Wow! Has it been that long? And another surgery....

Wow! It's been awhile since I've posted!  That's a good thing I think..  My second anniversary came and went.  Here I am almost 4 years from when I found out my BRCA status.  Now I'm past the mastectomy and reconstruction, and on to the ovaries.

I wish I could say that the mastectomy made it so I didn't have to worry about cancer anymore, but it didn't... I still worry.  I worry far less about breast cancer than I did prior to the PBM, but I won't lie... it still consumes me on occasion.  I guess the big point is that it doesn't consume me ALL THE TIME.   It has recently come to my attention that no one (besides me and my husband) has looked at my boobs since my follow up with the plastic surgeon after the exchange!  So last week I called the high risk clinic to ask the patient coordinator who I should see, because obviously I still need some form of screening!  My risk isn't eliminated!

We also decided recently that it is time to get these ovaries out.  Part of it is because of pregnancy fears.  I feel like I am surrounded by pregnancy at work.  Someone is ALWAYS pregnant.  Then we have friends and/or family get pregnant, and it's such a  happy thing for them, but I know that I don't want anymore children, and every month I just hope that my birth control hasn't failed.  Between stressing about getting pregnant, and then worrying every time I feel anything remotely like an ovarian cancer symptom, I'm just soooo ready.  It was really about waiting for my husband to be more comfortable with it, and now he is, so I set a date!  March 14th.

Side note - while I would happy to win the lottery ANYTIME....  In the next 6 weeks would be great.  That might be the only chance of me wanting to have another child.  Just putting it out there...

This one is a little easier for me I think than losing the boobs.  For one thing... the ovaries are a constant source of dread, for both cancer and unwanted pregnancy, not to mention the reason I have periods and cramps and bloating and mood swings.  Boobs were scary once I considered my family history and BRCA status, but they were otherwise harmless, AND a part of my body image and sexuality.  I have no attachment to my ovaries.

Whats "funny" to me is that I make this decision and I call and leave a message for the gynecologic oncologist and then a day later I get a call back from her nurse and she asks what I need... I say I'm ready to have my ovaries out and within 3 minutes she has a surgery date scheduled for me.  They're not messing around!  There is no "are you SURE?... maybe you should talk to the doctor first..."  Just "okay let's schedule the robot just in case you want to do  it that way, you can make your decision on what kind of surgery at preop".  OK...?

I guess that goes to show the legitimacy of my decision.

So maybe now that I have surgery looming I'll post a little more, but in case I don't here's an update on the boobs:

I still think this was absolutely the right thing for me to do AND the right time for me to do it.  Having just turned 32 I think about having to face cancer now, and the possibility (likelihood?) that I might not make it through it... and I am sooooo thankful to have had the opportunity to prevent it.  But I do miss my boobs.  I am fairly self conscious about the new ones.

Here's another TMI warning! - I am 99% sure that although my husband tells me they don't do anything weird during our intimacy, they wrinkle every time I lean forward.  I've tried to do it in the mirror, and it takes a lot of effort to keep the muscles relaxed enough to not wrinkle the boobs. and I'm pretty sure I'm not putting that much effort into relaxing in the heat of the moment.

Even when I have clothes on, they occasionally make me self conscious.  I can't wear normal bras because theyre meant to contain fatty breasts.  Mine are hard and always in one position, so I have to wear cloth/stretchy sports bra material type bras.  Maybe I haven't searched enough for silky lacy ones... I'll make it a mission in the next couple weeks (as I am desperately needing new bras)

The nipples (one more so than the other) ALWAYS stick out, so even with my sports bra on, the nipple still shows if I wear anything form fitting that isn't a super heavy material.  So I have a couple of those swim suit top inserts that I'll stick in my bra.  Also when I go to lift things or try to lift myself to sit on a counter, or anything at all that involves a "lifting" motion also lifts my boobs ( the wrinkle previously mentioned).

So it is what it is and I'm infinitely grateful to not have cancer, but it also sucks sometimes to have fake boobs (and not the nice fatty augmented kind)

I'll try to get some new pictures up and maybe I'll even do a wrinkle/flex boob picture so you can see what I'm talking about.  I'm a little worried now that we've upgraded our operating system I'm no longer seeing my pictures on the blog.  I hope that's not the case for everyone looking at it!

Happy Anniversary!

Thursday, October 4th, was my 1 year anniversery of my mastectomy.  It's been a crazy year!  Wow.  It seems like it was a long year, yet it also seems like just yesterday.   Weird how time works that way.

One thing I can tell you that will hopefully ease fears of anyone who is currently experiencing pain, or afraid of whats to come.  At some points I was afraid I would always feel that pain, or I'd look back and remember nothing but the pain.  But at this point, I know I felt pain, and it was really bad, and I remember that it really hurt, but for the most part I've forgotten what it really felt like.  It's faded. So Number 1 - the pain is gone.  Number 2 - its not seared into my brain.  The real point here is that even though I have these scars, I have lowered my risk

I still think about my boobs everyday.  Its only been a little over 3 months since finishing my reconstruction, so I think thats probably not abnormal.  Maybe I'll think about them everyday for the rest of my life?  Maybe I thought about them everyday before I had the surgery?  I don't even remember what it was like to not be obsessed with my boobs.

I'm currently on a diet, and trying lose some of the weight I put on in hopes of being able to do fat grafting, and I'm excited that my boobs will look bigger when the rest of me is smaller.  Its going pretty well!  I've lost about 12 pounds so far.  I think between the healthy eating, and the increased exercise, my body is feeling really energized, and I feel good!   Its been a long time since I felt this good.

This is also a big time of transition for me.  In addition to Thursday being my 1 year mastectomy anniversary, it was also my last day at my job.  I'm starting a new job on Monday.  (this is by choice)Its a whole new industry and its kind of scary!  I've worked in private, for profit, higher education for almost 7 years of my 8 years of professional experience, and now I'm transitioning into healthcare!   I'm moving from a campus executive management role to a non-management entry level position.  But there is lots of opportunity for growth, and I'm pretty excited about the challenge of learning a new field.

So anyway.  Thats where I am,  1 YEAR after my prophylactic bilateral mastectomy.

Back to screening...

I had two appointments this week.  One for my tests for ovarian cancer screening, and one with my plastic surgeon, 7 weeks post exchange.

The screening was pretty much like last time.  Except I had a student take my blood, and she did fine.  I'm pretty easy though.  Then on to the transvaginal ultrasound.  I could think of thousands of things i'd rather do with my morning.  Geez. I couldn't stop thinking about how I'm supposed to do this every 6 months, so even if I do get my ovaries out as soon as I turn 35, I still have to do this 8 more times!!    

The technician wouldn't show me pictures of them this time.  I know its not as exciting as seeing a baby in the tummy, but still.... I'd like to see them!  She just said she didn't see anything highly unusual, but she couldn't really tell me anything more than that.

I did find out that the radiologist doesn't just look at the present images, they actually compare the previous ones to look for suspicious changes.

I will have an appointment next week with the gynocologic oncologist to get a pelvic exam and review the tests.  I'm also going to ask her about what I've read  about the possibility of mastectomy affecting hormones.

So with my appointment with the plastic surgeon, we took more pictures, and he talked about the possibility of revision in the future. Like fat grafting. Though apparently what fat I have is not up to pr for grafting.  He pinched me around the belly and hips and said I don't really have much and what I have isn't the right kind... too stringy.  So there is no point in hanging on to this fat I have in hopes of transferring to my breasts.  He said I'd have to wait atleast 6 months to a year, to look at making any changes, unless something goes  wrong, and in fact , I don't need o see him again for 6 months!

I guess this is a good time for an update on how I am doing.. pretty good!  I will post more pictures soon.  there are areas I am not pleased with. But in general they're pretty good considering what they've beenn through.  I only have occasional twinges of pain, and the muscles do very odd things when I move certain ways.  One odd thing too is when Im in the shower and the water hits my right breast directly, the muscle like retracts and I get this weird dent, and it hurts!  I told the surgeon this, and he blamed my funky nerves.   He'd never heard anything like that but was sure it wasn't something to be concerned about.

So thats that.   Just back on the surveillance bus.  Feeling pretty good, hopefully I can just live a normal healthy life for awhile.

Feeling amazing in my clothes

I just realized how amazing I'm feeling in my clothing.  Ever since my mastectomy in October I've been wearing multiple layers on my upper body.  After the mastectomy it was bandages and binders and tank tops covered by zip up sweatshirts, then when I was boobless it was really the peak of layers since I had to have something soft between my skin and the fake boobs (usually a thin tanktop or bra)then a bra to hold the fake boobs then a camisole to make the shape look more normal and hide them then a shirt or blouse over the camisole then usually some form of sweater to further disguise the odd shape.  Then once I got the expanders the layers were pretty much the same except the fake boobs and the extra bra.  But I still did bra, camisole, shirt, and sweater. 

Thank goodness that was through the winter!!!   Now that its summer I can't imagine having all those layers.  I don't know what it was with my nipples with the expanders but they pretty much constantly stuck out and were weird looking.  After the exchange surgery, my soft sports bra actually flattens them out just fine.  So today I am wearing a soft sports bra and a loose sleeveless top, and it just feels amazing.  The gap between my breasts is far more natural looking than it was with the expanders.  Same with their shape in general, so I'm not too concerned with hiding them. 

Now the only thing making me uncomfortable is the 30 lbs I've gained over the last 2 years... I'm more concerned with hiding my belly than my boobs.  I've also gained bulk in my upper arms, so now that it is tank top season, that is going to take some getting used to.  I'm definitely going to start exercising soon. 

Anyway, I just wanted to share... I feel liberated from my bulky clothes and layer upon layer of fabric used to conceal my upper body.  It feels great.  I've even started to consider the possibility of going braless since my new boobs hold themselves up.  I'm going to wait though until I feel like they've settled.  I still kind of feel like I need the bra to keep the implants from drifting.  But once thats past - watch out!  It will be a whole new world of strapless and backless tops that I never considered wearing before!  Hey, there might as well be some "perks" to all this right?

Appointment update

I went with my mom this morning to get a pedicure at the cosmetology school my sister in law attends. It was nice, I always enjoy the massage and now my nails which I usually keep some shade of pink are now sparkly red (for July 4th).

Later I had another follow up with my plastic surgeon. He checked the boobs out and said they looked good. He doesn't think I need to strap them down at this point. He thinks the outer edge of the pocket is formed well enough that they won't drift too far to the sides. This is good news.

I'm going to admit to something a little embarrassing here. It was probably Wednesday night. Monday night after I had the bandages removed and the bandeau off I slept with just a soft bra on. When I woke up I thought my boobs had moved apart from one another, so Tuesday night I slept with the bandeau on and I felt better about them in the morning, so I did it again Wednesday night, but then I woke up in the middle of the night with some arm numbness and boob pain, and had this intense fear that I had the bandeau too tight and cut off the blood supply and spent a couple sleepless hours afraid that the skin was going to die and I'd lose my ability to be reconstructed. Ugh. So that didn't happen thankfully, I'm sure I was thinking less than rationally, however I've kept the bandeau off and they seem to be okay.  And I was reassured when the plastic surgeon said they still looked good. He says there is some fluid in there and that's okay, we just need to stay vigilent in watching for infection.

I also told him about the numbness I have been experiencing.. basically my arms fall asleep easily, numerous times a day and at night when I'm sleeping. His thought is that the surgery may have disrupted something and or the swelling is causing it. I think the swelling is a likely explanation because the numbness seems to start on the lower portion on my armpit and spread from there and I definitely have a fair amount of swelling there. So I'm still happy with them.

Tomorrow I am going to the local FORCE group meeting. I'm excited to see everyone again and maybe meet some new people! attends

Post Exchange Pictures added and post op update.

I've posted new pictures on the pictures page, I added pictures from just before the surgery and from yesterday after I got the bandages removed.

I have to say I am pretty happy with the results so far.  They are closer together, though I worry about whether they'll drift apart If I don't keep them strapped.  He said I didn't need to wear anything special, just a comfy soft bra, but after just one night of that I felt like they were drifting to the sides.  So we'll see....

I also didn't know until the bandages came off that he didn't reopen the entire scar!  He only needed to open the area of the scar that goes under the nipple and out to the side, so the portion of the scars on each side that go in to the center of my chest remained closed and so are still fairly nicely healed.  You'll see in the picture they're hardly noticiable (atleast compared to all the other gore going on there).

He said the bruising and discoloration is normal (especially considering my haircolor - and he called me a red head, I'm not sure if thats some kind of joke or not, but I didn't take it as one), and the swelling is normal as well.  He seemed a little concerned about some of the redness, but then we discussed that I did get a little red with just the stretching, so he figures the redness is from the swelling and putting in a bigger implant, and he's not thinking anything looks infected, so I'm to watch them like a hawk to keep an eye out for infection and I'm on antibiotics this time, so we're being extra safe.  But so far it all looks good.

The other thing I didn't know, was that we didn't end up with any of the implants I thought we were talking about.  I thought we were going to go with smooth implants, but when I got my info cards on them it turns out they are textured.

From http://www.justbreastimplants.com/breast_implants/natrelle120.htm

Allergan Natrelle™ Biocell® Style 120
Textured Round High Profile Silicone Gel Breast Implant

The BIOCELL® Round Silicone Matrix enables you to select an implant that uniquely meets the requirements of your preoperative plan with our patented BIOCELL® surface texture designed to provide mild tissue adherence and reduce the risk of capsular contracture.

I got the 400cc implants, with a diameter of 12.1 and projection of 4.5.  So not what I expected, and not sure where they even came from, but I'm happy with them!  Ha I just had a thought - I hope they were actually for ME, that would be uncool if I stole the implants from the next patient.  LOL.  I'm sure thats not the case!

So now I'm able to to shower which is nice.  Yesterday before my appointment I got a haircut with a very nice hairwash.  It's a pretty drastic cut too for those of you who know me - its ALOT shorter (ATLEAST 6 inches fell on the floor).  It's shorter than I really wanted, but I like it.  I think it will be easier for me to pull off a highly professional look.  I think it looks more mature (my moms word - I said "older").

I'm staying on top of the pain meds, so i'm staying pretty comfortable though I'm having issues with feeling too hot and getting itchy (mostly on my back where I can't reach).  

I'm going in to the PS on friday so he can check that all is good before we go into the weekend, then I'll probably see him again the following Friday to remove the tape.  So now I'm just resting, watching daytime tv, trying to not eat too many oreos. 

Exchange surgery complete!

I had my exchange surgery on Friday morning.  The exchange surgery is removing the expander implants and exchanging them for the actual implants, in my case - silicone. 

My mom took me in because my husband was out of town (for a work related seminar).  We had to be there at 7, so she picked me up at about 6:15 so we'd have plenty of time to drop off my daughter, who got to be the first kid at daycare and got to be the teachers helper (she gets excited about that sort of thing).

We ended up getting there about 15 minutes early, so we sat in the car and chatted until exactly 7, when we went in.  The nurse who greeted us asked if I remembered her from my last surgery, which I didn't so I felt kind of bad, but then later realized she must have been the nurse I saw AFTER surgery when my memory was still messed up from the drugs.

I went in and changed and they had me pee in a cup to ensure I wasn't pregnant.  Now I was very sure I wasn't pregnant, but I have to admit I had a little trepidation waiting for that to come back negative.  That would have been horrible timing for a positive pregnancy test!!  Of course I wasn't pregnant.

The doctor came in and drew on me.  We discussed again what he planned to do, and he said he thought we'd probably end up with the 360 cc implant, and I said - but we'll try for the 400 right? and He said yes, but we might not be able to to do that, and I acknowledged that I was aware and agreeable to whatever ended up happening.  Then somewhere along the line (it's hazy now) I fell asleep and woke up done!  I think one of my first questions was "did we get the 400?" and the answer was yes.  I don't remember talking to him, but my mom said he said I would probably be pretty happy with the results.

One thing I was TOTALLY happy with was that I did not have on the dreaded breast binder.  WOOHOO.  As much as I would have liked to add another to my collection (or not).... I was put into a white front closure bra wrapped with what I'm pretty sure he called a bandoo (compression strap) and then covered by what appears to be basically a giant ace bandage.

Then the thing I was NOT happy with - being told I can't shower until after my follow up appointment on Monday.   I feel sooooo gross when I don't shower daily, waiting 3 days is like torture.

My mom then took me home.  We stopped somewhere for lunch, I don't remember now for sure but I think it was taco bell, then I sat in the car while my mom grabbed stuff at the grocery store for dinner and looked for a twin size sheet that I wanted for the recliner. 

Then we hung out at the house (reclined in the recliner) until it was time to pick up my daughter from daycare.  I went along and we got snowcones, then came back to the house where my dad joined us for dinner.  By the end of the day I was pretty worn out and committed to relaxing more.

But overall I felt really good!  The next day (yesterday) I was really sore, and I spent most of the day resting.  I'm about ready to return to the recliner, but I wanted to post an update.  I'll post more later or tomorrow.  Here are a couple pictures though.  One is of my arm where it apparently put up a fight with the blood pressure cuff, there are little pinch bruises about an inch long circling my arm. not sure what that is about.  and my bandaged bust. note the staple holes.  I will be happy if I never get stapled again!

Blood Pressure Cuff attacked me.

Right now I'm pretty tired and sore, and battling a fairly bad headache, so I'm probably going to spend the rest of the day napping/resting, while my husband takes my daughter out for fathers day. 

Almost Done!

5 days from my exchange surgery!  I've added a countdown clock for my exchange surgery.  I'm so excited to have this done with!  Then all I need to do is heal up and not have to worry about boobs for a LONG time. 

Theres still the matter of ovaries of course, but I can wait a few years before jumping into that.

The pre-op for exchange surgery

At my pre-op appointment on wednesday I got to sign all the forms again and got somewhat different paperwork since it's regular implants not expanders.  I also got a little booklet from Allergan (which is the manufacturer of my future implants).  It has a spot in there for the ID cards for my implants when I get them.  I also got my prescriptions and hibiclense and all my check lists.

Then finally the conversation I've been waiting for... determining what size of implant I'm getting.  So right now my expander is 12 cm in diameter and is filled to 250ccs, they add about 50ccs for the expander material to better equate to the size of a real implant.  So essentially I'm at 12 cm in diameter and 300 ccs.

I really want more projection (how far they stick out).  So I was wanting a high profile implant.  His initial concern was that would give me a more "augmented" (fake?) look.  Then we came to what I think was the mutual conclusion that the way my pec muscles it wouldn't be too fake looking and I am not opposed to a somewhat "augmented" look.

The problem we have is that the 12 cm in diameter high profile implant is 400 ccs.  Even though we plan to open it up a little he's concerned he may not be able to close me up around an implant that big. So then we started looking at the moderate profile and my concern for the 12 cm is that its only 320 ccs, which is i'm guessing not noticablly bigger than I am now (which I want to be).  Going any bigger in the moderate profile means a larger diameter as well. 

So ultimately we've decided that he will have on hand 5 implants, ranging from the Allergan Natrelle™ Style 40 Smooth Round Moderate Profile Silicone Gel Breast Implant 320 ccs at 12 cm to the 400 ccs at 12.7 cm, PLUS the Allergan Natrelle™ Style 20 High Profile Silicone Gel Breast Implant 400 ccs at 11.9 cm. 

The goal is to get in the style 20, he'll use a sizer and have the others on hand and he knows what I want so he'll try to get there. So i'm going to go into surgery hoping for what I want but prepared for the smallest of those options, which technically would still be 20 ccs larger than I am now.  He thinks I could reasonably expect the 360 ccs at 12.5 cm

So we'll just have to wait and see!  I'm okay with that.  I'd rather go in with the possibilty of getting what I want, than settling before hand and not getting what I want and then wondering if it would have been possible.

Here is a picture that shows the difference in profiles with the diameter remaining constant

http://www.drconnall.com/breast/implants/breast-implant-dimensions.aspx

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.