Natural Sugar isn't white??

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

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

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

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

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

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

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

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

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

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...)

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.