BRCA mutations, surgery & drug addiction?
i have been back and forth with blogging about what i am about to go through.. but after realizing what a difficult time i had making decisions and the lack of information that is out there i have decided to share my story...
short version: i am a 26 year old woman with the BRCA 1 mutation preparing to undergo a prophylactic double mastectomy with reconstruction... i am also a recovering opiate addict with a little over 6 months clean.
the whole story *if i have sparked your interest and you feel you can benefit or relate. i am not looking for opinions as my mind is already made up*
i was about 5 years old the first time my mother was diagnosed with breast cancer. i dont remember much, but i remember that daddy & mommy were crying a lot & that mommy was "sick." my mother had a single mastectomy & after a divorce & a move from long island to westchester life seemed to go on..
i remember when i was 13 my mom had to go to the hospital for a procedure to find out if she was "sick" again. my step father picked me up from school early.. so i knew there was a problem. when i came home my mom told me that she had breast cancer again. it must have been around this time that she was tested for the BRCA mutation & tested positive because she had the breast reconstruction & preventative oopherectomy at the same time if i remember correctly. this time she had to undergo chemo therapy and radiation.
the main thing that sticks out in my head about her second battle with breast cancer is one day we went to the mall, just the two of us, because she wanted to buy some hats as her hair was beginning to fall out. her hair was falling into that hats she was trying on, and looking back now i can realize that she rushed out of there because it was all hitting her at once. i will never forget when we got home she took the dog outside... i went downstairs to see if she was ok and she had her head in her hands, it looked like she was crying... but she was also pulling chunks of hair out of her head and they were just rolling away with the wind. shortly after that she shaved her head.
as a teenager i really was not a walk in the park. i made things very stressful for both of my parents. i was drinking, doing drugs, hanging out with the "wrong crowd" and i am sure that was trying on everybody's patience. i am an extremely stubborn person, and i lived in a world where if i didnt know about the problem, there was no problem, so once the conversation of me being tested for the mutation came up, my answer was absolutely not... why would i want to know something like that?
i took my first opiate at a pretty young age. and it was love instantly. i actually stole some pills my mom had left over from surgery.. nice. as i got older, i experimented more and more and by senior year of high school i was physically dependent on opiates. i was actually buying "crushed up morphine" for several weeks before finding out it was actually heroin... now, you may ask- how could you possibly not know? this all goes back to me living in my ignorance is bliss state of mind.
i went away to college in new hampshire, which was a blessing in many ways. i had no connections up there to get opiates so i really would only dabble every once in a while when i could get home, which wasnt often. after four and a half years of binge drinking and turning my opiate addiction into alcoholism i came home.. and picked up right where i left off..
only they were better! i was working full time at a psych hospital for children. and every single day when i got out i would take the trip to pick up. because i was living at home i spent every dollar of every pay check for 3 years on roxys. i had MANY "last nights" of using, but as any addict knows, one is too many and a thousand isnt enough. i couldnt get enough of this drug.. i just couldnt.
but then.. i got into a relationship with a really great man, i got a new job, made enough money to move out on my own & things were really looking up for me. and then my father died very suddenly, with 18 years of sobriety under his belt (he was a recovering alcoholic).
from there- i went on a death mission. i used more, put myself in dangerous situations, didnt care about where these drugs were coming from, i was traveling around with huge sums of money on me to buy drugs meant to last the week, but would be gone in a night. i would get robbed or a gun shoved in my face, and it really was just an inconvenience. because then i had to go to another dealer. i was putting my life at risk every single day.
one morning after using enough to kill a 300 pound man i had to go to my doctors office. i dont remember why- but while she was drawing my blood she asked me again about getting tested for the BRCA mutation... i said "whatever.. just draw the tube". i didnt care if i lived or died anymore... so what difference would it make? about a week later the results came back positive and i found a lump. i had to get an MRI, mamogram, ultra sound, biopsy, everything.
this is when it all became a reality. every single time i find a lump in my breast or something feels off- that was going to be the day i got that phone call that i had cancer - it wasnt a matter of "if" i got the phone call.. it was "when" i got it. this is when i really started considering the surgery. it seemed so extreme to me - but i knew i could not live in this constant source of anxiety and panic. i met with a doctor who would be doing the reconstruction, she wanted me to quit smoking for 3 months, go off birth control, that just was not an option for me at that point in time.
i reached my bottom some time in march of this year, i believe that physically, emotionally, spiritually, i did not have one more run in me. i was going to die. one way or the other, and i was putting my father to shame. i was lying to everybody in my life. my boyfriend had no idea how serious the problem was, my friends didnt know, even my family didnt know. sure, everyone knew i drank a little too much & got vicious & didnt remember it the next day, but i was grieving, so it was "ok." i am by no means making excuses for my alcohol problem, but the fact that i was taking around 300 mg of roxy a day was certainly of no assistance to my drunken antics.
i had been to meetings before, but i wasnt ready... this time i crawled in.. so broken. i had really done a number on my body, my relationships, everything. i had nothing. no money, no trust in my relationship, and i had pushed every single friend i had away. i got a sponsor, and finally began confiding in someone. it felt so good to tell the truth.
not too long after i got clean i found another lump. went back to the doctor and when she did the exam she made "that" face... i had an ultra sound and the ultrasound tech made "that face"... then the radiologist came in and explained that i had irregular margins and my mother began to cry. they did a very painful invasive biopsy and i had to wait five days for the results. it is a miracle that i did not relapse in those five days.. one week after that i quit smoking and a month after that i went back to the plastic surgeon.
the plastic surgeon, my mother and myself decided on the best procedure for me. i will be having a prophylactic double mastectomy with DIEP flap reconstruction on November 5.
i will go to the hospital at 6am on the 5th, go into the OR and go under for my 12 hour surgery. first the breast surgeon will come in, remove my breast tissue (hopefully sparing my nipples), then the plastics people will come in and make incisions in my abdomen and place small implants on my chest wall and place the tissue (fat) from my stomach over the implant and reattach all of the vessels and all of that micro surgery stuff that i really dont understand..
i have a lot of fears with this surgery, but i know in the long run it is really for the best. i do not want to go through chemo, i dont want to have cancer. many UNEDUCATED people question how a doctor could possibly remove healthy breasts.. i try to brush it off. i am a bit concerned about the pain management aspect of this- but i have been completely honest and open with my doctors about my disease of addiction and i trust that they will do what is best for me and then once i am home i plan on having my boyfriend control my pain medication.
i am here to share my story and experience with other women who could be struggling with the decision of what to do with their brca mutation, or women who are in recovery from drug addition and are interested in following my story.
much love to all, and i will keep you posted.
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