Geez, what now??

I've mentioned my autoimmune disorder in previous posts, now that has suddenly become my health focus.  My inflammation levels are elevated (according to my blood tests).  We still don't know what is causing it, but now I have other highly unpleasant symptoms in addition to the fatigue and achiness... lets just say its unpleasant and related to my bathroom habits.  My rheumatologist referred me to a gastroentonologist, and based on my file, they scheduled me for a colonoscopy.... yippee.  Seriously.. I'm 30.  I don't think this is right, but they're wanting to rule out things like crohns disease.  

Even worse, the research I've been doing leads me to the conclusion that prolonged/chronic inflammation can be one of those cancer causing triggers.

So lets see, I'll make up a visual example of the scenario at hand... ok if you look at my hand like it would turn into cancer if I lost all my fingers (suddenly my hand would grow and morph into something deadly and uncontrolled trying to consume my body and kill me) and the fingers are the only thing keeping it in check...  So automatically I have ATLEAST a couple fingers gone because of the gene, next I have a finger knocked out due to environmental factors, and another finger or two due to past lifestyle choices (smoking, drinking, poor diet), then inflammation sets in and breaks off the last finger.  Now I'm not sure if the gene got rid some fingers to start with, or if it just made it easier for them all to fall off... either way out come is the same.

I'm trying not to be fearful.  It's hard when I feel so terribly and I don't understand why.  Just like when I had the lung issue last year, I find myself wondering if its possible that somehow I developed some aggressive ovarian cancer that has metastasized to my colon.  I imagine them calling me in after the colonoscopy and saying they found cancer, and they were surprised because I'm so young, but then they realize its not colon cancer, it's ovarian cancer!   I know I can't let myself get caught up in that kind of thinking.  Its just hard to not go there at all.

I feel like a freak.  I'm scared about this crazy stuff.  And then I have all these other issues.  I feel so bad for my family some days, particularly my husband.  What did he get himself into?  

Today when I was called by the nurse to get things in line for yet another procedure, she asks me about if i've had any surgeries... I list them all off, and theres part of me thats disgusted hearing it all.  then what medications I'm taking.. I list them off, and she asks why I'm taking them, and I have to explain, and I just sound so weak.  She asks about my family history of cancer, And its the C word.. and I just want to run away, but I have to stay on the phone, and I say well I tested positive for the BRCA gene mutation.... thats why I had the mastectomy.  "Oh," she says.. and I know she doesn't get it.  Not like I should expect her to.  So I tell her theres lots of cancer in my family.  and she says "ok, but do you have any first degree relatives, with um, the same.... um situation...?" well I got the gene from my dad, he's had skin cancer.  At this point I just want off the phone so bad... I'm so tired and sick of it all.  She asks if I have any mobility issues, and I don't know what the procedure entails, so I tell her I have temporary implants in and they're not comfortable for me to lay on my stomach... and they have magnetic ports.   "That shouldn't be a problem... but I'll make a note of it".


((sigh))

Now I have to wait 3 weeks for the colonoscopy.  Who would ever be eager to have a colonoscopy???? 

Me.
And NOT ME!!  It's just about the last thing in the world I want to do right now, but I can't stand the not knowing what is going on inside my body.

I'll get through this of course.  I'm just feeling pretty down right now.

Dear Breasts,

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

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

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

Goodbye for now, until we meet again.

With Love,

Amanda

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!

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).

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...)

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.

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.