Sleep

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.

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.

Scars

Check out The Scar Project:  http://www.thescarproject.org/  and on youtube: http://www.youtube.com/watch?v=GI5w6Bv5eZs

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!

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....

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! 

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. 

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.

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).