!).  But I know all this.  Nothing surprising.  Having months to prepare has definitely given me time to look up and read about pretty much anything you can dream of related to this procedure.  I know what the potential is.  I'm just hoping for the best! 

I am willing my body to have the best recovery possible.  I want to impress him with my amazing healing!  When I had my VATS lung biopsy the doctors were very impressed with my healing at my follow up, (but then they mentioned they are used to seeing patients in their 60s and 70s at these types of things... who don't typically heal quite as nicely as 29 year old...)

Interestingly he also pointed out the slight asymmetry of my breasts... apparently the left one is slightly larger than the right.  I know most people (if not all?) have at least this slight difference, but I had always thought mine were VERY close.  but sure enough after he pointed it out, I could tell.  I wonder if part of pointing this out feeds into the overall need to understand that I didn't have perfect breasts to begin with and shouldn't expect them to be perfect when we're done.  Which of course I understand.  I get it - I'm cutting open my breasts and removing their substance, to have them sewn back together containing something unnatural.  I get that they won't be as glorious as the ones I grew naturally.  But again I'm hoping for the best....considering....