9. trying to stay positive

i am trying to look at this delay in surgery as positive (easier said than done)...and decided to make a list to help me get through.

- i can work a bit longer and save more money for when i am off
- the weather will be better in april which makes for safer driving to appointments for fills and follow-up appointments (2 hours one way...)
- more time to clean and prepare
- i got my referral for physio today for my shoulder (injury from the assault) and should be able to get in in the next few weeks to have it treated
- since i will be getting physio i can get some tips for exercises that i can do post-mastectomy
- it will help the people at work who would like time off for march break
- might find out about our families brca results before surgery
- might be able to connect with someone who i trust to take care of my pets while i am away for surgery (i have 3 cats, 1 of them who has special needs and needs insulin shots twice a day)

um...that's all i can think of...i am trying to focus on these positives instead of the disappointment...i'm honestly having a down day and feel really weepy. i think i will have a good cry later when i am completely done work for the day...i am babysitting soon and want to keep it together till i am done.

8. and this is why it is so hard to cope

my surgery just got bumped to april. i have been making all these preparations the past few days...cleaning over haul...laundry...bought new bedding, jammies, easy to put on shirts...had my 4 week count down/check list on the go...and now i will have to start it all over again.

i am soooo frustrated and heart broken right now. i was actually calm, cool, and collected going in for march 15th, but now with this delay i am completely thrown for a loop. my stomach is in knots. i think i may cry:(

7. beginnings - epic

i am sure some of you have stumbled upon my blog by mistake and are wondering how i could come to a decision such as this: the removal of my breasts.

well first off, i want to make it clear that my breasts ARE NOT healthy.

it all started in the beginning of november 2007. i was just chilling at the computer and for some reason...maybe just a comfort thing - i cupped my left breast and there it was...a lump. and not even a small one. it was the size of a pea.

my heart started to race and i got sweaty. i started searching the internet right away for what it could be. immediately i was struck with the fear that it might be cancer. i think my research that night ultimately brought me to the YSC - Young Survivors Coalition. i joined their forum and started posting my concerns.

i was stuck with the dilemma that i did not have a family doctor at the time. it took me 3 weeks to find a doctor that would except me for "an interview." fortunately during this interview i told the doctor why i was really there and he examined me...and could palpate the mass as well. he wrote me a script for a mammogram and a breast ultrasound (u/s from here on out).

if memory serves me correctly, i went immediately for the mammo and u/s but when i got to the imaging center the girl behind the counter sort of laughed at me and said i was too young for a mammogram. she called up to the doctor and asked if it was necessary for me to have it? i don't know why she persuaded him to say no, but i did not have a mammo that day. i did however have the u/s.

i anxiously waited about 2 weeks to get the radiology report for the u/s. in that time i have found other lumps in both of my breasts. needless to say i was freaking out. the doctor took my concerns seriously...and having learned to advocate for myself from the YSC boards i requested a biopsy. he then made a referral to a breast surgeon (who i will refer to as dr. l).

i waited 2 months to get in to see dr. l. in the mean time i was doing tons of research and i pretty much convinced myself i had breast cancer. this was not completely unwarranted as my mother was diagnosed with breast cancer when she was 35 and died of it when she was 38. upon further investigation, i also found that there were 2 more female breast cancer diagnoses under the age of 60. a great aunt had breast cancer at 60 and fortunately survived after a mastectomy but died of melanoma 15 years later...and a great, great aunt who also had breast cancer and died of it at the age of 44. (but more on family history in another post.)

so...jan. 2008...i meet with dr. l. i was expecting to be going for a biopsy...but was totally let down when he said he wanted to wait till may 2008 to do anything. he wrote me a new script saying that i can, and will have a mammogram in may and that he will also do a follow up u/s for comparative purposes. he also wrote me a script for primrose oil!?!?!

i left feeling completely devastated and worried that i had cancer and that we were NOT going to do anything about it. i felt like i was a failure by not being able to advocate for myself but then spend the next 4 months being pro-active. i got a doctors referral to a genetics counselor and start gathering my family history and retrieving my mothers medical records.

i tried my best to put the "cancer" stuff out of my head and go about regular life. then may 2008 finally came...and it being my first mammogram-i was pretty nervous. i guess i was so nervous that i some how got my appt. date wrong and showed up a week too early. doi! fortunately they took me that day anyways.

and yes...the mammogram experience is brutal...and i think that technician was rougher than most (i have learned since from having other technicians that don't seem to cause me as much pain during mammography). also, i am very small breasted...like so small, i have never come across anyone else who has the same or smaller breasts than me...so i am sure this contributed to the pain factor...

after the mammogram the technician said to me "don't be alarmed if we call you back for more slides in the next few days." and there was the first red flag. then she walked me down to have the u/s. and then the next red flag was the technician spending about 25 minutes u/s-ing my breasts (as opposed to 10 minutes for my first one in nov. 07).

i don't know why...but i sort of felt better for a bit after i left the imaging center. like i had been taken care of and taken seriously. i was actually totally surprised when I DID GET THAT PHONE CALL to come back in for more mammogram images. they also told me on the phone that i should be prepared for the possibility that i could be having a biopsy the same day and to bring a friend.

i was a mess. and it is safe to say from that point on: may 2008-present i have been a mess with this whole breast cancer scariness.

so as i predicted on that day of the extra mammogram slides...there was concern. and they battled with my right breast (not even the breast i had found the initial lump in) to get the proper images. and those images led to another u/s...and that u/s led to a u/s guided core needle biopsy.

and let me just tell you about biopsies just in case you are wondering...they are actually not a big deal. it was a walk in the park compared to being pancaked in the mammogram machine...but either way i was terrified and i did end up with a golf ball sized hematoma...oh and it was 2 days after my birthday on the day i was to have birthday celebrations...The Cure concert...i was still able to go...and guiltily i will admit the hemotoma was probably my own fault cuz i drank that night and thinned my blood causing excess bleeding...but hey...it was my birthday and my first real concert.

so back to the biopsy. afterwards, i had visions of having to go for chemo. losing my hair. losing my breasts. of dying. of my family being devastated. it was awful. and i was a mess at work...and i missed a lot of days...and i lost my job cuz of all of it cuz i was to messed up to even communicate what was going on and how my job could help me. and i had to wait 11 damn days for that pathology report!

but...no cancer! however, numerous things were found that were cause for alarm and elevated my risk factors. first off, i was and am very dense. my breast density is in the highest range of between 75-100% which is translated to a birads 4. secondly, i am fibro-cystic (so bad that i have to sometimes hold my breasts when going down stairs because they are so painful) and so lump infested that i had to take a picture of my breasts and map out the lumps so i could tell what might be new. my breasts are littered with cysts through out...some really tiny, 5 that are about pea sized, and one that is almost the size of a golf ball...and in addition to this golf ball, i can feel additional cysts on top of this ginormous cyst. i am worried what could be hiding behind it too.

and then there are the more serious findings: calcifications and cystic structures that were biopsied were/contained proliferative breast disease: apocrine metaplasia (scroll to comment section) and sclerosing adenoma...and i also have what appears to be a fibroadenoma or blood filled cyst. so to say my breasts are over active is an understatement.

now here is the best part. after learning all this at my follow up appointment with dr. l...he goes through some of the paperwork...and he is like "OH! did you get a call back yet for another biopsy? and i am all "Noooooooo....whhhhhhy?" (fear, fear, fear.) he reads what the sheet says: patient needs to come back for a stereotactic breast biopsy because the site in question was not sampled satisfactorily. (seriously...by this time i think i have completely lost it...well internally/mentally i have...but somehow i manage to keep it together.)

mind you i got a prescription of lorazepam/ativan to get me through and i called my dad to come from 6 hours away so he could take me. and he did...which was really nice...(my dad is being more supportive than i imagined he would be because i know this is very scary for him...and i think his inclination is to try and distance himself from it because it is painful to see his daughter suffer.)

fortunately the second biopsy in june 2008 only found the same findings as the first...but i had to wait another 11 excruciating days...and i had to track the results down myself because dr. l had gone on holidays. i got them straight from radiology.

i would say at that point i started considering prophylactic breast mastectomy. coupled with my risk factors (i will leave the genetics counseling for another post)and family history i feel like i am just a ticking time bomb. and as you can see it has been a year and a half journey since consideration in june 2008 to get me to the point i am today.

and along that journey i have still had scares. u/s in december 2008 for new lumps i found in right breast that turned out to be new cystic structures. mammogram, u/s, and also breast mri in may 2009. in june 2009 i got all of my imaging put on disk for my own records and am able to look at my breasts internally on my home computer...and i can see all the stuff that is going on in them right before my very eyes on my computer screen.

even the other day-monday night...just lying in bed...i felt my left breast and was shocked to feel how prominent some of the cysts are...they feel as if they will poke right through my skin...and this then translated into a nightmare of having breast cancer.

and so, these are the experiences leading up to my decision. there is no way i can express the depth of fear and anxiety i experience through words but i hope this gives you a little bit of understanding. and i also want to share a couple of videos of e.d. hill who has shared a similar journey as mine that has appeared on the view and is documenting her journey as she goes through nipple sparing pbm with expansion, and then to implants:

(if videos don't work you can go directly to the site: http://theview.abc.go.com/category/tags/ed-hills-story)

6. details

so how exactly do you reconstruct breasts after they have been removed? well...fortunately in this day in age this is "not your mother's or grandmother's mastectomy". things have changed and improved over the years.

i am going with a procedure called "nipple sparing pbm with tissue expanders to implants." this type of reconstruction involves 2 surgeries.

first off, i will have the mastectomy, where my actual breast tissue is removed by my oncologist breast surgeon. in addition to the breast surgeon i have a plastic surgeon who will begin reconstruction at the time of my mastectomy. when the tissue has been removed from each breast, the plastic surgeon (ps from here on out) will then insert tissue expanders beneath each of my pectoral muscles.



tissue expanders (adjustable implants) are sort of like an empty balloon. they are placed behind the chest muscle (pectoralis muscle) to stretch the muscle and skin until the new breast mounds each reach a size that is slightly larger than the desired final size. the partially inflated expanders are inflated in stages weeks following surgery after my surgical incision sites have healed, however i may have an initial fill at the time of surgery. small amounts of saline solution (salt water) are used to inflate the expanders via an incorporated valve built in to each expander.



a second surgery is required (hopefully and most likely out patient surgery) to remove the expanders and replace them with permanent breast implants. i have chosen mentor high profile round cohesive silicone implants.



what's that you say? silicone? silicone has come a long way too. and the type of silicone implants i am going for does not leak. in fact, you can sort of compare them to gummy bears!




if for some reason the implant ruptures or breaks down the silicone will not leak because it sort of resembles the texture of a gummy bear!

5. this just in

just got my surgery date. march 15th, 2010!!!

4. doing everything i can

pbm seems like a bold decision to some. several times i have had people tell me to just change my lifestyle and adapt a healthier eating pattern to prevent getting cancer.

um...yeah...i did that already. i think often the choice of choosing a pbm is coupled with an awareness of other triggers that could cause breast cancer and this awareness not only causes many to choose pbm, but to also change our lifestyles.

so in addition to pbm...in the last year and a half i have become a vegetarian...trying to stay closer to the side of veganism and high raw diet in addition to choosing organic and fair trade products as much as possible. i try to avoid foods that may be a potential trigger as well like soy. i also try to keep an eye on, and avoid environmental triggers. this includes not using plastics as much as possible, avoiding bpa's. avoiding beauthy care and cosmetic products that contain harmful ingredients that can trigger reactions in the body to manufacture higher estrogens...which can lead to breast cancer.

i do admit that i need to get myself more physically active...and this is my pbm resolution. i think i would like to get more active by cycling, running, swimming, and walking. hiking will definitely be on the list as this is something i like to do anyways when the weather is warmer. i might even join a gym.

i thought of the contents of this post while making a smoothie i just concocted last night that i am totally nuts about! i have a few others i enjoy as well. i will share two of my recipes below. these are my own creations, so please use them, but don't steal them with out giving credit. you can share by linking back to my post.

Chocolate Berry-Delicious Smoothie (1 serving)

1 - C Chocolate Almond Milk (I love Blue Diamond Growers Almond Breeze in Chocolate)

1 - C Mixed Frozen Berries (I use a combination of blackberries, blueberries and raspberries)

3 Tbsp - Protein Powder (I swear by Nutiva Hemp Shake Protein Drink Mix in Chocolate)

1/4 C Oasis Health Break Antioxia Pomegranate Juice

Blend in a blender till smooth, serve, and enjoy!
(Since this one is so new I will be experimenting with it. I will try adding a banana...maybe some peanut butter. I will try to see if I can camouflage some spinach or kale into it as well.)



Zingy Fruit Action Packed Smoothie (1-2 servings)

3/4 C Orange Juice

1/4 C Sweetener (I use Oasis Health Break Antioxia Pomegranate Juice but you can use honey or gasp...a tsp. of sugar or other sweetener.)

1/2 C of Yogurt (I won't use anything but Vanilla flavoured Danone Activia)

1 C Mixed Frozen Berries (Strawberries, Raspberries, Blackberries, and Blueberries)

1 Banana

1 Hand full of Spinach (You won't even notice it! I promise!)

1 Tbsp Ground Flaxseed (I use Omega Nutrition Cold Milled Flax Seed)

1 Tbsp Vegetable Powder (I use Progressive VegeGreens)

Layer wet ingredients first, then fruit and spinach, and powders on top. Blend in a blender till smooth, serve, and enjoy!

Do you have any great smootie recipes to share? Please feel to comment!

3. clarity

yesterday was such a low, low day. and yes, they do come once in a while. i know they can be scary and intimidating and worrisome for other people but for me it is at these times that i get clarity while working through the emotions. today was a brighter day.

this is going to deviate a little bit from the PBM journey as some of you expressed concern over my troubling experience with the assault. well, today i met with a social worker who is helping me navigate the whole court system. she really helped me to understand more fully what happened and how i was taken advantage of. i've been having times where i was blaming myself but deep down inside i knew this did not sit right.

just having someone take the time to validate me and validate what i am experiencing was so helpful and renewing to my broken spirit. she is going to advocate for me and is going to get me connected either with a legal aid or a pro-bono lawyer so that i can move forward and charge the guy in addition to the police charges. i may even be able to get some financial restitution back due to the emotional, physical, and financial desolation i have found myself in.

additionally, she is able to make a referral from herself to a psychologist/psychiatrist to get me the emotional support the i need in the here and now. so i just wanted to communicate this to you so you know that i am not completely left hanging in the balance.

also, i do not think for me that it is an option to delay surgery because of this. my fear of breast cancer trumps all of this...it has already been an agonizing 2 year journey and i would be damned if i got breast cancer cuz i delayed this surgery due to what this man did to me. it seems to me that, that would give him way more power than he should have ever had in the first place.

k, nuff for now. i am working on an english paper and the words are flowing so back to it i go.

2. mask

this post has been edited. some content has been removed. the original post served it's purpose to help me work through some very heavy emotions i was experiencing. i am at a stage now where i may share this blog with friends and family and would like to maintain some privacy in certain areas that i was addressing.


i've been really angry lately. well actually, for a long time. i am frustrated and tired of the fight. i have struggled...and i mean I HAVE STRUGGLED since well before the day my mother died. mom died of breast cancer when i was 15 and she was 38.

i am floored and often overcome with sadness that my family never was able to adequately stepped in and take over to provide emotional and financial support since that day. i can sort of understand my father not being there emotionally after my mom died. i moved in with him a few months after she passed but it was a strained relationship long before the death of my mother. my parents split up and divorced when i was 12 and visits with my dad were few and far between. i guess i can't really blame my family either because they were all reeling at the loss of my mother too.

so, by the age of 16 i was living on my own. i was supported by the government via social services and orphans benefit...but this did nothing to ease the agony i went through of trying to figure out how to cope with the loss of my mother.

omitted

omitted

omitted

my mother died. i got forced into the wilderness. i've been there ever since. there's no home to go back to.

omitted.

i am over come with despair. and then i wonder...what is the point in even trying to save my life when there is not much of a life to save anyways. i am still going to be alone. maybe it would be better to get cancer and die quickly.

i don't want to come off as all "me, me, me" either. i know i am a good person. i do the opposite of what people have done. perhaps because i know how painful it is. i go out of my way to help people. even simple things like opening a door and smiling at a stranger on the street. spending hours with a mother who lost her child just letting her talk things out...or not talk things out but just be there with her so she does not have to be alone in her house while her husband is at work. i plan on going into nursing where i will dedicate my life to helping others.

often this is taken advantage of. my last employer/landlord did this to me. took advantage of me in horrible ways. offered me a better life...a family. i sucked it up--missing the signs of how he would cut me down verbally and let me believe i was worthless. he would accuse me of being a whore and would argue as i defended myself adamantly and in my insane way of trying to prove my point that i was good and not a whore he would sit and watch as i cut myself. i let him take advantage of me because i was afraid to lose my home and job. i also needed him there...or so i thought, to help me navigate through my breast cancer scares and ultimately to be there during my recovery from my pbm. it is sick to say but i slept with him out of my fear. in the end it culminated with him bashing in my face while i was driving the company vehicle. he gave me a 3 day concussion and fucked up my shoulder. 5 months later i am still in pain...and that does not even touch the emotional pain and anguish i endure. i lost my home and my job all in one day.

omitted

god, i am in a bad place today. i have such an urge to cut...but i won't. i just wonder if there are really any people on the FORCE boards that struggle the same as i do. the emptiness. the pain. the hurt. the anger. the bitterness. everything...even the simplest things are an uphill battle. i just want to be happy. i have never been happy. and yet, there is this hope that keeps me going.

i titled this post "mask" cuz all this stuff is inside me. from the outside, you would not gather this. i try to come off as positive and cheerful in life. i am there for others. i try to smile often. if you saw my picture, you would probably say "what a beautiful girl with a beautiful smile." well, i just wanted to let you know there is a storm that rages on inside.

1. intro

i'm 33 years old.

i will be having a nipple sparring prophylactic double mastectomy to manage my risk of breast cancer.

i do not have breast cancer.

i do not intend to get breast cancer.

as of yet, i do not know my brca status.

some people say this is bold and drastic.

i think sometimes i feel this way too. it is such a heavy topic. it's not something i can just talk about openly with other people. i almost feel ashamed. i feel like i have to put people at ease and down play it so i don't freak them out. i try to sell them on the high points of possibly getting a better pair of breasts than the ones i already have. i try to sell myself on this too.

i feel like i mostly walk around and struggle through my life with this big dark secret.

sometimes, i just want to shout at the top of my lungs what i am going through.

i am very anxious. and stressed out. i feel so alone. overwhelmed. i feel like i am running a marathon and i am getting near the end. my feet are dragging. i am out of breath. i just want to get this surgery over and done with so that the weight will be lifted and i can go back to enjoying life...did i ever enjoy life?