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...

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!! 

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 : http://www.facingourrisk.org/   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!

Nervous

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. 

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.

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.

Reading



http://www.jessicaqueller.com/



I read a book called "Pretty is What Changes" by Jessica Queller.  It was eye opening, and really helped to confirm I was making the right decision. 

I know it probably sounds like I'm constantly seeking this confirmation... but I am.  I really do sometimes step back and think "what am I doing?  This is crazy"  But then reading this story of this woman watching her mother deal with ovarian cancer after a battle with breast cancer and dealing with her BRCA mutation, really helped to solidify it.  I don't want to go through that.  I don't want my children to watch me go through that.  

I've been blog crazy about this.  There are a number of women going through this same thing that are sharing their stories and experience in this format and I've been reading all I can find.  Then I also found this book (which I bought for the Nook app on my phone).

58 Days to go!

As my countdown clock reminds me, I only have 58 days to go!  I've been reading a blog the last few days of a woman who found out she had cancer and underwent a bilateral mastectomy with expander reconstruction.  Her timeframe was so much smaller than mine.  I have to say I am thankful for the time I have.  On the medical side, the people planning appointments and imaging and procedures all seem to be treating it as though it is still soooo far out there, while I'm here feeling like I'm running out of time to get everything done I need/want to do before doing this!  But I'm so thankful that this is a choice I've made - I was able to choose a time frame that is "ideal" and plan for it!  I'll be as prepared as I ever could be I suppose.  Some people don't have that luxury.  I am blessed.

I also have been arranging with my sister to go to Colorado for labor day weekend and get some relaxing sister time and some much appreciated accupuncture/color puncture treatment.  That will be very nice.  She now lives in the town I lived as a small child, so it will be interesting to see a place from childhood memories from adult eyes.

Things are coming together nicely at work.  HR, my supervisor, and "the boss" are on board with the plan to bring someone in to help out temporarily while I'm gone (and for a few weeks before and after to get up to speed) That will be such a huge relief to not have to worry about what is going on work. 

On Tuesday, I'm going to go to lunch with my older daughter's grandmother (her fathers mother) to tell her about all this.  It's alot to take in I'm sure, and she hasn't been privy to any of it over the last year and half all of this has been developing.  I know she cares about me and I really don't want her feeling that I've kept this away from her, but I really haven't known what to say, afterall, I don't have breast cancer, this has just been a series of decisions I needed to make to get me to where I am now, and I now that I have a plan I feel this is a necessary thing before explaining to my 13 year old daughter what I'm about to do.  I want us adults to have a united/brave front in speaking with her about this or answering questions she's likely to have.

I Don't Have Breast Cancer!!!

This has been an interesting week.  I had my appointment with the Rheumatologist about my autoimmune disorder today.  He was soooo supportive of my decision on the mastectomy.  I really think he is one of the most attentive doctors I've ever had.  I waited over an hour to see him, but it was worth it!  He listened, and considered, and chatted, and gave excellent explanations behind every answer he gave to my questions. I wish he was my everything doctor! 

Sounds like I'm good to go on silicone.  He said there was no scientific evidence to support silicone causing or having negative impact on autoimmune disorders, and his opinion is I should weigh the other pros and cons to come to a decision I'll be happy with.  He's also not concerned about my condition causing poor healing or other complications. 

I left that appointment feeling good about my decision again.  He said at one point, "considering the huge risk you're facing, I really think you're doing the right thing" and I said "ya, I really think I may be saving my life". and He said "definitely, very well could be". I felt more confident about the surgery than I have yet!

Then the next day I went to get some lab work done, and my surgeons office called to tell me they had completed my FMLA paperwork and I could come get it.  So after my blood draw I went across the street to the surgeons office and asked for my paperwork, and the receptionist said "Oh yes, this must be for you!" then she looked at it odd, and said "whats your name?"  I told her, and she kind of shrugged, and "Hmm okay, ya this is it" and handed it to me.

I really wasn't prepared for what the surgeons office had written on the paperwork. 

Diagnosis:  Breast Cancer.

My eyes tingled a little and my throat started to close off, I turned and walked out of the office.  As I started driving back to work it really hit me, somewhat fiercely.. " I DON'T have breast cancer!!!!"  And I was lost again, what am I doing??  This is soooo drastic, It's a possibility I might not even get cancer!  might.... maybe? small chance... 

So I turned in my paperwork to my supervisor and HR, I was thinking I had already talked to them both and they didn't say anything like "OMG Amanda you have breast cancer?!?!"  So I didn't even think about it until I was leaving HR and I realized I had talked to her about my autoimmune thing but I didn't think I had talked to her about my Genetic mutation.

I stopped in to see my cousin (who I work with) a couple offices down, and told her what my concern was, I don't want to mislead people into thinking I do have breast cancer, but I'm assuming this is standard for the surgeon to write for these purposes, but I felt so bad, and I didn't want anyone feeling sorry for me, thinking I had cancer.  So she talked me through it (she's really great), and I turned around, went back into the HR office and  pointed to the my paperwork "I need you to know, I DON'T have breast cancer, I have a genetic mutation that gives me an 84% risk of getting breast cancer, and based on family history, probably in next few years, I just don't want you thinking I have breast cancer right now"  To which she responded with sympathy and compassion and asked me questions about the procedure, out of curiosity (that she quickly followed by saying I didn't have to answer, but I did).  We ended by joking about how I was a little bummed that I couldn't get giant boobs out of the deal.  She assured me that no one else would see the actual paperwork and I didn't have to tell anyone anything I didn't want to. She's good at that HR stuff.

I then made sure my supervisor knew as well, I DON'T have breast cancer!!  He understood, and It was a relief to know he actually hadn't thought I did because as soon as he saw the paperwork, he remembered me talking to him about the gene and the risk a few weeks ago.  It was nice to know that he knew I DON'T have breast cancer, but he still insisted (with some sincerity) that if there is anything I need or anything they could do to help, just to reach out. Plus, I'm much more comfortable knowing that my work knows and we're going to figure out how to cover everything while I'm gone.  I had really dreaded telling them.

Those were some dark moments for me between the time I picked up that paperwork and when I went back to clarify my situation with them. But again, at the end of the day, I'm doing the right thing. 

That's right - I DON'T have breast cancer, and I'm going to do what I need to in order to prevent it!

(and I'll just keep telling myself that...)

A New Found Appreciation

Interesting how the thought of losing something can make you appreciate it more.  Now that surgery to remove my breasts is looming, I'm finding myself appreciating them more and more each day. 

I think it has easily been 6-7 years since I went anywhere in public (other than swimming) without a bra.  In fact for the past year I've been wearing a Victoria's Secret "Miraculous" bra.  (which IS Miraculous).

There is a little bit of story to the "Miraculous" bra.   -  Except when pregnant (or afterwards trying to lose the 50+ pounds I gained each time) I've been fairly thin, and while I've always felt I had decent sized breasts, they weren't something I could flaunt around my cleavage in a low cut shirt.  They just didn't work that way.  All my bras successfully lifted and separated, and if wearing anything that wasn't a bra that provided support it did so through smooshing.

So I went out one night with a coworker and some of her lady friends, and I actually am quite sure that at least 2 of them had "enhanced boobs".  So they're wearing cute low cut things and flaunting their cleavage, and I tried to squish mine up a bit and well.... it just didn't work.  From some point that night, I just desperately wanted "cleavage".  So then the Victoria's Secret commercial came on and I just had to try it  I forked out the cash for it... and it worked.  The Miraculous bra easily took me from my natural B/C (not so full) size to a D+  looking like I'm going to bust out of my shirt!  and honestly - I LOVE it.  I really don't notice any different kind of attention.  That's not what it's about.  I just really feel there is no mistaking my femininity when I'm wearing that bra.  And having been so thin and hipless so long, I enjoy feeling confident that my form is more feminine. Even more so that I've gained a little weight now actually have a butt and hips to accompany them.

Anyway.  So yes.  I haven't gone bra-less for some time, certainly not since I was pregnant with my younger daughter.  And I'm serious - not even to the gas station to buy a last minute gallon of milk (unless it was winter and I had some reason to be completely concealed in an over sized coat or sweatshirt).  I guess I had some concern about their position.. having breast fed 2 children I felt maybe they were a bit saggy.

So recently I've spent alot of time looking at them.  It started because I was doing the visual exam, seeing how they look, do they look normal, making sure theres no weird dimpling or color changing skin.  Then additionally having seen alot of the before and after mastectomy/reconstruction pictures, I've been looking at alot of boobs!!  So just in my day to day activities,  I've also started noticing other women's boobs, what size they are, what shape they are.  LOTS of women walk around without bras!!!

So the other day I got home and changed out of my miraculous bra into just a tank top, then threw on a thin t-shirt over it since we had my sister in-laws coming over.  It was just too hot for my bra, particularly the Miraculous bra.  It's a 100 degrees out,  and after working all day, the last thing I want to do is sit around with sweaty boobs.  So when my sister in-law asked me to go to the store with her, I checked myself out in the mirror and said "think I'm okay going without a bra?" to which she said "ya" (of course!! she's not wearing a bra either!!!)  So off I go to the store bra-less !  And yes, I did feel a little self conscious, but when I was there, I kept looking around and noticing other women and their boobs, and realized even bra-less my boobs area actually pretty okay looking.

I went to the gas station last night without a bra.  Today I went to the car wash without a bra.  I feel great.  I'm probably still going to wear my bra to work.  In fact, I still can't imagine not doing so.  But the point is I'm really liking my boobs right now. 

I kind of wish I could just resent them for what they're putting me through....  instead I find myself enjoying them, admiring them, hoping my new boobs will come close to looking this good.  I'm not fooling myself.  I originally had some hope of getting them to be the size they are in the Miraculous bra, but I've pretty much been assured that is not going to happen.  I know I'm not "getting a boob job"    It's not like with this surgery I'm going to go in to the hospital and come out with beautiful new breasts.  It's something else entirely.  I'm not sure I'm ready to use the words that will adequately describe what they will be (or won't be).

For the next 72 days, I'll just love my breasts for what they are.

Swinging back the other way!

So right now I'm feeling good about my decision again.  I kind of feel like a swinging pendulum (on a clock).  Its not that I feel completely different on either side.  I still have the same thoughts and concerns, it's just a matter of which are stronger feelings at any given point in time.

I added a countdown clock to the blog.  I was feeling like October 4th is really close, but really to see when I added the countdown it's still 80 days away, made me feel a little better!!  Plus when I called to ask the plastic surgeons office a question, I told the lady on the phone who I was and she said, "oh yes, you're the one scheduled way out there".... yes I guess I am? I also got a call from the pre-op scheduler saying it's too early to actually schedule the hospital pre-op appointments so she'll be calling me back in a few weeks.

I also got a call from the breast surgeon on Wednesday.  I really love that she calls me directly and speaks to me personally rather than having a nurse or assistant call.  She was just wanting me schedule my MRI for September instead of July so that it is closer to the time of surgery.  She indicated that this way if the MRI was completely clear she'd be okay with not doing the sentinel node biopsy if I didn't want to.  I've already decided to go ahead and do it though, so that doesn't really make a difference.  But this will also provide an opportunity to meet with her again a week prior to surgery to review the MRI results and ask any other questions I have.  I feel like I should have a lot of questions still, but I don't really know what they are.  I'm kind of feeling like between my appointment with her the last week of September and my pre-op appointment with the plastic surgeon September 19th, I should have all my questions answered. 

The breast surgeon also offered to fill out my FMLA paperwork if I got the recommendation for recovery time from the plastic surgeon.  They're going to recommend up to 6 weeks.  I hope to get that all filled out and submitted by the end of this month, so we can start planning at work what they're going to do while I'm gone.  I'm hoping we can get my recently "reduced" employee to come in at least on a temporary basis since she's already trained (and I really wish she still worked with us anyway).  On a monthly delivery system like we have that means they'll basically have to go through one full cycle, prepare and start the next and be prepared for the third before I get back, if I'm gone for the full 6 weeks.  I'm fairly confident though that If we set things In place like I would recommend they would be okay.  Plus this should be around the time of a new software implementation that should (in theory) make some of that easier.

I Have a Date

I heard back from the plastic surgeons office on Friday regarding a date for the surgery.  She said the two surgeons communicated back and forth and came up with the date of October 4th.  I was told to look at things over the weekend and then confirm on Monday.  No real reason that won't work, so I'll be confirming on Monday.  Tuesday October 4th! 

Honestly, I'm a little freaked out now.  I don't know if it's that I was thinking about it a little less for the last week or two, or if it's that having a date makes it more real.  That is probably it.  Having a date set means there are people actually making preparations to do this (other than me).  That does make it real.

I'm having a hard time sleeping because I'm debating with myself again.  Am I taking too drastic a step?  No, I don't want to take my chances!  Did I pick a plastic surgeon too quickly?  He was highly recommended and seemed straight forward and honest.  Could I get a difference answer from a different surgeon?  Probably, but would they be just telling me what I want to hear?   Maybe, you just don't know!  I'm a crazy person.  At least I'm not having these debates out loud in the middle of the grocery store.

Heard back - Kind of..

So I know I said I wasn't really expecting to hear back anything from my ovarian cancer screening.  But I had actually come to expect a call to just say "your results came back normal and your cyst is nothing to worry about it."  So when almost a week later I hadn't heard anything, I started running crazy scenarios through my head (I am prone to this...) like WHAT IF there was something to tell me and all of the doctors who got the report thought another doctor was going to call me, and no one called me and I'm losing precious time to be doing something...

So yesterday I called to check and left a message with the doctor's nurse.  Still hadn't heard back by this afternoon, so I called again and spoke with the nurse who apologized and said it is now on the doctors computer for her to review, but she went ahead and told me that my CA125 was fine.  I asked for the number and she said it was 13.  Under 35 is considered normal.  So thats good!  She also said I "have a TINY (???) cyst on my right ovary and that is normal".  So if the doctor has anything more to tell me, she'll give me a call, but "looks good!"

Side note... I got my annual pap test result in the mail.  Check it out.  Seriously.. I can't imagine getting this in the mail with the box next to "Abnormal" checked.  Would I then have some questions or concerns? YA I think so!!  I sure hope I'd get those results in some way other than a check box in the mail. 

Ovarian Cancer Screening

So I had my first ovarian cancer screening on thursday.  It consisted of a blood draw and pelvic ultrasound.

I think it's sign that I've spent way too much time at the hospital when the phlebotomist passes me in the hall and says "Hey, haven't seen you in awhile".  Then when I'm back getting my blood drawn he says "I know you from somewhere other than here don't I?"..... No.  This is it.  I've just had my blood drawn by YOU like 10 time times in the last 6 months.  The last time I was in, he asked me if I worked that the hospital, because he was just sure he saw me regularly outside of drawing my blood.

So the blood draw this time is for a CA-125 test.  Which from my understanding CA stands for Cancer Antigen and this particular one is found in higher concentrations when ovarian cancer is present..  So a low number is good here.  When/If I found out the number I'll post again on that.

The ultrasound was pretty much torture.  They told me I had to drink 32 oz of water between 10 and 1030.  So I did, and at 10:30 I didn't think that was too bad, but then at 11:30 when I showed up for my appointment, and had to wait for the phlebotomist and then had to wait for the ultrasound, I was very anxious to get to go to the bathroom.  Then I was called back for ultrasound, and she started with the external which was pushing on my stomach for about 30 minutes.  She had a hard time finding my left ovary, so she was pushing really hard!  it was not pleasant.

Finally she finished with the external and then told me for the internal one I needed my bladder as empty as possible.  (must it really be so extreme??) so she said I should go to the bathroom, then walk around a few minutes, then go again.  SO I did as she suggested and she insisted on a quick external  ultrasound again to ensure I was empty enough.  I did a "good job", so we proceded with the internal ultrasound.

I'm not going to go into alot of detail on the internal ultrasound.  It is what it is.  It just went on alot longer than I anticipated.  Not looking forward to do this again in 6 months.

As she was going along and I assumed she was close to being done (which she was not) I asked if she could show me what my ovaries looked like before she finished.  And she said "okay... well let me just tell you then, you do have a large cyst on your right ovary... it's about 3 1/2 cm.. so I'll show you that and then I'll show you your left one when I get there"  (yes she hadn't even made it to the left at the time I thought she should be finished).  So atleast from the angle she showed me, we couldn't even see the ovary.  It was blocked by the cyst.  Which on the screen looked just like a big black filled circle.

She didn't go into detail about why my left ovary was so difficult to find.  I got confused and asked if it was because of the cyst, and she clarified, no it was the right that had the cyst, and it was EASY to find because of the cyst.  She showed me a picture of my left ovary and commented how they usually look like a chocolate chip cookie, and that mine is a shaped a little different than normal.  Rather than being round, mine is shaped kind of like a peanut shell.  Which I don't know.. seems like from looking at pictures online anyway it's pretty normal to not be exactly round...



She couldn't really tell me anything because she's not the expert.  I'll just have to wait for the report from the radiologist to get to my doctor and if they feel the need to call me, they will.  I didn't get a call Friday, so I'm kind of thinking I'm in the clear.  We'll see Monday, I guess.  But I'm really thinking that a strangely shaped ovary, and even a 3 1/2 cm cyst is somewhere in the realm of normal... So I'm not really expecting a call from doctor, unless they just call to say it looks okay, or even "hey you have a cyst that we'll just see whether its still there or not in 6 months when you go through this again".

Annual mammogram is NOTHING compared to this!  I'd rather have a mammogram 4 times a year than this twice a year.  But this isn't something I get to negotiate on.  No fair trades here.   Well, oh well.. it is what it is.  I'm screening for cancer.  Hopefully it will never be an issue, and if it is, hopefully I'm doing what it takes to save my life.  Thats what this is all about.  That makes it worth it.

FORCE | Previvors & Risk Reducing Surgery

The link below is to the FORCE website ("Facing Our Risk of Cancer Empowered"), which you may hear me talk about from time to time. This link explains the term "Previvor"
FORCE Previvors & Survivors : Cancer Previvors

Here is another link - what FORCE has to say about Risk Reducing Surgery.
FORCE Publications: Newsletter: Spring 2011: Risk-reducing Surgery

As I was exploring the site, I just found that they have a Boise group! They didn't last time I checked, so I'm excited to hear about what this will mean! Maybe there will be a group of people going through what I'm going through that I can meet with and talk to in person!

Gynecologic Oncologist - say that 10 times fast.

The other day at work my coworker/friend asked me "which appointment is this" and I said "the gynecologic oncologist" and she kind of laughed and said "you're getting good at saying those words". 

Yes I am!  it's kind of a funny coincidence, a nursing school sometimes prints to a our printer and a quiz had popped out.  She picked it up and said "what is the surgical removal of the ovaries called".  and I said (without hesitation)  "oopherectomy"  and she said "hmm no I don't see that..."  and I said "no let me see" and sure enough it was there on the multiple choice selections, and I pointed it out.   Who knows that??  besides medical professionals and those who have had the procedure done or are considering it.

So I had my appointment with the gynecologic oncologist on Wednesday.  Let me tell you.. I don't like annual exams!  This doctor though was very calm and actually showed me the "tools" which I've never actually seen before... I told her so, and she said she believes in her patients knowing what it is that she's doing to them.  Yes.... I suppose that is preferable.

Anyway, prior to the actual exam, we had a long discussion.. My husband was there.  I really wanted him to hear the information from the doctor.  It seems like that was helpful when he went to see the surgeons with me.  He didn't go with to the initial high risk clinic visit, not that he didn't want to, but I think more because I downplayed it and didn't place the importance of it higher over his work, and said my mom could go, which she did, and that was good, but in retrospect it would have been good for him to hear what the surgeon and oncologist had to say at my first clinic visit.  that's really the basis of information on what thoughts and decisions I've been developing over the past year.  Hearing it from the "experts" can be enlightening.

SO the gynecologic oncologist started out by asking what my understanding was about what this appointment was for.  I told her that my understanding was that I wanted to know more about my risk, my preventative and/or screening options, and to get an exam done.

I guess this was the right answer.  She said that she had reviewed my file, as far as the notes from the oncologist, my genetic results, and the notes from the original referring doctor.  She said that in some of the oncologists notes he had indicated I was BRCA1 positive, when in fact I'm BRCA2 positive.. so she wanted to confirm with me what it was, and said she'd send him a note to clarify. 

So she said my ovarian cancer risk is lower (with BRCA2 than BRCA1) so i have somewhere between a 12% and 27% risk of developing ovarian cancer ( which also coincides with my results report). She said the typical risk is somewhere around 1%, so best case scenario, I am more than 10 times more likely than "typical" to develop ovarian cancer.  Scary.  and "worst case" that is more than 1 in 4!  (I try not to get caught up in the numbers, but it is hard sometimes..)  I guess the real worst case is that I am the "1" in the 1 in 4.  Which we will just not let be the case! right?  SO She explained the options of having the ovaries and fallopian tubes removed vs that plus the uterus.   the relating recovery times of the surgeries, and we talked about hormone replacement options.

One of the big concerns we have about this is hormonal, will it change me?  will I become depressed?  Will I lose my sex drive entirely?  will I become a completely different person??

She indicated that she felt alot of the cognitive "changes" with the loss of hormones were more related to the continual loss of sleep due to night sweats than anything else.  She seemed to imply that if that was under control it might not be to much of a problem, as far as sex goes, she does know that can in some cases be an issue, but there is something like small amounts of additional testosterone one could take to increase libido.

Her overall recommendation (as I interpreted it) was that if I was DONE having children, It is definitely something I could/should consider doing.  Then the question would be to keep or lose the uterus?  I lean towards getting rid of it.  I'm not sure what purpose it serves other than bearing children, and If I'm not doing that - why keep it?  I've seen people comment elsewhere - "if we removed everything that at some point could hurt or kill us, we'd have nothing left".  This is true.  But if something is more likely to hurt you than it is do any good, and you have a reasonable reason and the means to remove it and it won't cause harm - why not?

I know my odds of getting ovarian cancer are far less than my odds of getting breast cancer, but the problem with ovarian cancer is that it is "sneaky".  the doctor said that surveillance hasn't been proven as an effective way to detect ovarian cancer any "earlier".  That even with regular surveillance,75-80 of the time ovarian cancer is found it is in stage 3 or 4.  That is scary!  Surveillance entails a pelvic  ultrasound and CA125 blood test every 6 months.  Seems like with regular screening like that it should be caught earlier!!  but I guess not...?

I asked her too if because my risk is lower than that of those who BRCA1 positive, is preventative surgery still recommended,  She said yes.  It is very much recommended for those 35 or older, or when one is done child bearing.  So now I have the question of when.  I really feel I don't want any more children, so am I ready to do it now? anytime?  or would I rather wait.  As much as I am convinced I don't want anymore children, how will I feel about the inability to have have any?  If I were to decide to do it sooner than later, can I do it the same time as the mastectomy?  is that too much for my body to handle?  or is it better to just do one MAJOR surgery event than 2 major surgeries separated in time by a year or two?   Hmmm

Side note - her office is in the basement of the cancer center.  in the exam room the overhead fluorescent lights were covered by painting of the sky with a flowering tree branch through it.  To bring life and light to this basement.  I think this is a nice gesture. 

For now I'm starting on surveillance.  Next week I'll have my ultrasound and blood test. and will plan to do so every 6 months until I decide to do the surgery.

Now lets see my medical schedule:

Annually:

MRI
Mammogram
Visit with high risk clinic
Pelvic Exam
PAP

Twice a Year:

Physical Breast Exam
Pelvic ultrasound
blood test

Plus who knows what with my crazy autoimmune thing... I'm just going to really concentrate on making that just go away.  Seems like I should have a little more control over my immune function than my genetics, so I'll start there.

The Doctors Talked

I got a call from the breast surgeon the day before left on vacation.  She said she talked with the rheumatologist and he said he plans to have me on plaquinil for a long time, but he feels it is such a mild immunosuppresant that he thinks we are okay to move ahead with the surgery if things are going well at my follow up appointment in July, but if the plaquinil is not working well or if it is not well tolerated, he would want to consider changing to a stronger medication.  If that were the case he would want us to get the surgery taken care of before switching the medication. 

The breast surgeon also discussed all this with the plastic surgeon and determined that if I want to move forward, they will coordinate with each other on getting some dates that will work for both of them for me to choose from.

I feel like this is good news.  Hopefully my immune system will just be normal/controlled at least long enough for me to get this taken care of!

Next week I have my appointment with the gynecologic oncologist.  Hopefully I'll get some good information about my ovaries and insight as to what that surgery would entail.

Consumed

I am completely by consumed by this.  For over a year now, since finding about my BRCA results, it's been on my mind all the time!  It's getting worse.  In the first few months after the initial coming to terms with the results, I could go a couple days, maybe more, without thinking about it.  But more recently, for the last 6 months or so, it's daily, if not multiple times per day. 

What am I thinking about?  Cancer.  Getting Cancer.  Not getting cancer.  Wigs.  Mastectomy.  Scars.  Implants.  Lifting restrictions.  Pain medication.  The passing on of my genetics.  My daughters.  Breast feeding.  Nipples.  Ovaries.  Exanders.  Hospitals.  Hospital food.  Hospital Beds. Mastectomy bras.  Surgeons.  Drain tubes.  Will I be okay with my new boobs?  Will my husband be okay with my new boobs?  If they turn out terrible will I find enough comfort in my reduced risk to make up for it? 

I would compare this to pregnancy.  That living being inside of you is hard to forget about.  Moving around with it's little heart beating.  Kicking at you from the inside.  The little hiccups.  I felt kind of that way about my boobs right now..and to some degree my ovaries.  Except with far less fondness...they're not going to come out a cute precious little baby.... hopefully they'll just come out and let me stop thinking about them!  Hopefully I'll get used to their new feel and get used to seeing the scars, and I'm sure it will evoke some thoughts or feelings from time to time, but hopefully when the timebomb is gone, it will no longer consume me.

Out in the Open?

I am unsure how open I want to be with this blog.  There are still many people I haven't informed of my situation, and some people I'm not sure if I want them to know.  I know that by putting this out on the internet without restrictions, and telling anyone about it, I'm making it "public" but that is different than posting it on my facebook where all my friends, coworkers, and family will be notified of it's exsistance.  

I have 2 daughters.  My first daughter is from a prior marriage. My biggest concern is my older daughter finding out this information and what that will be like for her, trying to understand what this means for her.  I haven't shared any of this with her, and I'm not sure how to (or when to).  My second concern is her grandmother or other members of that side of her family finding out and becoming concerned about her genetic situation so many years before we can even find out.

I feel like I definitely need to be the one to have this conversation with my daughter and I want it to be on my terms, in my own time.  So I suppose when the time comes that I'm ready to tell her about this, that will be when I'll post this more openly.  In the mean time, I hope that any one reading this who knows someone who knows someone (or is someone) who finds any benefit in reading this, will share with others.  I'm just not ready to post it on facebook.

Surgeons

I've now had my initial meeting with both the breast surgeon and the plastic surgeon to consult about the mastectomy and reconstruction.

As advised, I met with the plastic surgeon first.  His office had by far the most fashionable "gowns" to wear.  They were blue toga looking things with a gold clasp at the shoulder, quite comfortable as well.  The nurse then took my blood pressure and oxygen and we had a Q&A session.  I didn't really know what questions to ask her verus the surgon, so I just saved most of them.  She asked me about my autoimmune disorder.  I explained that it is just something that came on a few months ago - the end of January, and we had a biopsy and determined it was unknown autoimmune condition affecting my lungs.  She then dropped the first bomb on me - apparently I may not be able to have silicone implants as an option if I have an autoimmune disorder.  This raised a few questions that she didn't have the answers for.  I had come into this thinking it was most likely I would want silicone.

Then we had a photo shoot!  She explained that they used the pictures to compare before and after and that if they had my permission and (IF?) he liked the outcome he may want to put them on the webpage.She had me remove my robe and stand in front of the blue wall. She took pictures from various angles and then had me put my robe back on and wait for the surgeon - (I wonder if they would let me have digital copy of the pictures...)

The plastic surgeon then came in and examined me, and we discussed what my expectations were, that I wanted nipple sparing with immediate reconstruction with expanders.  He said based on my breast shape that I would be good candidate for nipple sparing.  He did indicate though because of the thinness of my skin, it would be unlikely that I could get much larger than I am now (and said unfortunately that isn't something I can fix with icecream...bummer)  We discussed where the incision would be - I asked about having the only incision surounding my nipple and he ruled that out because it would be too difficult for him to get the alloderm and the expander in.  I asked about having the incision under the breast (in the crease underneath) and he said that he would strongly advise against that in my case with the distance from there to the bloodsupply..  So that is a bummer as well!!  He invisioned an incision out a little on each side and under my nipple..

So I asked him for more clarification on the silicone/autoimmune disorder issue, and he said that basically that after the FDA had disallowed them and then let them use them again, they had placed more constraints on their use, and so in my case he feels that if I am well informed and have the support of my rheumatogolist I may still be able to get them... so we'll see.  He was also concerned about the autoimmune disorder and the medication I'm on being problematic for reconstructive surgery.  So he said I need to be in optimal health and have my condition well controlled.   This was all stuff I hadn't considered.  I left the appointment feeling some level of distress.  After all I don't know anything about this condition!  I know I'm feeling okay now.. but the rheumatologist said this could take anywhere from 6 months to 2 years to resolve entirely - I can't wait 2 years!!!!  I'll be almost 32 by then. 

The next morning I met with the breast surgeon.  They had me wear a short pink CAPE with a snap neck closure.  Then the surgeon came in and she asked what prompted this visit - I explained I had been thinking about it since the fall and was going to indicate this at the high risk clinic but when I told the coordinator, she said there was no point and recommended I just move forward with the consultation outside of the clinic. (to avoid an extra appointment).  This satisfied her.  After ANOTHER exam - we discussed her thoughts on things.  I explained what the plastic surgeon had said.  It was apparently she was familiary with him and his work and she was comfortable with nipple sparing if he was.  She also indicated that recent research has shown little difference in the risk between nipple sparing and non.  I expressed my concern about needing to wait because of the autoimmune disorder, and she was on the same page as me - basically if the rheumatologist thought this would be taken care of in a few months then we should wait, but if this is long term or will potentially go on indefinitely, then she thinks it's in my best interest to act sooner than later.  Based on the early onset history, she agrees that waiting 2 years may be too long, and if we needed to work around the condition/medication we could figure something out in conjunction with the recommendations of the rheumatologist.  She also mentioned that she would recommend a sentinal node biopsy that would be done at the time of surgery and probably require additional incision in my armpit.  There can sometimes be cancer hanging out in the lymph nodes when it's not present in the breast.  Apparently they take up to 3 lymph nodes in this procedure and biopsy them there in the operating room, then if they happen to find cancer in them they'll take them all out.  I'm going to research this more, but it seems like something we should do!

So I was very happy after I met with her - she was reassuring, and she said she would talk to "Mark".. she's apparently on first name basis with the plastic surgeon.  They would discuss what their concerns would be with my autoimmune disorder, and then she would call the rheumatologist to discuss.   She also thought it wouldn't be a problem to schedule the surgery for the second half of September sometime.  She and "Mark" both have Tuesday as their surgery day so it shouldn't be a challenge for them to coordinate being there at the same time.  (So I guess it will be a Tuesday).  Looking like the 27th, since my parents will be out of town until the 22nd...

So my current plan of action is to have my follow up appointment as scheduled with my rheumatologist in July, as well as have my screening MRI.  then see where we're at and if we're all on board to move forward with scheduling the surgery.

With all that said - after my thorough exam and mammogram on Monday, exam on Thursday, and exam on Friday - my boobs hurt.

Mammograms

As of Monday - "Mammogram Monday" i have had 4 of these!  I don't find them to be extremely unpleasant... Sure, they're not fun, and they're uncomfortable, and they leave me a *little* sore for a couple hours.  But I think there is alot of hype about how unpleasant they are, and I worry that some people may put off getting them because they hear how terrible it is.  I've now heard it both ways "the bigger they are, the more it hurts" and "the smaller they are, the more it hurts".  Maybe next time I will ask the tech "who complains more, large breasted women, or small breasted women?".

My first one was back in 2008, when I had my first mysterious lump.  I don't remember it much.  I think because I was so concerned about the lump.  I just remember it being uncomfortable, but not a big deal.  The mammogram was inconclusive.  They did an ultrasound and determined it was something to be removed/biopsied.  I was then told by that surgeon that until I'm substantially older I shouldn't get mammograms because my breast tissue is too dense for them to be very useful, and with that said they may subject me needlessly to radiation, so I should "opt for ultrasounds".  I brought this up after my BRCA test result in the planning of my surveilance, and they said the benefits outway the risks.... okay.

The second one was FINE.  This was after my BRCA result and part of my surveillance. I recall vividly that I felt this one was much better than my first.  

The third one was the worst and I imagine it would rank up there with the worst for many people.  Hopefully it was the worst I'll have.  It was after a core needle biopsy, and they wanted to make sure they got the marker in.  So after they stuck a giant needle in my breast to remove little pieces of (another) fibroadenoma.  They stick my numb boob in the contraption and squeeze it this way and that!!  I bled all over the place and the tech got all nervous that I was going to pass out.  She made me sit down and rushed off to get me water and cool washcloth.  I think she was more disturbed than I was.  I can handle my blood, but regardless... that was definitely unpleasant.

Both of my screening mammograms have started out with confusion about my doctors orders because when you're under 30 you have to have specific doctor's orders to get them done, and for whatever reason they never seem to make it to my file in a place the nurse can find them prior to me getting there.   They do an extremely thorough breast exam and tell me what they're doing and what they're feeling or refeeling, sometimes having me feel what they're feeling.  They've been very interested in the BRCA result and what I was told by the genetic counselor.  Both of these nurses (and now I find myself wondering if it was possibly the same person)  were very sweet and sensitive to my feelings, they wanted to encourage the self exam and teach me how, but understood why I "do it halfway" (because I always feel things that I don't know if they're normal and I assume they are, so I don't know exactly what to look for). 

Then I go in for the actual mammogram.  This time I took note that it wasn't so much the squeezing of the boob that was uncomfortable but the strange position I was placed in and the squareness of the contraption in my arm pit, in my breast/underarm area which was somewhat tender after the thorough exam.  I was somewhat amused by the way the tech moved me and positioned me like an impossibly flexible mannequin, then told me to "smile pretty".

Anyway, It is certainly not my favorite thing in the world, I would put it in the realm of the other annual exam us women need to get - fun? NO.  A good idea?  DEFINITELY. 

Starting off my blog

I feel like I need to write a book to provide background to where I am now. This blog really should have started over a year ago when I first started down the road of genetic testing.  It all happened fairly quickly.  My cousin passed away from breast cancer at the age of 37.  I thought it was too much of coincidence that my Aunt had also died from Breast Cancer at the same age (this was not my cousin's mother, but her aunt as well - my dad's sister.) 

I had a lump in my left breast a few years ago and ended up having it removed - it was a fibroadenoma (benign).  And when I was there I talked to a few people about whether I would be considered high risk because of the diagnosis of my Aunt and my Cousin on my Dad's side.  I was actually told by someone at that point that there was no evidence that breast cancer would be hereditary through a paternal link. Well geez... that person was WRONG. 

When we found out about my uncle's positive test result after my cousin passed away, I talked to my ob-gyn about my risk, and asked if she could refer me for genetic counseling.  She thought it was warranted and made the referral.  It seemed like an obvious thing to do.  I'm a person that likes to know.  If there is something to know.. I want to know it.  I can't say I haven't regretted that decision a couple times since then.

At the time my chances were only 25% because my dad hadn't been tested.  I thought I had prepared myself mentally for the news either way, when I sat there with my husband waiting to recieve the results.  As soon as she entered the room, she sat down and cut to the point.  "the result was positive".  I felt a little crushed inside.  I teared up.  There wasn't alot to say at that point, since she had been so thorough in the initial counseling.  I had tested positive for a BRCA2 mutation, increasing my risk of breast cancer to 84%.  She reiterated a few things about options, gave me some pamphlets and said the patient navigator at the high risk breast clinic would be working with me to get set up with my first appointment.  She also put her hand on mine and said "This is NOT a death sentence".

At the high risk breast clinic, I met a surgeon to discuss my surgical options, he kind of casually laid the options out there, and they seemed so drastic, I don't think I paid alot of attention, because I really wasn't ready for those kinds of steps at that point.  I then met with the oncologist, who gave me all kinds of interesting information.  For instance, he confirmed that it would be likely based on family history that my specific genetic mutation would indicate an early onset - since both my Aunt and Cousin developed breast cancer in their early 30's, it was fairly likely I would as well.  He said I had a few things working in my favor though, and while he would not encourage anyone to do these things, it could possibly have the effect of delaying onset.  First I had my first child VERY young, and when you have your first child you stop developing ducts in your breasts, so I have fewer ducts than most people.  Plus I smoked for 10 years, and smoking reduces your estrogen.  Of course neither of these things should be recommended because of their other negative impacts. He did also say that I absolutely needed to quit smoking, because in a nonsmoker in my situation when we can catch the cancer early because of the level of surveilance I'll have, the odds of survival are 90%, however in a current smoker, that drops to 50%.  That's all I needed (and a medicinal aid).  I quit. almost a year ago now.

I started out feeling the way I wanted to go was surveillance.  Even when my first MRI resulted in a callback and further testing, and core needle biopsy, I reminded myself that I knew this is what i was in store for with surveilance.  I might have a biopsy every time I have an MRI.  I thought I was prepared for that.  I felt like if I were to get cancer I would go through treatment, have a mastectomy at that point, and he'd catch it so early, I'd be okay, and never have to worry about it again. 

I don't remember now what changed my mind, but sometime in the fall I really started obsessing over it.  I started drawing it out something like this.. but I broke it down in different ways.. I'll just share this example of one, it makes it pretty obvious

So the way I looked at this was that I had 2 options - 2 Rooms I could go into, the first was "Surveillance", the second was a prophylactic bilateral mastectomy.  After obsessing over these drawings for a couple weeks and talking about it outloud to a couple people I made my choice. I would do just about whatever necessary to get into that second room.

Then it was just one thing after another, with the holidays and birthdays, and crazy stuff at work and what not, then I had a weird health issue with my lungs, pleural effusion, chest pain, having to have a lung biopsy, and being diagnosed with "an unidentified autoimmune disorder affecting the lining of my lungs".  GREAT. 

So I'm mostly better from that episode now, and I'm moving forward.  So here I am a little over a year since my first appointment with the high risk breast clinic, and on Thursday (in 2 days) I have my appointment with a plastic surgeon, to be followed by an appointment on Friday with a general surgeon for consultation on my mastectomy.

I wanted to start this blog so I could get out some of what I have in my head, and maybe I'll share my experiences, and others will read and not feel so alone.  I've found it tremendously helpful to read the blogs of others who have "been there, done that". as well as those who are currently exploring their options and making decisions like I am.