Thursday, December 22, 2011

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!

Monday, December 5, 2011

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.

Monday, November 28, 2011

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.

Friday, November 18, 2011

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!

Saturday, November 5, 2011

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.

Monday, October 31, 2011

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!

Sunday, October 30, 2011

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..( 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 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.

Thursday, October 27, 2011

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.

Monday, October 24, 2011

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.

Friday, October 21, 2011

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.

Wednesday, October 19, 2011

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!

Sunday, October 16, 2011


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.

Friday, October 14, 2011


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

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

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

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

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

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

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

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


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

Tuesday, October 11, 2011

Recovering at Home

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

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

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

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

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

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

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

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

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

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

Sunday, October 9, 2011

Recap of Surgery Day and Hospital Stay

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Friday, October 7, 2011

After surgery quick update

I will post more detailed information soon, but for now I will just say I feel relieved.  Not so much about not having to worry about cancer, but that I had been somewhat concerned about possibly regretting my decision.  The past couple days have been pretty rough, but through it all  (even looking down a seeing my disturbing chest) I've not regretted it.  So I think It must go up from here.

My hands are still partially numb and I got dizzy when I attempted to sit at the computer earlier today, so I will probably wait to do a detailed post until those are resolved.

Tuesday, October 4, 2011

Surgery morning

It's 3:45 am. I'm not sure that I can get back to sleep... I've been trying for an hour. 

Today is the day!  In a few hours I will be going to hospital to have a bilateral mastectomy.  Eeek!  I don't know, I think I'm okay with it at this point.

Very frustrated with how thirsty I am considering I'm not allowed to drink or eat past midnight. 

I got marked yesterday by the plastic surgeon.  A giant geometric pattern covering my chest.  We have to retrace it after each shower.

The shower stuff is weird.  Very sterile smelling.  But it left my skin surprisingly soft!

The injections of radioactive stuff for the lymph node biopsy went well.  It was far more pleasant than I expected it to be.  4 shots in each breast, the first two in each being lydocane to numb it.  Then 2 of the 4 radioactive injections burned a little but faded quickly.  Then I just had to lay in the giant imaging device for 30 minutes or so.  Then they took me out and used a handheld singing radiation detector to find the one sentinel lymph node on each side.  Then they drew on me on covered their markings with tape.  Viola!

I want to say thank you to all my friends and family who have been so supporting through all of this and demonstrated so much care for me.  I appreciate you and love you. 

Wish me luck!

Sunday, October 2, 2011

Dear Breasts,

As you already know, We will be having surgery in just a little more than a day to remove the threat you've become to my life.  I am excited and scared and sad all at the same time.  I've been thinking about you alot lately, and focusing on you more than usual.  I've been looking at you more, and paying extra attention to the way you feel now, because I know I will likely never feel you this away again.

We've been together through a lot and shared many intimate moments in my life. Remember how we were teased by boys in 7th grade?  I later found fancy bras and lingerie to adorn you with.  You made me feel sexy.  We shared the most sensual moments for sure.  You gave me the means to feed my babies, which was precious, and provided comfort to them as I held them close when they'd cry.  I'll never forget those things.

I want you to know that this hasn't been an easy decision. I've felt much grief and spent many hours awake late at night tossing and turning about the choices I had to make.  What it really comes down to is that I know that one day if I don't this, you will kill me.  I can't let you do that.  I can't sit back and wait for you to bring us both down.  So this is what I need to do.  I hope you understand.

Goodbye for now, until we meet again.

With Love,


Thursday, September 29, 2011


I went to bed at 945, read for about 15 minutes, felt sufficiently sleepy, so closed my eyes and fell asleep rather promptly, I had a dream that I now have forgotten and then woke up, eyes wide open, feeling not at all sleepy.  I know it is not yet time to get up because my husband is still asleep and he has to get up more than an hour before I do.  I lay here in bed contemplating what I need/want to accomplish on my last day of work before surgery.  After what feels like 30 minutes of wide awake pondering I decide to check my clock thinking if its close to time to get up, maybe I just will and get an early start.  Imagine my dismay when my clock doesn't say 430, or even the lately typical 230 but rather 1145 PM!!! I've slept less than 2 hours.  Big sigh.  My arm is now tired of text typing this blog on my phone,  so I will now try to sleep again.  Hopefully I will have more restful sleep in the nights to come.

Monday, September 26, 2011

1 week to go

So a week from now I will probably be taking my night before shower with my special soap the plastic surgeon gave me.  This is probably going to be the longest week ever!  And maybe the shortest when it's done (funny how that works).

I had my hospital preop and my breast surgeon preop today.  I found out all the details  OH Shoot, i just realized I forgot a question I meant to ask.  Is it even worth asking if it doesn't make a difference?  Hmmm maybe I'll email her.... ANYWAY, I guess I found out almost all the details.

Monday afternoon I will go into the hospital to "Nuc Meds" to get radioactive dye injected into each of my breasts.  I will then hang out for a couple hours while the dye travels it's way through my breast tissue to my lymph nodes to identify "The Sentinel Node(s)".  They will then do some scans to insure the injections did their job.

Tuesday morning, I will go to the rear entrance (ER entrance) of the hospital at 7am and use my "Express Admit" aka "Hall Pass" to go up to the second floor and get things started for my surgery time of 9am. 

Basically what I was told by the nurse at preop is that a nurse will come in and have me change my clothes and ask me a bunch of questions, then anesthesia will come in and give me an IV and ask me a bunch of questions, at some point my surgeons will come in and draw on me and see how i'm doing, then I'll get something in my IV to relax me, we'll go to the operating room and get me situated on the table and next thing I know I'll be waking up 8 hours later with nurses asking me a bunch of questions.  I'll spend an hour in recovery and then be taken to my room where my family can join me. 

Not sure how I feel about having to be awake going into the operating room... Now that I'm really concentrating on it I do have some vague memory of it now with my other general anesthesia surgeries.. kind of creepy.

So the for the 8 hours of surgery - I really have 7 1/2 if everything takes exactly how long they said it would.  So 45 minutes for sentinel node biopsy for each side (1 1/2 hours total).  Then 1 1/2 hours per breast for the mastectomy (3 hours).  And 1 1/2 hours per breast for expander placement reconstruction (3 hours).

There was a moment in the hospital today that I was a little concerned... The preop nurse was looking through my stuff and said "okay so on Tuesday we're going to be doing bilateral reconstructive surgery with expander placement with Dr. W?".  and I thought a minute and realized they had only ever to that point mentioned the plastic surgeon.  so I said "after I have a bilateral mastectomy with Dr. P...."  and she looks surprised and looks at the paper and says "Oh what, you're doing both at the same time??"   "yes....."  Then she found the other surgery paperwork and all was good.  Had me a little worried though for a minute (thank goodness for preop - I'd prefer to avoid that kind of confusion on surgery day!)

My hormones are out of whack... probably the stress.  It feels like boobs are aching in anticipating of this.  They are incredibly sore.  A friend pointed out today that after next week I won't have this problem anymore!  Way to find the silver lining!   That works for me.  I just need to get through this week without losing my mind.

Wednesday, September 21, 2011


Check out The Scar Project:  and on youtube:

I can hear a couple of you asking, "so what does this make you feel?" (or something along those lines).  Well, it makes me feel lucky.  My understanding is these women had/have cancer.  Sure I have an extremely high risk of cancer, but I don't actually have it actively trying to kill me.  I don't have to go through radiation or chemo and be sick and have pain from the treatment and lose my hair.  I'll have recovery from the surgery, and I'll have my scars, and that's it - I'm lucky.

My cousin mentioned one day that she intended to comment to one of my posts something about scars telling a story.  I've thought about that a lot, and determined that whatever she was going to comment (which she never did) was probably profound and something I'd like to elaborate on.

We all have scars.  I'm not sure about you, but I know I've had at least a couple experiences with comparing scars and telling scar stories.  And now that I've really thought about it... the scars have stories, but the scars also do tell part of the story about us.

I have 2 distinct scars on my forehead from when I had chicken pox as when I was 2 years old.  I've always hated them and been self conscious about them.  But I remember when I was sick and the daycare had me in the office waiting for my mom to pick me up and I played with a little box that mooed when I turned it over.

I have a little scar on my hand where my grandmother accidentally burned me with a cigarette when I was probably around 6.  She used to save bags of coins that she would give to my brother and I.  She gave him the nickles (because he was older) and she gave me the pennies.  She just happened to be holding the cigarette in her shaky hand when she was handing me the bag.  I remember that her room smelled like cigarettes and old lady lipstick.  I still find the smell rather comforting.  When we'd spend the night there I'd sometimes sleep in her bed and she'd sing "You are my sunshine"

I have a scar on my knee from when I was 8 where I fell off my bike down a hill in some gravel and some stranger carried me home.  I was a free spirit in that little town.  I went everywhere and I was fearless.  I was tough.  I have a picture of me  wearing my swimsuit later that day with my friends, my knee was still bleeding - no band aid!

I have stretch marks (which are scars) on my stomach and my breasts and my hips and my thighs and even my calves from when I gained an incredible amount of weight in my first pregnancy.  My young body just wasn't prepared to stretch that way (and I probably ate for 4 instead of 2)!  But I got a beautiful (large) and healthy baby girl out of the deal.  Those stretchmarks remind me of both the childhood I gave up as well as the child I was blessed with.

Then there is my c-section scar.  I had a dream shortly after my second daughter was born via emergency c-section where I was in a room with my mom and my exhusbands wife and the 3 of us were comparing our c-section scars, and it felt like a ritual of some sort to bond us in our motherhood.  Like we've experienced the same thing, we are mothers, we had our bodies cut open to deliver/save our babies, we understand each other.   That scar reminds me how scary it was to think I could lose this life inside me.  It reminds me what a gift it is to give life and how precious and fragile that life is.

So then there are my mastectomy scars.  They are yet to be seen, but what I hope for is that they'll remind me how lucky I am, and the story they'll tell is that I said "NO!" to Cancer.  I was given a gift from those who tragically didn't have this opportunity.  They gave me the knowledge and thus the opportunity to empower myself and hopefully stop it before it even starts.  They gave me the opportunity to see my children grow up, and live my life, and someday be a crazy old lady telling stories about all these scars on my body!

Monday, September 19, 2011

The Plastic Surgeon - Pre-op

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

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

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

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

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

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

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

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

Thursday, September 15, 2011

Countdown Clocks and my MRI

I have countdown clocks.  Such as the one on my blog saying 18 days until surgery!  (18 days!!) I have 2 more on my phone - 101 days until Christmas!  AND  115 Days until 30!  It's quite strange watching the days tick away.  I clearly remember having 300 days until my 30th birthday, and watching each one and wondering if I'd feel some sense of urgency when it was down to just 100..  I'm close.  But really it will be just one more day down.  Maybe I should then change it to days until I'm 31.

So we've made a couple steps towards finalizing things for the procedure.  I found out at work who would be covering for me.  It is FAR from ideal.  And I could probably write for an hour on how upset I am about it and why, but like I've been saying - it is what it is.  We just need to make the best of it.  Atleast we found out now and can start training and making arrangements instead of doing it all last minute like I was beginning to fear (though based on who it is, we really could have known a month ago, and had things a little more in order....BUT OH WELL).

I also had my MRI yesterday.  Okay.. MRIs are weird.  The guy who checked me in and really walked me through the procedure was the same guy who did it all at my MRI last year.  He is extremely friendly and chatty and easy to talk to which probably helps his case when he's kind of an older guy who has to get your boobs situated properly in the machine without freaking you out. 

I wore scrubs for this adventure.  But the funny thing is they make you keep your shoes on atleast until you mount the machine.  So since I was coming from work and going back to work afterwards, I was wearing my oversized hospital issued blue scrubs and my black peep toe high heels.

He set me up with an IV, placed a giant scrub cap/hair net thing on my head, and squished some ear plugs in my ears.  Then I got all situated on this table where I had to lay face down with my arms above my head and my boobs dangling freely...  (awkward...)  He put a big warm blanket over me which made me feel a little better.  Then he messed with my IV a bunch which wasn't very pleasant, slid my table back into the machine and then he left, and I had to lay perfectly still while this machine around me buzzed, and beeped and knocked.  They have it fixed with a mirror so that even though I was laying face down I could see straight out in front of me (where the top of my head was pointed).  I think that helps with the claustrophobia.  The time is really only broken up by the imaging person speaking every once in awhile "you'll hear knocking for five minutes now, be very still",  then five minutes later "There will be silence for 2 minutes now, please remain still".  This went on for atleast 20-30 minutes before the guy came back in and injected my IV with the contrast dye and told me only 5 minutes, then 6 minutes left!  Not sure why he didn't say 11 minutes...

My skin is very impressionable, so after laying face down with a folded towel between my face and the head rest, I had major towel imprints and lines all over my face!  They were mostly gone by time I got to work, but I'm sure I looked pretty funny at the hospital.

Then it was maybe 3 hours later and my surgeons office called.  I had a moment of fear/panic of course where I thought "oh my gosh it must be bad for them to rush the results like that!"  but no.. she said they got the results and "everything looks stable, there are no new lesions" and they would discuss it in more detail at my preop!  So thats good news, and just further reinforcement of how awesome my hospital and doctors are.  

Next week is preop with the Plastic Surgeon, I expect it to be informative.  I'm bringing my husband, we can really get to the details of the reconstruction, what I can expect there now that I have the clearance I need from all the other doctors! 

Monday, September 12, 2011

Let's not commit to anything....

So I've realized there are a few uncertainties in my future.  Such as, when exactly I'll return to work and what that will be like.  I'm pretty sure nothing will go wrong, and I'll be back to work in 6 weeks as planned, but there is always the possibility I won't.  I'm taking part in an online "academy" related to my position at work and it involves homework and teleconferences, and I've not been very good about doing the homework all year anyway, so I kind of feel like I might as well just quit the academy now, because I'm going to be so far behind and I don't know that I'll have time to catch up when I get back. 

I haven't joined any committees because I knew this would be coming, and today HR sent out a notification that we'll be training on 3 of our major policy and procedures manuals, one of which I'm pretty much an expert on (maybe more so than anyone else at my location), and she is looking for volunteers to train on sections of these at each "all employee meeting".  I had clicked reply and started typing... I was going to say "when I return from my leave I'd be happy to do one of the training segments, maybe let's schedule it for a month or so afterwards if possible to ensure I'll be back and ready to present... " and then I stopped and realized, sure I'll be back, but WILL I be ready to present?  Presenting means getting in front of people, people looking at me....  What If i'm not ready for people to look at me??  When will I be ready for people to look at me??  Who knows.  I closed the email (I didn't even save the draft).  Maybe when I get back, if I feel confident and comfortable, I'll reach out and let her know if she has the need still I'd be willing.  But for now..... I'm not committing to anything at this point. I'm not going to put that pressure on myself.

So, we have 3 weeks to go and I still don't know who I'll be training to fill in while I'm gone... we're pretty much past the point where someone will have appropriate system access to get reasonable training... But what will be will be.  I've realized that no matter what, in 3 weeks I'm leaving and I am having this major surgery, and Im going to be at home and needing to focus on healing for a length of time, and I gave my work 2 MONTHS notice, and I just can't worry about it.  I'm not going to beat myself up over it, when I did everything my in power to make things go smoothly while I'm gone.  I hope I don't come back to a mess... but it is what it is, and I'll just have to deal with it the best I can when the time comes. 

I sure talk big, don't I?  I've been really stressed and angry about this...  maybe I'm just now coming to terms and this will be my new stance?  I hope so. 

Sunday, September 11, 2011

Telling People - Part 2

One of my challenges going through this has been figuring how and what to tell my daughters about all this, particularly the older one.  She's 13 and I can imagine that this could be something very scary and/or confusing.   She was away at her Dad's for most of the summer, so I didn't want to drop all this info on right away when she got home, but I wanted to give her enough advance notice that the event wouldn't seem shocking and last minute.

The four of us went to lunch yesterday (we got Subway and took it to the park).  After eating, my older daughter and I left in one car and went to get some icecream.  In my head I had planned to tell her while we ate icecream, but then as I was sitting there eating my icecream, watching her eat her icecream, I realized this wasn't the best idea.  I had alot of talking to do and my icecream was melting quickly.  So I waited until we were back in the car, just started talking.  I'm glad I had some practice in advance. 

I told her that we found out I had a "condition" which made me very likely to get breast cancer.  I explained the increased risk.  Her eyes widened when I told her 84%.   I explained that I was going to have surgery to reduce the risk, and I explained what the surgery would be.  She seemed to understand.  She didn't seem overwhelmed by it, and I let her know that if she has any questions at all to feel free to ask.  She mentioned that her Aunt (her Dad's step sister) had breast cancer, and had lost her hair. and I said, "so you can understand why I would want to prevent that right?" and she said, yes, she didn't want anyone else in her family to have to have cancer.

I explained a little more about the surgery and that I would be in the hospital for a few days, and out of work for about 6 weeks, and that I wouldn't be able to do much at all for the first couple weeks.  I told her that I might have drains that might look really weird.  I told her I was telling her all of this so that she wouldn't be suprised when I got back.  She indicated she's seen grosser things in movies and didn't think she'd be too bothered by the drains.

I also told her about what our plan was to tell our younger daughter, and that her help would be appreciated in helping this not seem scary.

I feel like this was "the big one" as far as people I have to tell for now.  And of course this is only part of it.  The rest will come years from now, when I have to tell each of my daughters as adults.

Tuesday, September 6, 2011

Natural Sugar isn't white??

So this year has been a big body adjustment for me.  Let me paint a picture for you - this time last year I had recently quit smoking (which was quite an adjustment in itself) I was filling my smoking cravings/stress release with candy and misc. snacks, giving in to every whim of what I craved to eat..   

So a diet wise, a regular day (AT WORK) could consist of:
a 16 ounce energy drink
a poptart
6 rolls of smarties
a hand full of "chicken in a biscuit" crackers
a pack of starburst
2 bacon cheeseburgers
a small french fry
a 20 ounce pepsi
a bag of peanut butter M&Ms

Soooo I suppose as most people could guess I VERY quickly gained about 20 pounds.. Then I had my lung/autoimmune situation come up and as I went through all that I gained another 10 pounds. 

Somewhere along the way, in the last few months, I realized I need to make some changes, (gee you think??)  It's soooo hard, because I have always been able to eat whatever I want and not have weight issues and not have it really affect me, but I've concluded that at least 2 things make my autoimmune inflammation pain worse - lots of sugar, and coffee.  And obviously my metabolism has taking a dive.

I also realize that even though I'm removing my breasts to prevent breast cancer, that's not the only cancer associated with the BRCA 2 mutation, and having a healthier diet can only help.  So I'm trying gradually to shift things around.

I successfully changed from energy drinks to coffee back when the autoimmune thing first started, now I've switched from coffee to green tea.  And I switched from sweetening the tea with sugar, to sweetening it with honey.  Instead of drinking soda daily I'm trying to limit myself to just a couple times a week.  I'm taking a couple supplements (fish oil and magnesium).  I'm trying to bring lunch to work so that I don't drive to Wendy's, and when I do, I get a plain chicken sandwich instead of 2 bacon cheeseburgers!  I'm trying to not eat candy... I've had rolls of smarties sitting in my desk untouched for 2 weeks now!!

I've been exploring health food stores with my sister (from afar via text) looking at various teas and supplements.  Then I went to spend the weekend with her and learned soooo much.   About organic food, and different tea and how you shouldn't take supplements with green tea, and there are flavored fish oils you can add to stuff (like YUMMY green tea frozen yogurt with lemon zest fish oil added).  I'm still not entirely sold on stevia.  It has a very particular taste that I can't quite wrap myself around, but then she mentioned that if I was going to have sugar, I should at least have organic sugar, and she showed me a bag that she had stowed away, and it was brown!!  (well... off white).  It had never occurred to me that sugar wasn't naturally white.. that it was bleached!  Ya, I think I'll switch to organic sugar. So that's just on food!

I've also started to switch my body care. I didn't realize that toothpaste has saccharin in it!!   There used to actually be labels on gum that contained saccharin about it causing cancer in lab rats, and we're brushing our teeth with it!?  So there are good natural non-cancer causing toothpastes out there, that I got to try out on my visit.  So I might switch that too.I still love my Bath and Body works lotion, so until someone shows me that they cause cancer, I'm not giving them up.  I changed to a "natural" shampoo.  Instead of using a chemical anti-aging/acne face wash I'm using a natural olive oil/aloe face bar, That's it.. glycerin, olive oil, and aloe.  Then instead of using the chemical face acne medicine/toner... whatever it is.. I just use aloe.  And I have not had a breakout since switching (it's been 3 months!).   

So I'm trying... I still give in here and there, like when my coworker bring yummy chocolate cake with peanut butter frosting.. or pumpkin chocolate chip cookies, but maybe I'll just have 2 cookies instead of 6.  I still feel like there are things I love, and I'm not at a point where I'm ready to give those things up entirely, but I can certainly take a  generally healthier approach and then treat myself to those things!  (and it really does taste soooo much better when you've resisted it awhile).

Wednesday, August 31, 2011

I'm more than my boobs!

I was talking with my cousin today, about the kind of grieving process I'm going through with this, and I commented something about boobs being a part of my identity.  and she told me, "you are more than your boobs".   (sorry if this was not the exact quote.. this is the quote in my memory right now and it works)  And yes.  When you look at it that way.. I am!    Boobs are great and all... and I love mine, but there are definitely more important things, not just in life in general, but about me as a person!  It's not like I'm losing my feet, or my hands, or my eyes, or my LIFE.   Seriously, I'm back on the band wagon!    Just 33 more days to go...

Monday, August 29, 2011

Roller Coaster

Today was kind of rough for me mentally.  I was heating up my leftover breakfast burrito for lunch in the microwave at work, when suddenly I had this vision of the mastectomy animation I watched on YouTube.  It wasn't graphic or anything, but the idea of them basically cutting my breast in half, taking out the insides and putting in foreign stuff (the alloderm and expander) only to have to do it again to get the actual implant... ugh. 

It seemed so unreal that I was actually going to do that.  Then I had visions of the scars and stitched up incisions across my chest in place of breasts, and it was just too much to fathom.  No way was I actually doing this!  I had to settle down a bit... "Calm down Amanda, you're just freaking out... get the food out of the microwave and get back to work".  (I said this in my head.. not out loud). 

So I did okay at pushing out the thoughts the rest of the day.  I was super busy at work.  There was enough drama today without bringing my boobs into it!

Then on the way home I couldn't stop thinking about it again.  Felt like some weird stages of grief or something.. I was thinking am I in denial?  Is this the disbelief stage?  I had to remind myself, I'm doing this to avoid cancer.  I started feeling nauseous.  There were the 2 sides of me having this conversation

"You saw those women at the meeting, some of them had cancer and they're doing fine now!"

"Ya, but they still had to have mastectomies and weren't able to do immediate reconstruction and had to go through chemo!"

"Ya, but they didn't know about the mutation before hand, you do, you can find it earlier!"

"Maybe I can!  But maybe I won't!"

"Maybe you won't get cancer at all!!"

"But maybe I will, PROBABLY I will, and maybe I won't find it early enough, and maybe I don't want to be afraid all the time!"

Again, this is in my head - not out loud.  (no need to lock me up yet).

I'm scared now.  I'm afraid of the scars.  I also really for the first time considered what if they find cancer in the surgery.  I've acknowledged it as a possibility, but I hadn't *really* thought about it.  What if they find out I have cancer, and I can't keep my nipples, or worse I wake up without the expanders!   What if after the surgery I go to bed every night and wake up horrified at my scars and that this wasn't some crazy dream. 

I'm having a hard time with the bigger picture right now even though I KNOW - I'm potentially saving my life.  This is the right thing...  I'm sure I'll think so again tomorrow. (hopefully I think so the day after surgery).  

Oy... 36 more days of this roller coaster!  No wonder I'm nauseous.  Get me off this ride!! 

Saturday, August 27, 2011

1st Support Group Meeting.

Wow.  Just  now as I sat down here to write this post, and had to figure out a title, I realized I have never, before today, been a part of a support group and now I am.  I suppose most people haven't belonged to support groups.   But it is nice to be around and talk to other people that can relate to what you're going through and what you're facing.

Today was the first Boise meeting for the local FORCE group.  Reminder: FORCE stands for "Facing Our Risk of Cancer Empowered."  which is an organization aimed at woman with a BRCA mutation or  other high risk factors.  Check it out here :   They developed the word "Previvor".   They have an annual conference in florida where hundreds of women get togther and have seminars and networking functions.  I've frequently read and occasionally post on the message boards.  I was excited when I learned that a group had been developed locally.  I read about these meetings and groups in other parts of the country and wished I had something like here.

There were about 12 people plus the 2 coordinators, all women.  There were a diverse selection of women.  Seemed a fairly good range of ages.  The majority have tested positive for a BRCA mutation.  A couple hadn't tested yet but had a strong family history of breast or ovarian cancer.  Some were survivors who have already had cancer, some of the previvors had already had a mastectomy, a couple hadn't yet (but were planning to).One neat thing is that you don't necessarily have to be a survivor or previvor to go to these meetings, you can go as a supporter, like someone who has someone close to them who is going through this, such as a woman who was at the meeting today who has a BRCA+ neighbor as well as people in her husbands family with a BRCA mutation.

The agenda was mostly about introductions, meeting eachother, and finding out "what brought us here".  The coordinators were really sweet.  They had decorated in pink and teal, pink and teal plates, and napkins, and ribbons and even m&ms.  They had door prizes - a basket of goodies and pink flowers (roses bushes?).  Sandwiches for lunch and chocolate chip cookies with m&ms (pink and teal).    The next meeting will be sometime in November, and they're planning to have like a "movie night" where they'll screen a popular documentary on the subject (which I've been wanting to watch!).  So that will be cool.

I'm really looking forward to future meetings and getting to know these women better!  Yay for support groups!

Tuesday, August 23, 2011


Ah!  41 days away!!  I'm getting nervous about time.

I have all but one of my pre-op appointments set.  I have my MRI on the 14th, my plastic surgeon pre-op on the 19th, breast surgeon pre-op on the 22nd.  Hospital Pre-op on the 26th....  I'll likely have an appointment on the 3rd for injections (for the tracing for the sentinel node biopsy), then the surgery on the 4th! 

My older daughter is back from her summer with her dad.  I'm so happy to see her.  2 months is too long!!  But that means summer is over.  She starts school in 2 days. 

I'm going to Denver in a week and a half and I'm so excited, but I'm guessing the way time flies it will be like stepping off the plane and getting right back on it, 2 weeks from now when I'm back at work after the visit.  Oy. 

Then work - I feel like I was really going to be prepared, give enough notice, work enough to get things totally in line so it would be smooth flowing while I'm gone.  I'm feeling like things aren't working in my favor in that area.  I really don't want to worry about work while I'm recovering!!  I'm not going to lie.. I *would* like to know what is going on.. but I really want what is going on to be good and not stressful. 

Saturday, August 20, 2011

Thoughts - 44 days away.

The other day my husband and I were discussing fear of dying.  He was saying he's not afraid to die.   I found myself thinking that day, that I am afraid to die.  Not just because I worry about others, but because I want to LIVE.  I'm just not ready to stop.    This line of thinking made me feel like perhaps I was selfish in my desire to live.   But as I read another blog today describing a woman remembering losing her mother to breast cancer -  I realize that it's not entirely selfish.  I don't want my daughters to experience that,  It makes me cry to think of a daughter losing her mother.  I am so thankful to have had mine all my life.  I can't imagine the pain of losing her to something like that.  I feel like a mothers love can be so powerful, so fierce.  Just as i can't imagine losing my daughter, I don't want my mom to lose hers either.  My mom told me she wished she could do this for me, so I wouldn't have to.  I know exactly what that feels like.  I feel the same way about my daughters, I wish I could do this three times over if it could prevent them from having to face this.  But for now it's enough that It will keep me alive, so I can be here for them, and for my mom, and just live.

Friday, August 12, 2011

Telling People

As this situation has progressed I've needed to inform various people of certain aspects of everything.  Its been easiest to talk to the people closest to me - I've kept them informed the entire time.  From the time I said, I'm going to get the genetic test done, I've been updating these people - my parents, my husband, my sister, my cousin, and a couple friends.  So as something new develops it's just a little update I need to provide - no big deal.

But recently I've had to tell people who have not been part of this journey to date, such as my daughters grandmother, I've mentioned this situation a few times in previous blogs, but I finally got together with her and explained it all.  Luckily (?) when you say "let's go to lunch sometime, theres something I need to talk to you about" that something comes out a little more naturally than it would just randomly out of the blue dropping it on someone.  It was still difficult, and I realized I had to provide alot of the filler information to get from point A to point B.  I can't just say I'm BRCA2 positive so I'm having a mastectomy. 

I also experimented (not intentionally) with just dropping it on someone when I told a not so close coworker at our weekly meeting.  I'm not sure why I told him, he's the head of another department, and our departments rely heavily on one another.  If he was my supervisor I definitely would have told him, and honestly I needed to tell him I was going to be gone for an extended period of time, he's shared alot of his own medical things with me, anyway, I started out saying I will be gone from the beginning of October through the middle of November, and of course he looks confused, so I tell him it's a medical thing. Then he looks concerned, and I've already learned that I don't want people to think I have cancer when I don't, plus I know what curiousity is like, and I kind of feel like telling everyone so that while I'm gone they're not gossiping and when I get back they're not staring at me trying to figure it out.  so I just told him, "I have a genetic thing that has increased my risk of breast cancer to 84% so I'm having preventative surgery."  We exchanged some fairly awkward dialog on the subject, and then went back to what we were meeting about to begin with. 

It becomes easier and easier to discuss.  I think sometimes people expect me to be emotional and display my fear, and maybe cry a little bit.  I wonder if when I don't, they think I have blinders on to what will happen, or that I don't understand the magnitude of what I'm going to do to my body, or what it means for my future.  But it's like anything else I've dealt with really... You can't live in that state constantly.  I am (sometimes) scared.  I do (sometimes) cry.  It's honestly enough that it occupies my mind the way it does, I can't allow it to also have me in a constant emotional state.  I just don't think one can function properly like that, and while all this is going on, I still have a job to do and family that depend on me to be sane.