Welcome to My BRCA Blog. I'm Amanda, I'm 30. When I was 28, I tested positive for the BRCA2 gene mutation increasing my risk of Breast Cancer up to 84% and my risk of Ovarian Cancer to 27%. I recently had a prophylactic mastectomy to reduce my risk. I am using this blog as a forum to express my feelings through this journey as well as to keep others in the loop. Newest entries are on top, scroll down or use the links on the side to see older posts.
Monday, January 30, 2012
Today's post-op appointment
Unfortunately the right one was a little red, which isn't what we would have expected since it's the left one that has been giving us trouble so far. But he thinks the redness is due to stretching rather than infection, so we'll just keep an eye on it.
He gave me clearance to wear a soft bra for now. Once the redness goes away we'll look at getting a good underwire bra to work on shaping the pocket. He commented that at 100 ccs in the implant and 50 ccs for the implant itself, I was at about 150 ccs, and if we had to stop there we could. I didn't like hearing that, I feel WAY smaller than I want to be. I would not be pleased to remain at this size!
I think because I was feeling so good (compared to this point after the prior surgeries) and because I don't have drains, I was expecting other things to progress along. I wanted him to be impressed by how I was doing (and ask what my secret was and I'd tell him about the cinnamon) and he'd decide to do a fill and give me hopes of achieving the breast size I had always wanted! But none of those things happened, and after the doctor left the room, I cried.
It was a little awkward, because the doctors assistant came in to give me my prescription and seemed startled to see me crying, and then she told us we could have a minute, so I tried to get it together, and then we went out in the hall and the esthetician came up and gave me a coffee mug with a certificate for a free facial or microdermebrasion. Part of me pondered if after the assistant came in and saw me crying she went out in the hall and got the esthetician and said "quick.. she's crying... give her something!". hehe. They were probably planning to give it to me anyway, and it just happened that she caught me crying first.
Anyway, again I need to remind myself - its only 3 days after surgery. I need to rest and heal and give myself a break. I need to be more patient. I don't want to give my new boobs performance anxiety! I just need to let them do their thing....
Friday, January 27, 2012
What? I just had surgery?
But one piece of exciting good news - NO DRAINS!!! Woohoo! He decided it wasn't worth the added risk of infection this time around. I won't argue with that decision. It's soooo much better without them.
Now its time for a nap.
Thursday, January 26, 2012
Getting expanders tomorrow!
Wow! I can't believe how fast time went by. I'm not going to get into the thoughts of how horrible I had thought it would be to wait so long and now we're here and that's over. I'd rather keep in the back of my head the knowledge that something still could go wrong and I could end up back where I was 3 months ago (learning is be boobless for sometime). Of course I will be hoping for the best and thinking positive thoughts... I just don't want to be caught off guard again if things don't go as planned.
So I've showered with the hibiclense prepared ny clothes for tomorrow, ate a big dinner (since I won't eat again until late tomorrow), painted my finger and toe nails sparkly pink, and set my alarm for 5 til 7 so I can take a few drinks if water before its forbidden... Then tomorrow I will get up, drink some water, get the kids going, shower with hibiclense again, get dressed.. I will probably blowdry and straighten my hair.. then we will drop off the youngest at daycare on our way in. My mom will be meeting us there.
Im super excited about getting the expanders put in, but I'm definetly nervous too...
Better get to sleep.. got a big day tomorrow!
Sunday, January 22, 2012
Not feeling ready!!
Ok so 4 full days.. 4 1/2 really, until the surgery to get my expanders put back. I was sooo excited to get to do this earlier than originally planned, but I feel now like I'm not nearly prepared enough!
Stuff keeps coming up at work preventing me from getting things *ahead* for when I'm gone. I know its half the time and they won't need to complete a full cycle, but I feel like I should leave them in the best position possible to manage things while I'm gone and I don't feel like I'm there yet.
Then my daughters 5th birthday (as well as my husbands birthday) is less than a week after surgery. There is still shopping and party planning, not to mention wrapping presents and getting goody bags together and then hosting her party! Oy what was I thinking??
There is just random other stuff too, I still need to fill prescriptions, do a bunch of laundry and organize it for what I will need handy, clean all my bedding, find my pill organizer, determine the most reliable thermometer, deep clean my bathroom. Figure out how to get my older daughter to her appointment Thursday since I can't justify leaving work early when its the last day before I'm gone for 3 weeks. I think I'm starting to freak out.
Tuesday, January 17, 2012
What is Under My Shirt?
Well thats nice of them. I know there is a fairly substantial size difference between what I had going on before and the forms I'm using now, but maybe that goes to show that people just don't pay *that* much attention to my boobs!
Anyway, so while I am planning on sharing "pictures" sometime soon.. I'm still not there, but I will share a non body picture of what is making me appear normal from the outside.
So this is what is under my shirt:
I wear this bra (or one like it) with the "forms" inside the cups over a thin sports bra and under a camisole.
I don't like to wear the forms directly on my skin (so the bra underneath) and If I don't wear a camisole over this bra the shape isn't quite right, not to mention without the camisole it would be obvious I didn't have boobs if you snuck a peak down my shirt.
But this setup beats nothing, and far exceeds the weird nursing pad, surgical gauze combo I had going initially after surgery.
10 more days!!!
Thursday, January 12, 2012
100 Days Since Mastectomy!
Well. It doesn't end here. I just hope the next 100 days are better than the first, and continue to reaffirm what the goal was. 100 days ago I removed my boobs and put up the "No Cancer Allowed" sign.
Maybe when it's been a year I'll feel like throwing a party. Or better yet 10 years! THAT will be the real milestone.
Preop Appointment Today
I pointed out the two little weird spots that I have that he confirmed are loose sutures, so if he can readily access them while he's in there, he'll get them out, otherwise they'll still be okay, they'll disolve over time. He also said I'd have the smaller drains this time, technically "Medium" drains, but they're small compared to the ones I had after the infection, so that will be nice! And he said I will very likely have them for a much shorter time period. YAY.
When I asked the nurse whether I should bring something like a breast binder, or a front closing sports bra, she said no, they would be putting something on me.. she's pretty sure a breast binder. My husband asked if they had something other than pink or blue... (since we currently have 2 blue and 1 pink...) she laughed and said no.. just pink or blue.. with flowers. Another pink one would be nice I guess, I (semi) joked with her that it would be nice to have white, or black.. you know something more neutral.. She didn't like the idea of white because of staining.. but thought black would be cool. Oh well, maybe someday she'll find herself in charge of ordering them and someone in the future will get a cool black breast binder! Seriously though.. who needs 4 breast binders?! And I'm guessing now that I'll end up with a 5th before I'm completely finished.
It really is somewhat of a pain to be allergic to 2 major groups of antibiotics. It is apparently quite limiting. So I'm hoping all goes well and there are no infections!
So, back to the time frame. I will go in at 9 am. I can't eat or drink past midnight, and have to do the special cleaning the night before and morning of, just like last time. I will probably be dying of thirst by time I reach the office (that's how it goes, when you're not allowed to drink.. suddenly your more thirsty than you've ever been in your life! Thats how it is for me anyway)
He said he will probably be operating a total of an hour and a half or so, but there is time on both sides for getting me in there and under general anesthesia and then finishing things up and getting me awake again. He estimated I would probably leave the office around 1:30 or 2. I'm a little nervous about this.. I've only had one outpatient surgery before and it was a seemingly much simpler breast biopsy... But if for some reason something doesn't' go right, the actual hospital is just right there... practically across the parking lot.
Nothing will go wrong though. I am confident. This will be as easy as we could hope for!
Thursday, January 5, 2012
New Countdown! Surgery Scheduled!
He said I'd have the drains again for about a week (bleh) and then at some point... maybe a couple weeks (?) we'll start doing the fills and fill for about 6 weeks, then they'll need to sit for a few months. He's not going to have me take any antibiotics preemptively. He was saying there some merrit in doing a long course of a particular antibiotic followed by a sulfa antibiotic, but we can't do that because I'm allergic to the sulfa. But he doesn't think at this point that we really need to do anything differently than he would with someone without history.
This was good news. I'm excited to get on to the next step towards being done with all this! And I'll have boobs!!
Tuesday, January 3, 2012
3 Months Post PBM - Update
So here is an update of how I am doing with this right now:
My arms are pretty much better. They tire easily, and feel really weird if I hold them up for long periods of time.
My arm strength is improving.. I can carry my 4 year old.. though it takes more effort than it used to.
I have mostly the generally achy feeling I had before all this from the autoimmune inflammation, I do feel it more sometimes around my would be breast area, like little twinges from the skin and tissue that was affected.
I can sleep on my stomach!!! Yay! I still mostly sleep on my sleep on my sides, but occasionally will slip onto my stomach.. I'm going to really enjoy this for the next 6 weeks, because I know I'll be stuck on my back once I get the expanders.
I still don't feel sexy...
I imagine that once I have boobs, even weird expander boobs.. I'll probably feel totally sexy, like "look at me! I have boobs!"
The majority of the day I don't worry about my booblessness. I've found a system that works for keeping the breast forms securely in place and most days (in most clothes) I don't even worry them. There are some outfits I try to wear some days that cause me a little more concern.. I have to pull up my tank top once in a while to make sure there is no gap, though I've been assured that someone would have to be creepy to be peering down a tiny gap in my tank top (and they would deserve the unpleasant surprise of nothing there...).
The numbness under my arms seems to be decreasing.. it's still fairly substantial but definitely less than it was.
I tire easily, but I don't know if that is more related to the autoimmune thing, or the surgery... or the combination of both.
I wore mascara today. Success!!
Sunday, January 1, 2012
New Year
Be a more patient mother. After watching 19 Kids and Counting, about the family with 19 + children on the episode where they answered viewer questions, the mom answered the question about patience by saying basically it's just a decision she always has to make, she chooses to consider how what she is going to say or do will affect her children's feelings and their relationship.. Somehow that leads her to be what I have often viewed as unrealistically patient and gentle. I've never seen her yell or be visibly angry or even frustrated. And I always thought that would be an impossible thing for me, that I'm just not that person (not that I yell all the time... but I sure would like to do it less...or not at all) but then she made the comment about it being a choice and so I think I want to give it a try. I want to try to CHOOSE to be patient and kind. I failed today when I was cooking my dinner and had hot food on the stove and a roast in the oven and the microwave going and one kid who had said she had no homework for the whole school break and then found something she needed to do the day before going back and then zoned out for the entire day while she was "working on it" when it should have only taken 30 minutes and then a dog in the kitchen and the 4 year old wanting MORE snacks..MORE chocolate... AAAAAAH!!!! but I'll start again tomorrow and give it a shot. It's just 2 kids... not 19!
Be Happier. Just like the last one, I assume much of this is a choice and takes practice. I want to view the glass half full. I just need to choose to do so sometimes. I want to make that choice more often. I'll apply that to work and home and body. I want to enjoy my life, and sometimes I think you have to push the negative aside and just focus on the positive. I need to do that. If I succeed this should help with my relationships with my children and husband.
Drink More Water!!! This has been on my list for the last few years. People are supposed to drink like 8 glasses of water a day? I sometimes (frequently) drink none. NO water whatsoever. I do drink liquid.. in the form of the juice or soda or tea or alcoholic beverages...but no water. So I will try again, as simple as "drink water daily". Once I can manage that, I will work on quantities.
Become Healthier. I think that some of this will come naturally if I follow through on my other resolutions. If I'm more patient I will likely feel less stress. Positive thinking should improve my health. Water should make a difference too. So this also will include my choices about exercise and what I eat and drink. Hopefully by more carefully managing the balance in these areas I will be able to get my autoimmune issues under control and just generally feel better which should also help with the happier resolution!
Get boobs. I want boobs! I will go to my appointment this week to arrange a time to get them, and then I will do everything in my power to get through the next two surgeries and recover without any more infections! Working on all my other resolutions should help with this one too!