Just when I was starting to feel normal...

Good news!  My autoimmune issue seems to be under control... or not bothering me.  I have alot more energy and I don't feel sore all over all the time.   It's nice.  The last couple of days my right boob has started feeling a little odd.  It kept me up night before last.  It kind of felt like the implant was rotating or something.  Maybe like the magnetic port was trying to get out through the top of my breast... It was fairly uncomfortable.  I will ask the PS about it today, at my pre-op appointment.

Yes that is right - Pre-op appointment!!!  June 15th is the date for my exchange surgery.  Two weeks and two days away.  The week before hand my husband will be out of town, so I'm a little concerned about how I'm going to get everything ready (at work and at home) without having his help.  He also won't be back until really really late the night of my surgery.  My mom has very kindly offered to spend the day/night with me and shuttle the 5 year old around until he gets back.

I have somewhat mixed feelings about the surgery.  I mean I'm excited about being that much closer to being done with this part of my BRCA journey, it will be nice to have the surgeries behind me, but now that i'm feeling so much better, I kind of hate to go into surgery again!  Feels like it will be a set back, back to lifting restrictions, and resting alot and fear of infection, and concern about wound healing, and what if it like sets off my autoimmune thing again, BLEH. 

So I'll just try to look at the positives.  I really do like napping and resting.  I read other blogs with people who are so eager to get back to exercising and being active.  And I can admit lately now that I've been feeling well, it's been nice to go on bike rides (got a bike for mother's day!!) and it felt good to walk the 5k Komen Race for the Cure with my daughter and co-workers.  But seriously, I could be very content if I was allowed a nap every afternoon..

Ok, so speaking of feeling normal.  I had to take my older daughter to the aiport this morning because she is spending the summer overseas with her father.  It didn't even cross my mind until last night around 7:15 on my way home from work (long day) that I might have an issue going through security with magnetic ports on my breast implants!!!  I researched online and asked on the FORCE message boards (while trying to ensure my daughter was set to go)  All I could really find was that I should carry an info card.  well... too late for that!  I don't have one and there wasn't a way to get one from the PS between last night and 7 am this morning when I needed to be at the airport.

So I told the lady TSA agent checking IDs and passes (I get an escort pass since she's a minor so I can see her off at the gate), that I had tissue expanding implants for breast reconstruction with magnetic ports and asked what her recommendation was when I got up to the checkpoint, she said she knew what I was talking about and that the body screener would be more likely to detect them, but it would limit the secondary screening to that general area of my body, where if I went through the metal detector and set it off I would potentially have a more thorough secondary screening (full body pat down?)

I decided to go through the body screener, and sure enough it caught them, so they pulled me aside, and another female TSA agent came over, I explained to her about the implants and she agreed that was likely what it was, asked if I was sore any where and said she'd be gentle and quick.  Then she just very lightly patted around the top sides and did a quick swipe under the breasts, and that was it.  I can see how someone could feel embarrassed by it being out in the open like that, but I didn't have a problem with it.  It was quick and painless and assured the airport I was I wasn't smuggling a bomb in my bra.    HA.  just realized the irony in that.. BRCA + people sometimes refer to their breasts as time bombs before mastectomy.  I got rid of my time bombs and now I'm suspicious at the airport. 

I took the day off work today.  I'm glad I did, I'm super emotional.  No way I could have gone to work.  I remember last time I took her to the airport I got a little teary but it wasn't like it was a new experience... seeing her off like that.  It just hit me really hard this time.   So now I'm going to fix myself up and try to look like I haven't been crying all morning to go to my preop appointment.  HOPEFULLY I'll hear what I want to hear about the implants!

I'm a "Previvor" - are you offended?

Ok, so I was casually surfing the internet for some "previvor" gear I could wear along with the t-shirt my work gave me to wear at the Komen walk next weekend, when I came across a message thread (on babycenter.com of all places) talking about whether or not the term "previvor" is offensive. 

I read all 6 pages of posts!  I was horrified by the posts on there.  There were a good number of sensible people who either weren't offended or acknowledged they didn't have enough info to feel one way or the other.  But the people who were offended - wow. 

I'm pretty sure I had a post about being a previvor early in this blog, but I'll cover it again.

From the FORCE website (www.facingourrisk.org)

Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The term specifically applies to the portion of our community that has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

To me, the point here is that we, (this group of people - and myself) are in a unique, life altering situation and it's helpful to have a term to define ourselves by, especially when so many are involved in the breast cancer awareness efforts.  It's so much easier to say "I'm a previvor" than say "I have a genetic mutation and extensive family history and have an 84% risk of getting cancer myself, and it will likely kill me like it did other women in my family before I turn 40, and there is a 50% chance I passed this on to each my of daughters and I live with fear for my life and for my children every day".

The main point of contention on the discussion thread seemed to be the misconception that "previvors" are just out to get attention and get the same sympathy, or "steal the thunder" of cancer survivors.  Keep in mind, not a single one of those offended indicated that THEY were a survivor.

Some of them said that the term previvor implies that cancer is preventable and survivors simply didn't do what was necessary or try hard enough to prevent it.

One person went as far to say that they were offended because the term is attempting to draw similarities between being a "previvor" and someone who is actually a "survivor" of breast cancer, and goes on to compare "having a double radical mastectomy back in the days" (a survivor) to "having a little breast tissue removed".(a previvor)

I wish my baffled speechless silence could resonate here in this post.

But since it can't, I must find and apply words -

PRE in previvor is about a predisposition (higher risk), and of course knowing you're at higher risk causes some (most?) to want to do what they can to TRY to prevent it.  I still don't understand how that indicates that a survivor (or someone who sadly didn't survive) didn't "try hard enough".  I think we all know that isn't the case.  I know that no matter "how hard I try" I might still get cancer, and it might still kill me, and I hope no one will think less of me for it.  I certainly don't think less of my family members who lost the battle.

The comparisons of surgery is just ridiculous.  Of course someone who goes through Chemo and radiation and gets horribly sick and loses their hair and has poor healing from their mastectomy due to the treatment, has a much harder go of it that the preventative route - THAT IS WHY WE DO IT PREVENTATIVELY.  

But at the same time - and I'm sorry if this offends - I had a surgical biospy 4 years ago to remove a tumor (which turned out to be benign).  Had that tumor turned out to be cancer,  I could have left with that half inch scar and tumor completely removed and called myself a "survivor", and that in no way compares to what I've been through the past 2 years since learning of my BRCA mutation, with the fear, the mastectomy (4 inch scars across each breast) the complications (nerve damage, nagging pain, less than ideal cosmetic outcome), and the future which will include removal of my ovaries, early monopause (which increases risk of heart disease) and knowledge that sadly it likely won't stop with me because I already had children before I knew - and my children have a high risk of having to deal with this too.  It's far from simply being "a choice I made".



"The Cure Begins with Education"
fitting huh?

The reason I was looking for previvor stuff to wear at the Komen walk wasn't because I was hoping to steal attention from anyone else... or get sympathy...  I thought the event was about breast cancer awareness, so I could walk the walk in simply my work issued event t-shirt (which is really great actually), which is still for a great cause, but I kind of feel like I should seek out opportunities to go the extra mile for promoting awareness of breast cancer. 

Does that hurt anyone?  Does THAT offend?  So if wearing a pink and teal ribbon caused someone to ask me what that was about, I would have the opportunity to tell them, no I'm not a survivor - I'm a "previvor" and then turn my experience thus far with hereditary breast cancer into something potentially helpful for someone else.  I was looking for a conversation starter. 

Maybe by spreading awarness of hereditary breast cancer and FORCE and "Previvors", people my age who never would have thought they were at risk would look a little closer.  Maybe people would make the connection with seeing my daughter standing next to me, that risk doesn't start when you're 40.  Maybe people wouldn't be so closed minded and insensitive to a group of people who are facing their own very real nightmare, even if it's not the same as having cancer (again I never said it was).

The dreaded colonoscopy!!!

Okay, so Friday I had my colonoscopy. I have to admit, it REALLY wasn't that bad. I think the worst part was the fasting.. I like to eat, and I get really irritable when I'm hungry. Even the cleansing part of it... When I compared it to how I felt with all my issues, that led me to this in the first place - it wasn't nearly as bad as the nights I spent sick and and in pain. Though I might not drink blue gatorade again for a LONG time.

As for the actual procedure. I went in first thing, and got hooked up to an IV, they then took me back to the procedure room and I had some issue with the blood pressure cuff squeezing me too hard and I got nervous about it (since my mastectomy, I worry about arm numbness) and asked them to move it to my leg. They were all very nice and seemed to want to make me comfortable.  Then they gave me the sedation and I was OUT. I do have some vague memory of very briefly coming into awareness and having some discomfort, and then quickly going out again.

Then I remember very little about waking up after and the doctor talking to my mom, her taking me out to get something to eat, then napping while she watched Borgia on Netflicks until my husband came home. I felt really groggy that day, but otherwise okay. I felt absolutely fine the next day, maybe even better than I felt before the procedure.

I have pictures... basically all he found was an ulcer which he thought might be caused by my anti-inflammatory medication. Otherwise it looked good I guess. He took a biospy of the IC valve, and if that comes back showing any signs of IBD he may recommend a CT. So now It's just waiting again for the results of that.

6 Months Post Mastectomy!

So 6 Months ago I was in the hospital my first night after my mastectomy dealing with my horrible arm pain, with no clue what was to come. 

Now that pain is competely gone luckily.  But geez this last 6 months has truly been unpleasant.  It could be worse though, and thats the important thing to remember, though it is hard for me to not think of how much happier I might have been with my results had I not had an infection. 

But really, who knows?  It wasn't like I ws particularly happy with them before I got the infection, but I still had hope of them being what I wanted them to be.

I had a happy surprise for my 6 month mark though!  I had an appointment with the plastic surgeon today, and he seemed really happy with how I was doing, and I got a fill!  WOOHOO!  Last appointment he had left me with very little hope, but now my hope is renewed... I know I'm still not getting the size I wanted originally, but atleast I might get a little bigger than I am now. 

We discussed how they're kind of like half filled bags of water... well exactly thats what they are he said.  When I lay on my side they do this weird wrinkle thing.  So that is partly because they're not full, and partly because my skin has kind of naturally stretched, so we weren't really filling to stretch my skin this time, but to fill the area thats there.  I asked if maybe between now and my surgery, my skin might stretch more "naturally" and be able to accomodate a bigger implant.  He thought that was unlikely, but he'll still TRY for the 350 cc implant (versus the 300). 

I also talked to him about how my left one is off center.  Its more towards the outside of my body than my right one, and I asked him if we could fix that in the exchange surgery.  He said we could TRY.  Good enough for me.  I know he doesn't want to build my expectations too high, as they tend to be very high to begin with.

New pictures posted of where I'm at and one showing the off center thing.

Funny (?)  thing, Its kind of hard to tell how numb something is by touching it yourself.  Because you can feel it with your fingers, but my nipples are TOTALLY numb.  My husband poked them today to see if I could feel. and NOTHING, if I hadn't been looking I would have no idea he was touching them at all. 

I've determined the discomfort I feel when getting a fill (which is very minor) must be the muscle reacting as the needle goes through it, because the skin does not feel the needle pierce it.

Anyway, these are all things I've been getting used to for the last 6 months, and really I feel the worst of it is is over and where I am at is not all that bad.  The pain is mostly gone.. I just get some pain on my sides (just below my armpits) when I do alot of work with my arms.  I can sleep on my sides and even on my stomach if I position the pillow/blankets right.  (I guess we'll see if thats any more difficult after this fill).  And even though I'm dealing with this autoimmune thing and scared about whats going on with that, the weight of the fear of breast cancer is off my shoulders. 

Geez, what now??

I've mentioned my autoimmune disorder in previous posts, now that has suddenly become my health focus.  My inflammation levels are elevated (according to my blood tests).  We still don't know what is causing it, but now I have other highly unpleasant symptoms in addition to the fatigue and achiness... lets just say its unpleasant and related to my bathroom habits.  My rheumatologist referred me to a gastroentonologist, and based on my file, they scheduled me for a colonoscopy.... yippee.  Seriously.. I'm 30.  I don't think this is right, but they're wanting to rule out things like crohns disease.  

Even worse, the research I've been doing leads me to the conclusion that prolonged/chronic inflammation can be one of those cancer causing triggers.

So lets see, I'll make up a visual example of the scenario at hand... ok if you look at my hand like it would turn into cancer if I lost all my fingers (suddenly my hand would grow and morph into something deadly and uncontrolled trying to consume my body and kill me) and the fingers are the only thing keeping it in check...  So automatically I have ATLEAST a couple fingers gone because of the gene, next I have a finger knocked out due to environmental factors, and another finger or two due to past lifestyle choices (smoking, drinking, poor diet), then inflammation sets in and breaks off the last finger.  Now I'm not sure if the gene got rid some fingers to start with, or if it just made it easier for them all to fall off... either way out come is the same.

I'm trying not to be fearful.  It's hard when I feel so terribly and I don't understand why.  Just like when I had the lung issue last year, I find myself wondering if its possible that somehow I developed some aggressive ovarian cancer that has metastasized to my colon.  I imagine them calling me in after the colonoscopy and saying they found cancer, and they were surprised because I'm so young, but then they realize its not colon cancer, it's ovarian cancer!   I know I can't let myself get caught up in that kind of thinking.  Its just hard to not go there at all.

I feel like a freak.  I'm scared about this crazy stuff.  And then I have all these other issues.  I feel so bad for my family some days, particularly my husband.  What did he get himself into?  

Today when I was called by the nurse to get things in line for yet another procedure, she asks me about if i've had any surgeries... I list them all off, and theres part of me thats disgusted hearing it all.  then what medications I'm taking.. I list them off, and she asks why I'm taking them, and I have to explain, and I just sound so weak.  She asks about my family history of cancer, And its the C word.. and I just want to run away, but I have to stay on the phone, and I say well I tested positive for the BRCA gene mutation.... thats why I had the mastectomy.  "Oh," she says.. and I know she doesn't get it.  Not like I should expect her to.  So I tell her theres lots of cancer in my family.  and she says "ok, but do you have any first degree relatives, with um, the same.... um situation...?" well I got the gene from my dad, he's had skin cancer.  At this point I just want off the phone so bad... I'm so tired and sick of it all.  She asks if I have any mobility issues, and I don't know what the procedure entails, so I tell her I have temporary implants in and they're not comfortable for me to lay on my stomach... and they have magnetic ports.   "That shouldn't be a problem... but I'll make a note of it".


((sigh))

Now I have to wait 3 weeks for the colonoscopy.  Who would ever be eager to have a colonoscopy???? 

Me.
And NOT ME!!  It's just about the last thing in the world I want to do right now, but I can't stand the not knowing what is going on inside my body.

I'll get through this of course.  I'm just feeling pretty down right now.

Disappointed

I had my appointment with my PS today.  After the last appointment I had to wait to get another fill, so I really expected to get a fill today.  But no.  Although Ive had no redness for atleast a week as soon as I undressed in the plastic surgeons office there was the redness again! What the heck!? So he comes in and looks and pokes and pinches and then tells me we cant expand anymore, the skin under the left breast is just too thin.

he said the upper inside skin of the breast had room so his plan would be to open that up during surgery to accommodate the larger implant (im 200 ccs now and the moderate profile implant for my breast diameter he used the expander for is like 300 ccs. just a reminder here - I was filled to 200ccs at the time of the first surgery. I believe I was at around 300 (planning to go to atleast 500 when I got the infection.) they had removed over 400 ccs of tissue in surgery. now IM only going to get to 300.

He said we could revisit in a month but it's unlikely he'll change his mind. He suggested I could go ahead and schedule my exchange surgery. they offered me the last two Fridays in May any Friday in June or July. so I will have to figure out the best time to do it.

IM really disappointed about the size. but I guess I will just have to get over it. maybe I will like them more when I have the silicone implants?

I know...atleast I've significantly reduced my risk of breast cancer. don't get me wrong, I know how huge that is, it is just sometimes people talk about how getting nicer boobs is a perk of going through all this, but at this point that doesn't seem to be the case for me. butmaybe if I assume I would have gotten cancer, and if I was lucky enough to survive it, I could also assume with all the cancer treatment and every thing my out come would be worse. I guess the thing to keep in mind is the no longer assuming I will get breast cancer.

I'm sure I will come to terms with all this eventually.

Bad days

I've had a rough time coming back to work after this last leave.  I'm soooo tired.  And I'm having difficulty keeping my emotions and stress levels in check.  It seems like the more stressed I am the more tired I am and the more pain I have.  By Thursday each week I want to go to bed at like 730, I can't even stay awake for greys anatomy!  I've turned into a clock watcher waiting for it to be late enough to get the kids in bed so I can go to sleep too.  Today was really horrible, I just can't wait for the weekend.

Giving them a break.

My first week back at work was exhausting.  The work isn't physical, it just can be a lot of stress. 

This was the big Friday we have at work in my department every month and had to leave before it was done for my appointment with the PS.  I was hopeful that we would be far enough along that if my appointment ran long or if I was really sore after the fill I could just go home, luckily my appointment was quick because I still had almost 2 hours of work once I got back. Unfortunately the reason it was quick was because we didn't do a fill (and not a long wait)

He was concerned about some redness I had on each breast. He thought it was most likely just stretching and didn't think it was infection, but he wanted to take a break from fills and reassess in another week and keep close eye on the redness.

So I'm bummed of course, and mildly freaked out about the redness. But maybe it will be good to work next week with out the discomfort of a recent fill. that

Updated Pictures Page

I added pictures after the 2nd fill last Friday.  I've moved the pages from the side bar to tabs above the posts/below the header.  If you're viewing this on mobile format and can't figure out how to view the pictures, just below my header on the top of the page about the blog there is a little bar that says main blog (it should be just above this post) and at the end of the bar is a little drop down arrow that you can select to view the pictures page.

I'm still not thrilled with the size.  I really want to go bigger, but unfortunately I think with 300 cc expanders, at 200 ccs, I'm 2/3 of the way there, and I didn't really notice that big of a difference between 100 and 200, so I think I may just have to to accept that I won't be much bigger than this.  We'll see.  I've read on a message board about someone else who was filled to 350 ccs and then had a 500 cc implant placed at the exchange.  I'll see what my surgeon says about that.

My scars are still not very nice looking.  I'm somewhat bothered by how red my drain scars are considering I didn't even have drains with this last surgery.  But they're all improving.  I'm not too concerned about the breast incision scars at this point since there is still going to be another surgery.

You can't really tell by these pictures either, but the right one is lower than the left.  that and the space between them is what is currently bothering me most about them.  I want them level and closer together!

I need to go buy a supportive bra, but I'm undecided as to whether I should do that now, as I really want to, or wait until the last fill so I ensure the best fit possible for the longest period of time prior to the exchange.  Hmmm...  we'll see I guess.

4 surgeries in less than a year...?

So I'm back to work again. Last week I worked from and today was my first day back in the office.  It really wore me out!  I was actually a little surprised how achey I was at the end of the day, not just my boobs, but my entire body!

I think that having had so many surgeries (4 actual surgeries this year, plus 2 needle biopsies, one of which was to drain fluid from my lung!), with the general anesthesia, and recoveries, and medications, and  everything else that went along with them, on top of the stress I've had this year (though I feel my sister really helped me get a good handle on my stress management) is really starting to take a toll on me.

So for an update - I had another fill on Friday.  I was still worried about infection, but I limited my questions to what I should do if something happens while he's out of town and who would be handling my care.  His answer was that I would still contact his office and we would be able to communicate with him still and if I had to see a surgeon, he has relationships other plastic surgeons in the area that can jump in and see me when he can't.  Unfortunately (for me) my breast surgeon has moved from the area to pursue specialization.

This time the fill hurt some.  I still didn't feel the needle pierce the skin, but i felt some kind of dull pain like in the muscle as the needle went in.  It was fine as he was filling though, so I don't think it has to do with being too full.  50 ccs in each again, which puts us at 200 (equivalent of a 250 implant).  I noticed a difference this time in the size and shape...

Also I had my free microdermabrasion treatment.  OUCH!  It's a metal sander with a vacuum they scrub your face with.  I looked horrible immediately after.  I was all red and my skin was bruised and spotty and I was told I shouldn't wear make up that day - so I went straight home!  By Sunday my skin was much better and today it actually looked pretty good!  I'm happy with the results and considering looking into doing it again for a better improvement of my acne scarring (though I'm really not too excited about going through the procedure again!!)

A reminder..

I'm laying in bed catching up on the FORCE message board, while my husband and daughters watch a movie on the couch - daddy/daughter slumber party (they have the day off tomorrow for presidents day and its my first day back to work - bleh!)

I'm full on crying right now because I came across an updated post that started about a year ago, saying that one of the members needed prayers right now because her 6 year old son had just passed away yesterday from cancer, as if that's not enough I read on from prior posts after they'd first had the diagnosis that she had lost her first child to cancer too. 

Meanwhile I can hear my 5 year old giggling at the movie, and my heart aches.

It's a reminder to me how lucky I am, regardless of what I've gone through with finding out my BRCA status and having this surgery, I am blessed by the health of my family, I am so lucky. 
It's also a reminder that BRCA isn't just about me, and my surgeries - its about the rest of my family too and while I don't do a lot of praying in general, I think I will pray that my family never has to experience something so heartbreaking, and I will pray for her and her family that they have the strength to get through this unfathomable tragedy.

1st fill! (in round 2)

I got my first post surgical fill in these expanders on Friday.

I'm sure the surgeon thought I was totally paranoid about infection, but he assured me it was understandable considering what I've been through. I had lots of questions about the probability of getting an infection from the fills and how long I should keep the band aids on and should I wash the area in any special way, and was he SURE I shouldn't take antibiotics just to be safe??...

There is a risk of infection from the fill since the port is under the nipple, and if you didn't know this - every natural nipple contains staph bacteria.  So everytime they have to inject through the area around the nipple (the areola).. there is a risk of that bacteria getting into the breast and causing an infection. 

He did do a double swipe of the alcohol on each site to try to make me feel a little better.

He still doesn't want to have me take antibiotics because he feels like when I"m already so limited on what I can take, we should reserve those for when we really need them.

I meant to take a picture of these needles.  They're CRAZY.  And it's even crazier that I can't feel it at all!

We injected 50ccs into each side, so with the 100 injected at the time of surgery and the implant counting for about 50, it is equal to a 200cc implant on each side. 

Due to the extra trauma it's been subjected to, the skin on my left breast is MUCH tighter than the right.  Strangely the left one is currently nicer looking than the right.  But so if you can imagine they're both the same size technically, but they look different.  The right one is kind of spreadout and oddly shaped, and due to the tightness of skin the left one is a nice little dome.    I'll get a new picture up soon!

I definitely was set back a little in my level of discomfort.  I was/am more achey and have had trouble sleeping. 

Today I worked from home (I'm working from home this week and going back onsite next week).  I woke up at about 330 and struggled to fall back to sleep until about 5, when I got up, and decided to start working, and then couldn't because I had to wait to receive my new IT access info.  Once I got it I locked myself out of my laptop trying the password (long story...) I was finally able to log in on my desktop computer about 11 am.  and about 1 I was sooo tired, I desparately wanted a nap but then only had half an hour until I needed to get dressed again to pick up my daughter from school for a meeting.  Then I came back and worked while she prepared for the meeting, then the meeting took over 2 hours and I had to stop on my home to drop off my laptop to get unlocked, so I got home shortly before 7  at which point I really needed to take some pain medication and then spent almost 2 hours preparing valentines for my younger daughter to take to school and then got her to bed and THEN realized that I forgot to wash her Valentines day outfit - which is why I am still awake (waiting to put clothes in the dryer)  

I'm working from home again tomorrow, and I need to do my valentines day shopping (on valentines day... urgh) and pick up my laptop... but I hope it will be a little more restful than today!!!

"Autofill"

I had my appointment yesterday, but still no fills!  It seems I was right that I was getting a little bigger, and the surgeon confirmed it.  I have accumated fluid under the skin that has caused the skin to stretch (which makes it shiny).  He says there is nothing that looks infected so we're okay with that fluid being there, and it is kind of to be expected since we didn't do drains.  So since, as he put it, I "autofilled", he didn't want to do an actual fill just yet.  So I have another appointment on Friday... hopefully I'll get a fill then!

Published Pictures Page

So I've put together the pictures to date and posted them on another page, you should find the link to the the "Pictures" page on the right side of the screen.  Please be warned, these are graphic pictures, and if you don't want to see my breasts in various stages of mastectomy and reconstruction - don't look!!  But if you do, go ahead, thats what they're there for.  I've allowed some room at the top with another warning so you can click on the page and then change your mind with out seeing anything.  If you do decide to look, it goes from the bottom up so oldest at the bottom, newest at the top.  Each picture has a caption to explain the picture.  I'm open to feedback here, let me know if you want more information on particular pictures.  Also as I add new pictures I'll mention it in a new post here.

Am I delusional?

So I'm 5 days post op now.  Today is my husbands birthday and my daughters 5th birthday is tomorrow.  I thought I was crazy doing the surgery right before going into this week, but really it has been okay.  I'm really lucky to not have had needed drains.  I think that has made a huge difference in this recovery. 

It has started catching up with me though, yesterday and today I was extremely tired.  I went out and did some shopping with my mom today, to get some last minute stuff for the birthdays, and after just about 2 hours out of the house, I started feeling a little light headed and like I really needed to lay down.  I made it home and rested for a few hours before starting to cook the big dinner.  Then as I was changing into my pajamas I noticed the pec muscles were kind of spasming.  It was rather odd.  So I think I probably over did it today.  Tomorrow I just need to get the cupcakes from the store to my daughters school (with my mom driving and carrying of course *because she's really awesome and helping me out alot through my recoveries*) then I'll dedicate my entire day to resting.

So the title of my post is "Am I delusional?"  Partly because as I mentioned above I have felt so good, relative to how I felt with the previous surgeries, and also because just a couple days ago I was sooo distressed about where my breasts are currently at size wize, but then last night and today I was looking at my new expander breasts and going back and looking at pictures of my natural pre mastectomy breasts and thinking maybe there isn't that much of a difference....?  Sure these ones are hard and somewhat oddly shapped and have long incisions across them and my nipples are definitely disfigured, however I can "see" them being normal again, and really I think if these ones could be squished into a push up bra... maybe they'd be close to same size, they just don't squish, so there is no way to push them up like I could with my old ones... they're just stuck at the projection they're at, which is really not much.

This is good though I think... as long as this isn't some kind of false hope.  I think that when I get the expanders exchanged for silicone implants, aka "squishies", I can get more projection, and may even be able to do push up bras (although ultimately I would really like to appear pushed up without the push up bra...) If I can get even a little bigger than I am now, with more projection AND squishiness... I should be pretty happy!

Today's post-op appointment

Today I had a follow up appointment with the plastic surgeon.  I don't know why I had fooled myself into thinking perhaps I'd get a fill today, but he was just looking at stuff today so I was a little disappointed (ok.. alot disapointed), though I realize after the fact that it had been unrealistic to hope for anything different.

Unfortunately the right one was a little red, which isn't what we would have expected since it's the left one that has been giving us trouble so far.  But he thinks the redness is due to stretching rather than infection, so we'll just keep an eye on it.

He gave me clearance to wear a soft bra for now.  Once the redness goes away we'll look at getting a good underwire bra to work on shaping the pocket.  He commented that at 100 ccs in the implant and 50 ccs for the implant itself, I was at about 150 ccs, and if we had to stop there we could.  I didn't like hearing that, I feel WAY smaller than I want to be.  I would not be pleased to remain at this size!

I think because I was feeling so good (compared to this point after the prior surgeries) and because I don't have drains, I was expecting other things to progress along.  I wanted him to be impressed by how I was doing (and ask what my secret was and I'd tell him about the cinnamon) and he'd decide to do a fill and give me hopes of achieving the breast size I had always wanted!  But none of  those things happened, and after the doctor left the room, I cried. 

It was a little awkward, because the doctors assistant came in to give me my prescription and seemed startled to see me crying, and then she told us we could have a minute, so I tried to get it together, and then we went out in the hall and the esthetician came up and gave me a coffee mug with a certificate for a free facial or microdermebrasion.  Part of me pondered if after the assistant came in and saw me crying she went out in the hall and  got the esthetician and said "quick.. she's crying... give her something!".   hehe.  They were probably planning to give it to me anyway, and it just happened that she caught me crying first.

Anyway, again I need to remind myself - its only 3 days after surgery.  I need to rest and heal and give myself a break.  I need to be more patient.  I don't want to give my new boobs performance anxiety! I just need to let them do their thing....

What? I just had surgery?

I am back home now after my surgery to put tissue expanders back in.  I'm still a little foggy from the anesthesia and have taken my pain meds.  I am currently feeling a tiny bit sore and get this painful zap in my left breast every so often. But otherwise I feel pretty good!  The difference in how I feel now compared with how felt after the 2 prior surgeries is amazing!  I'm a little disappointed in the initial size.  He only put in 100 c's.  He had put in over 200 at the first surgery.  I'm also a little concerned about the potential size... The expanders he used are 300 cc implants and I'm pretty sure last time they were 500. So I guess we will see....
But one piece of exciting good news - NO DRAINS!!!  Woohoo!  He decided it wasn't worth the added risk of infection this time around.  I won't argue with that decision.  It's soooo much better without them. 
Now its time for a nap. 

Getting expanders tomorrow!

Wow!  I can't believe how fast time went by.  I'm not going to get into the thoughts of how horrible I had thought it would be to wait so long and now we're here and that's over.  I'd rather keep in the back of my head the knowledge that something still could go wrong and I could end up back where I was 3 months ago (learning is be boobless for sometime).  Of course I will be hoping for the best and thinking positive thoughts... I just don't want to be caught off guard again if things don't go as planned.

So I've showered with the hibiclense prepared ny clothes for tomorrow, ate a big dinner (since I won't eat again until late tomorrow), painted my finger and toe nails sparkly pink, and set my alarm for 5 til 7 so I can take a few drinks if water before its forbidden... Then tomorrow I will get up, drink some water, get the kids going, shower with hibiclense again, get dressed.. I will probably blowdry and straighten my hair.. then we will drop off the youngest at daycare on our way in.  My mom will be meeting us there.

Im super excited about getting the expanders put in, but I'm definetly nervous too... 

Better get to sleep.. got a big day tomorrow!

Not feeling ready!!

Ok so 4 full days.. 4 1/2 really, until the surgery to get my expanders put back.  I was sooo excited to get to do this earlier than originally planned, but I feel now like I'm not nearly prepared enough!

Stuff keeps coming up at work preventing me from getting things *ahead* for when I'm gone.  I know its half the time and they won't need to complete a full cycle, but I feel like I should leave them in the best position possible to manage things while I'm gone and I don't feel like I'm there yet.

Then my daughters 5th birthday (as well as my husbands birthday) is less than a week after surgery.  There is still shopping and party planning, not to mention wrapping presents and getting goody bags together and then hosting her party!  Oy what was I thinking??

There is just random other stuff too, I still need to fill prescriptions, do a bunch of laundry and organize it for what I will need handy, clean all my bedding, find my pill organizer, determine the most reliable thermometer, deep clean my bathroom.  Figure out how to get my older daughter to her appointment Thursday since I can't justify leaving work early when its the last day before I'm gone for 3 weeks. I think I'm starting to freak out.

What is Under My Shirt?

So I've had some comments from people along the lines of "If you hadn't told me you were doing this, I wouldn't even be able to tell anything had changed!"

Well thats nice of them.  I know there is a fairly substantial size difference between what I had going on before and the forms I'm using now, but maybe that goes to show that people just don't pay *that* much attention to my boobs!

Anyway, so while I am planning on sharing "pictures" sometime soon.. I'm still not there, but I will share a non body picture of what is making me appear normal from the outside.

So this is what is under my shirt:

I wear this bra (or one like it) with the "forms" inside the cups over a thin sports bra and under a camisole.

I don't like to wear the forms directly on my skin (so the bra underneath) and If I don't wear a camisole over this bra the shape isn't quite right, not to mention without the camisole it would be obvious I didn't have boobs if you snuck a peak down my shirt.

But this setup beats nothing, and far exceeds the weird nursing pad, surgical gauze combo I had going initially after surgery.

10 more days!!!

100 Days Since Mastectomy!

WOW!  ... Hmmm. It's not like I'm going to throw a party or reminisce over the good times.  But 100 days seems pretty substantial.  Its been 100 days since my boobs were removed and with them a huge weight on my shoulders (both figuritively and literally, HA!).  100 days I've spent relatively little time consumed with thoughts about cancer.  100 days I've looked in the mirror and seen something that is not familiar to me.  100 days of varied levels of discomfort. 

Well.  It doesn't end here.  I just hope the next 100 days are better than the first, and continue to reaffirm what the goal was.  100 days ago I removed my boobs and put up the "No Cancer Allowed" sign.

Maybe when it's been a year I'll feel like throwing a party.  Or better yet 10 years!  THAT will be the real milestone.

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!!

New Year

It's 2012.  Tonight I pondered a bit over how each year we get all nostalgic thinking of years past and have all these high hopes for the next year to come.  It's motivating I suppose to consider it like a fresh start, like, " ... last year and all that crap?  It's done.  Now it's the NEW year!  Anything can happen!! It will be Great!"  Though in my experience the next new year will come and I'll realize the last year was very much like the year before, just a few different circumstances.  But I really want to give it a try this year.  Especially because I'm also about to turn 30.  So this year can bring not only a year, but a new decade of my life. I'm ready to start a new chapter!  So here is my resolutions list...

Be a more patient mother.  After watching 19 Kids and Counting, about the family with 19 + children on the episode where they answered viewer questions, the mom answered the question about patience by saying basically it's just a decision she always has to make, she chooses to consider how what she is going to say or do will affect her children's feelings and their relationship..  Somehow that leads her to be what I have often viewed as unrealistically patient and gentle.  I've never seen her yell or be visibly angry or even frustrated.  And I always thought that would be an impossible thing for me, that I'm just not that person (not that I yell all the time... but I sure would like to do it less...or not at all)  but then she made the comment about it being a choice and so I think I want to give it a try.  I want to try to CHOOSE to be patient and kind.  I failed today when I was cooking my dinner and had hot food on the stove and a roast in the oven and the microwave going and one kid who had said she had no homework for the whole school break and then found something she needed to do the day before going back and then zoned out for the entire day while she was "working on it" when it should have only taken 30 minutes and then a dog in the kitchen and the 4 year old wanting MORE snacks..MORE chocolate... AAAAAAH!!!!  but I'll start again tomorrow and give it a shot.   It's just 2 kids... not 19!

Be Happier. Just like the last one, I assume much of this is a choice and takes practice. I want to view the glass half full. I just need to choose to do so sometimes. I want to make that choice more often. I'll apply that to work and home and body. I want to enjoy my life, and sometimes I think you have to push the negative aside and just focus on the positive. I need to do that. If I succeed this should help with my relationships with my children and husband.

Drink More Water!!!  This has been on my list for the last few years.  People are supposed to drink like 8 glasses of water a day?  I sometimes (frequently) drink none.  NO water whatsoever.  I do drink liquid.. in the form of the juice or soda or tea or alcoholic beverages...but no water.  So I will try again, as simple as "drink water daily".  Once I can manage that, I will work on quantities.

Become Healthier.  I think that some of this will come naturally if I follow through on my other resolutions.  If I'm more patient I will likely feel less stress.  Positive thinking should improve my health.  Water should make a difference too.  So this also will include my choices about exercise and what I eat and drink.  Hopefully by more carefully managing the balance in these areas I will be able to get my autoimmune issues under control and just generally feel better which should also help with the happier resolution!

Get boobs.  I want boobs!  I will go to my appointment this week to arrange a time to get them, and then I will do everything in my power to get through the next two surgeries and recover without any more infections!   Working on all my other resolutions should help with this one too!  

I'd like 2 breasts please.

When I make *quick* BBQ chicken pizza, I use frozen cheese pizza, salsa, bbq sauce and fried chicken from the grocery store deli.  So tonight I went up to the deli and when asked if I needed something, I said "yes, I would like 2 breasts and a thigh please" and as she was getting the chicken I realized what I said and started giggling.  My daughter asked me what was funny so I told her, "I just asked her for 2 breasts" and we both started giggling.  I'm sure the gal in the deli thought we were really weird!

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.

I thought about wearing mascara

It's been a long time since I have worn mascara.  By long time I mean atleast a couple months.  I may have risked it at some point in September prior to surgery. I tend to not wear it if I feel like I am likely to cry that day. But as I was getting ready this morning I thought about wearing mascara today. I thought it would look nice and I have been fairly stable recently. I didn't see it out above the counter though, and I didn't feel like digging around for it, so I skipped it. Good thing I did!

About 30 minutes later, on my way in to work, a song on the radio that got me feeling a little sentimental and I started thinking about my daughters and how they would feel about what I've done. I'm hoping by doing this I've saved them from losing a family member so young, but then they won't be forced to face the harsh reality of how deadly this really is. And with that being the case, will they understand? If I'm boobless for the rest of my life will they think I just made a dumb mistake? Will they think I'm a coward? Or just overreacting? Then I wonder if I'm really worried about them thinking that, or if that is what I might be thinking, And then I pictured myself really sick and then dead and realize again that I've done the right thing, and even if they think I'm really pathetic, its better than not being around to see them as adults - that's the whole point right? I just want them to someday think I was brave and know that I did this for them (in a non guilty way) and hopefully they'll grasp the severity of the situation should one of them be faced with making the same choices, and thankfully I should be around to provide support to them.

Luckily I had a tissue within reach or my makeup would have been a complete loss for the day (and today was a looong day). So clearly I'm not ready to wear mascara yet.

Back to Work

I have survived my first week back at work.  I have to say it is a little awkward when people ask "so is it good to be back at work?"  Um.... "sure?"   Really I love my job, and I love the people I work with, and I did miss the social aspect of working, but honestly I really enjoy opportunities to not work.  I like visiting with my parents in the morning and taking afternoon naps and being home for dinner with my husband and daughters every night.

But since I did have to go back to work, I was happy to go back to my job. 




The Opening to my Office Space



My boss decorated my office area with all of our "Back to School" themed stuff.  Which is so extremely sweet considering how against our decorating he is, and he came in on the weekend to do it!  So I had curtains and apples everywhere and there were mini chalk boards hung on the wall saying  "we are glad you are back" and there were all the fake sunflowers everywhere, but there were also real flowers for me, sunflowers and roses and a welcome back card. 

The other person on my staff (who I would consider a great friend - but I can't hang out with her outside of work because of work rules) baked pumpkin chocolate chip cookies for me (for us?.. at my request..) - YUM.  They're my favorite and the only thing I felt like eating that whole time I was sick.  She stole my stapler and left a note saying that I would get my stapler back eventually but for now I can get assistance with stapling and hole punching from others (because she was told by someone that those actions would be painful for me).  

Almost everyone seemed genuinely happy to see me and had nothing but good things to say about how my department ran in my absence (which some people may be insecure about, but I know it doesn't just reflect well on my staff (who really rocks), but on my management/training abilities as well).  It was so nice to not have to worry about anything while I was gone, and it was also very helpful to me to not come back to a mess!

So coming back to work was good, and It helped that my nausea had subsided a few days prior, but I'm definitely tired (I've wanted to go to bed for about an hour now, but it's just not right to go to sleep at 7 pm on a Friday) and I'm pretty achy.  I'm still taking pain meds though I've drastically reduced the amount, but it doesn't really take care of the arm/hand pain, and I end up pretty sore all over my upper body by the end of the day.  It's particularly bad If I get too far off schedule with the pain meds, its then hard to get to to feeling comfortable.  And I did try to staple something and it sent a quick ripple of pain through my chest, so I'm not going to try hole punching, and I'll go ahead and allow others to do those things for me for the time being.

Its been a challenge to get up and get dressed every morning.  I've been doing it for awhile, but now I have to really consider how professional I look, and how comfortable I'll be for the next 8 to 12 hours.   I have to layer my clothing differently, because before I didn't care if I occasionally showed a *little* cleavage, but now that there are NO boobs, and I'm stuffing a bra, over a soft tank top (with nursing pads to prevent rubbing)I have to really be sure that none of that will be given away regardless of what position I'm in (such as leaning over a desk to look at something with someone - which actually happens numerous times a day) PLUS just getting out of bed and trying to get a 4 year old ready and out the door and not get frustrated about whether I'll be getting to work "on time".  Oy. 

I also had 2 appointments this week.  One was with my Rheumatologist, and the other was with the Plastic Surgeon. 

The rheumatologist was interested in hearing all about the surgery and complications, and he was very sympathetic and then said that while this is all very hard and unpleasant, its good that I'm not having to deal with this along with a cancer diagnosis - and that reminded me that yes.. I still think I made the right decision. (and it felt good that he really gets it).  He said he is fine with me staying off the plaquinil (the anti-malarial drug for my autoimmune disorder) as long as I'm managing okay.  He says that it does not increase chances of infection, but he understands the surgeon's desire to eliminate variables.  His concern is that if I have a recurrence of the pleurisy or pleural effusion, we would then have to treat with prednisone which IS known to increase risk of infection and hinder wound healing.  I discussed this with the plastic surgeon and he said that if plaquinil is something I can easily go on and off on, he'd suggest I go back on it now and come back off a month before surgery, so I'll take that idea back to the rheumatologist and see what he thinks.

At the Plastic Surgeon appointment today, he said things look really good.  And gave the run down on time frame again for the reconstruction.. I need to wait until at least mid February for the expander placement, then it will be 5 months (or more) until we replace the expanders with silicone implants.  So my next appointment with his is in a little over 6 weeks, and at that time he would like me to have some ideas on my schedule and when I might like to do it so we can start scheduling and planning.  They then removed the little poky stitches that were sticking out the corners of my incision, and determined the weird lumpy thing under my skin on my right chest area (cant really call it a boob...) is a suture that has come loose, and it should go away.  We also talked more about my hands and arms.  He is a little surprised that I'm still having issues, but acknowledges that it is possible and perhaps I'm a person more prone to nerve issues.  He thinks it is a possibility too that this has triggered carpal tunnel... so if I don't continue to see improvement or if I determine that its not something I can tolerate, he can refer me to a nerve specialist.  But for now, I feel like its getting at least a little better all the time (just slowly....) so I'll wait and see.

NOW it's time to go to bed.  *Hopefully* I'll get to sleep in a little!

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.

Drain Free...Again!

My drains were removed at my appointment today.  Yay!!!

I told the nurse I really wanted them out and she obviously said something to the surgeon because he came in and said "so I hear there will be a rebellion if we don't take these drain out?"  I said "maybe..." so he said we might compromise and checked things out, and thought it looked good so he gave the ok to the nurse to take them out. 

On the down side (and this must be the compromise he mentioned) I have to wear my tightest breast binder (and make it tighter if possible) for another week.  This is to make sure the breast skin firmly "sticks" to the chest wall which will somehow make things better when we go in to replace the expanders, its also important to not have "pockets" because pockets have greater potential to stow away bacteria, which could hang out there until the expander goes in and then cause another infection!  I will do my best to follow his advise.. I did before too, but I am watching like a hawk!  I pointed out a tiny red spot ony incision I've been watching and he said it was fine it's just a little irritated by the stitch that is there.  He said if I have any fluid build up to call and they'll get me in right away and its really easy to just use a needle and draw it out.  Otherwise, I will see him again Friday.  This is 1 week since my surgery to remove my expanders and 4 weeks tomorrow since my mastectomy, this will be the longest I've gone between appointments.   Having the drains out makes me a little nervous, but I'm on major antibiotics and I don't have any foreign body in me we need to hang on to, but man, I just imagine I will be super nervous when I have expanders again.

Anyway.. I should be drain free for a couple months now.   And I am happy to say that removing them this time was no where near as unpleasant as I anticipated it being.  I hardly felt it.  Unfortunately it didn't improve my arm/underarm discomfort as much as I thought it would, but it did help a little.  I guess these are going to be things that take time to resolve.  Once everything is done I will request a referral for physical therapy if It's not fully back to normal by then.

I took a nap on the couch today and got up without much difficulty.  I think tomorrow I will return to sleeping in bed, probably until the next surgery.

Happy Halloween!

Trying Really Hard

I am really working on trying to get a grip.  It feels like a nightmare.  I just have to accept that I'm already awake and figure out how to move forward. 

I really think when I get these horrible drains out I will feel a lot better.  I will be able to wear regular clothing, without looking like I'm smuggling something.  Ha! I worry when I go into a store that someone will see my lumpy sweatshirt and think I am trying to steal something.  Wouldn't they be surprised if I showed them!

Once I can wear regular clothes and don't have the drains I hope to go to a local mastectomy apparel store.

Apparently I have to wait like 2 months to get prosthetic breasts, and it seems it is quite the process.  I have to get a prescription from my doctor and then go in for a special fitting appointment.  Both the place that does these and my doctor say I have to be very well healed (about 2 months) before doing this, and by then I really had hoped we would be very soon having the expanders replaced... so I guess we will see.

But anyway, I was somewhat disheartened by this news I would have to wait 2 months when I'm going back to work in 2 weeks!  Right now I'm stuffing a tank top over my breast binder with a combination of surgical dressing and nursing pads which is semi adequate for the casual outing to a store or sitting around in a sweatshirt.. but certainly won't do for professional dress (or anything other than a sweatshirt really).

My understanding is the store I want to go to has post surgical bras and camisoles, that have lightweight "forms" and are suitable to wear while healing.  Hopefully having something like that to wear will help me feel a little better. 

I think one day when this is behind me, I will do some breast binder burning.

While I look forward to the drains being out, I really dread them actually coming out.  I know from last time that it hurts, and with these ones being bigger and seemingly more encased by my skin, and up in my armpits..(ugh...gives me the heebiejeebies - side note - I've never used that phrase before), I just imagine this will be much worse than last time!!  Can't they give me nitrous or something, like at the dentist??  I wonder if they've ever thought of that. 

Anyway, I think I'm doing better each day, very small increments, and I have to remind myself once in while that I did just have my second surgery in a month less than a week ago...it is okay to be tired.  I've had a major physical change and its okay to be unhappy about it.  I'm really hoping that soon I will be able to look at this as just a setback.

Bigger Tubes and NO Boobs

So I lost my expanders.  I now have no boobs whatsoever.  I just have wrinkled skin and nipples with an incision pressed flat/slightly concave against my chest wall on each side of my chest, covered by my hospital issued breast binder I have to wear 24/7.  To add salt to my wounds I also have drain tubes again. They're bigger this time believe it or not - even more uncomfortable.  The right one goes into my side and then up into my arm pit before looping down to go around my former breast area. Where it sits in my arm pit it pushes against some nerves or muscles in such a way that it causes this dull numbing ache through my whole shoulder, arm and the section of my back there.   The only relief I have from it I find once I lay down and wiggle and adjust pillows and then viola it is gone, until I have to get up again.  This was my better arm after the first surgery.. now I have less mobility in it than the other.  I am fairly numb about my appearance when I look at my naked chest.  I try not to look at it.  I don't have to as much as I did with the expanders so just don't.  Huh, I just realized that I might feel so dehydrated because I'm crying so much.  I'm getting better about holding it in around people.  But I don't know why I didn't prepare myself better for this possibility.  I was so sure reconstruction was going to go smoothly.  The is far more than a bump in the road.  This is like I got car jacked at gun point and I'm left beaten at the side of the road 100 miles off course and forced to hitch hike back to the starting line, knowing well I wont even have a shot now at second prize.

Great I'm thankful that the infection isn't going to kill me, and yay I can get my expanders back in a few months and start again.  But I'm here now with no boobs and it is really not pretty!  And I have these dumb drains that are far more than a small annoyance dangling around my waist creating bulk under my clothes that seems to accentuate that lack of of bulk above them.  I have very little appetite and when I do eat I don't know if its a side effect of the antibiotic but food suddenly tastes weird... both the tacos last night and spaghetti tonight were unbearably salty (though they were prepared the same as always) the bread for my peanut butter toast tasted bitter.  I'm not even enjoying my mini reeces peanut butter cups. 

I am sooooo tired of being in my house, but even though I'm sure my mom would be willing to take me somewhere, I don't know what I would want to do.. I don't want to be seen like this.  There's only 2 weeks left until I am supposed to go back to work, and I just don't know if I will be ready. 

Ok... I feel a little better, getting it out is helpful.  I still know my reason I did this, but it doesn't mean this doesn't hurt me now.

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.

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.

Drain Free and Filled!

Today is one day after the two week mark.  I got the drains removed today.  It was rather unpleasant.  I think I described previously how these drains were wrapped around the outer edges of my breast under the skin... well as they were pulled out I could feel it moving through that space, and I think my tissues had probably started trying to attach to it, which is probably what caused pain as it was torn away (thats just my theory). 

Prior to that though I got my first fill.  I was a little nervous about that because it seems like my breasts were still sensitive.  I explained to my plastic surgeon that it seemed like I still had painful sensation and that my incisions sometimes had twinges of pain.  And he said that its just the nerves trying to make sense of what we've done to them, but that in reality I shouldn't have any actual feeling.  He had me lay back and suggested that I close my eyes (unless I really wanted to see him come at me with the big needle).  So I closed my eyes and he said, okay here we go, and I braced myself, and... I felt nothing.  He proceeded to inject my breast (the expander implant) with 50ccs of fluid. and then went on to the next.  Same thing.

It was kind of funny to look down and see bigger boobs!  My husband who was in the room was equally amused.  He called them bionic boobies.

The plastic surgeon is comfortable with where my nipples are at in healing, so now that my drains are out he wants me to compress the boobs with either a tight sports bra or my breast binder from the hospital.  Right now I have both, since I'm not sure that either of them are adequately tight (or comfortable) on their own.  We also went to the store and bought a couple bras that I hope will be more comfortable than what I have currently.

I found what he said about wearing a bra interesting.. I asked if I still needed to wear one and he said that yes, considering that what I had before was the equivenlent of 500ccs and what I have now is essentially 300ccs - I have boobs, and they need support.   ok.   I'm learning that I actually had um... not small.. breasts naturally.  I've always been a bra wearer anyway, so no big deal.  I was just a little curious about this world of non bra wearing I read about on the message boards with women who for some reason aren't required to wear them.

I also mentioned early in the blog that he had said I might not even be able to get them the size they were when I had actually wanted them a bit bigger.  Now it seems that as long as we go slow, we'll see how it goes and might be able to get there (or even a bit bigger!)  YAY!

Anyway.. I am worn out today.  Off to bed I go!

Relief

I was really worried before the surgery that I would wake up from the surgery and feel deformed and devastated by my "loss". 

I'll admit when I was in the hospital before my plastic surgeon came in, I was afraid to look at my chest.  I didn't want to face what I had done quite yet.  I didn't get a real good look until the plastic surgeon came in and opened it all up and my sister in law snapped some pictures.  It was kind of strange...  I wouldn't say I felt nothing... but pretty close to nothing.  Most of my thought at that moment was about how my sister inlaw probably didn't expect them to look that bad.

I cried once in the hospital.  (well twice, but I'm not counting when I woke up in pain in recovery, I'm talking about afterwards..)  I was just overwhelmed.  It wasn't really even about my boobs.  I was really scared about my arms, I was so afraid that I would be permanently disabled.

But now that my arms are back to almost normal (still lack some feeling in my left arm and some of my finger tips), I really have no regrets.  My right nipple was trying to die off - it turned black and flattened out and was really weird looking, and I was not to happy about that, but I figured I had a back up plan.  If one died, I could just get the other removed and get reconstructed nipples that matched.. lots of women who have mastectomies do that. 

I have to really look at them at least twice a day.  I have to clean the incisions and put burn cream on them, and cover them with bandages.  I do so carefully, like I'm nurturing them somehow.  I am sometimes weirded out by my lack of emotion about it all.  Should I be disturbed by how unpleasant they look?  Should I be crying all the time?  Should I feel a great loss over the beautiful breasts I once had?  I don't know...  Maybe it's because I had so long to plan this and prepare and felt all these emotions before hand?  Maybe I'm still numb... maybe the anesthesia hasn't worn off the emotionall part of my brain.  Maybe once my tummy functions get back on track so will my emotions?? 

As I keep saying - it is what it is.  There is a reason I did this and I still believe in it.  For now I just feel relief that the waiting is over, and relief that I don't feel any of those feelings I dreaded prior to surgery.