I’m so sorry that haven’t been posting lately; I’ve just been way too busy. Yes, I know that’s not an excuse but, come on people, I can only do so much.
Anyways, for the past couple of months, I have been interning for FORCE (Facing Our Risk of Cancer Empowered), an organization that’s dedicated to providing the right information and support for people in the hereditary breast and ovarian cancer (HBOC) community or facing other hereditary cancers, including people who have inherited either the BRCA1 or BRCA2 mutation like myself.
As anyone can guess, FORCE is an EXTREMELY important source for others like me. The people who work and volunteer are out-of-this-world, supportive, kind, loving, and caring. If you are part of the HBOC/inherited cancer community, or have been affected by it, than these ladies have your back through and through. And interning for this organization just increases my gratitude and admiration towards everyone involved with FORCE.
FORCE is truly a gift. It’s great to see that I’m not alone in this crazy journey I have to face.
With that being said, this is where I need your help. For October, I need to raise $250 by my birthday, October 29th.
If you could, please donate a few bucks. All the money that’s raised goes to research and to help other people and families like mine.
Here’s the link. (Press the sentence. It’ll lead you to my page.)
Thank you so much! Everything that’s donated is much appreciated! Happy October!!!
So on this blog, I’ve never really talked about the MRIs I have to get every six months. Sure, I’ve mentioned it once or twice but I never really TALKED about it. And, since I had to get one a few weeks ago, I thought, “You know what? I think it’s time to talk about this god-awful test.”
Well, if you’ve never had a MRI done, you go into this room with a big, white doughnut-looking machine. There’s also a bed on rails connected to the doughnut hole so that the technicians can move you in and out of the MRI.
An MRI machine (if my description wasn’t good enough for you)
Now, before this whole BRCA mutation shenanigan, I’ve had MRIs in the past; I had to get many on my right ankle and one for my head. So, usually I either just lay there with my ankle in the doughnut or with my head in a cage in the doughnut. However, when it comes to breast MRIs, it’s completely different…
Back in December was my first out of many breast MRIs and it was a very unpleasant experience. First, you need to get an IV (which is a nightmare for me since I have TERRIBLE veins! I had to get stuck three times before the nurse could find a good vein.)because they put this dye stuff that lights up any abnormal anomalies that could possibly be cancer. Plus, the dye stuff that they put into you makes you feel queasy and short of breath. (Well, I don’t know if that actually happens to everyone. I sure as hell hope not.)
Then, you have lay on your stomach and put your boobs into these two holes which makes them feel like a pendulum; a very uncomfortable pendulum with a hurting back because you lay there for an hour and a half.
Bottom line is that these MRIs are not fun and I hate having them.
So, about two weeks ago I had my second breast MRI and I was totally freaking out that I would have the same horrible experience like in December. But, to my surprise, it was much better….Thank God.
The nurses only poked me twice with needles. I figured out a breathing technique that helped me when the dye went through the IV. And, the MRI only took thirty minutes so my back didn’t hurt as much! Let me tell you, this was definitely a better experience than the first and hopefully, all my next MRIs turn out the same way.
However, I guess I don’t have to worry about that too soon….
Last Wednesday, I saw Dr. Wickerham (my boob doctor if you can recall) and he said that in December, I don’t have to have an MRI because the past two have been negative and my breast exams had been good too.
Well, that was music to my ears! Boobs are doing good and no MRI in December!
Yay for good news!
Warped Tour! (yay!)
I didn’t get to blog about this but I will talk about it here. A month ago today, I went to Warped Tour with my sister, her friend, and my dad and it was definitely the best day of my summer!
I got to watch We the Kings, Motionless in White, and Sleeping with Sirens perform. I was able to see Falling in Reverse (one of my favorite bands) from the handicapped tent (because my sister was using crutches), which had an AMAZING view! And I was able to watch and meet this band called Palaye Royale. Three things I have to say about them: fun, entertaining, and sexy…very sexy. They were so good that I bought their CD and a tank top; I’m now a big fan and damn proud to be one!
Even though I had only been out of my splint for a week at that time, I pushed my ankle to its max so I could enjoy the day. I didn’t regret any of it!
So, for your pleasure (and because I didn’t take any pictures or videos), here are my favorite songs from those five bands. Enjoy and appreciate this wonderful music 🙂 If you like it, great! And if you don’t….sucks to be you, I guess.
(I do not own these videos. They come straight from the bands’ YouTube pages so that when you click on the video, they get more views :D)
Hello to all my family, friends, followers, readers, and the random people who just stumble upon my blog….Guess what???
I’M BACK!
I have been on a break for a little over two months now and let me just say that I needed it sooooo much!
So, what have I been doing while on break?
*Reading. Reading. Reading.*
Well, first of all, not to pat my self on the shoulders or anything, but I have FINALLY finished the Harry Potter series after reading it for a year! I am now a better person for doing so and feel a little completed inside.
And if any one is wondering, or if I haven’t told you yet, I am in the Slytherin house, which is AWESOME!
I’ve also read a few other books like Me Before You (which is FANTASTIC!) and a TON of manga (one of my many obsessions).
*I’m writing a book*
So, I’ve been writing this book for the past three years. It’s based off of a short story I wrote for my senior English class in high school and over the years, it just seems that I haven’t been satisfied with the direction of the story…Until now.
I’m finally satisfied with the direction of the story, with the development of the characters, and with the message my readers should get from it. Yeah, it’s still going to be a long process of getting it done but I have the confidence that, when it is, it’s gonna be good.
Patience is definitely a virtue I don’t have but one I need if I want this book done right and in the time frame I want.
*I had surgery*
So, back in February, I had completely screwed up my right ankle because I had decided to wear heels to celebrate my roommate’s birthday. Well, after that sprain (and spraining my ankle three times before that), I had completely torn one of my ligaments, partially-tore two other ones, and had a lot of fluid build up. Finally, I had reached the point of surgery.
So, on June 2, I went under the knife and I came out swinging just a few hours afterward, ready to take on the world in killer heels….Just kidding, I came out of the hospital, naming my splint Charles 1.0.
The pain in my ass known as Charles 1.0.
You know, Charles 1.0 and I were only supposed to be together for two weeks, then I was supposed to get Charles 2.0, a walking boot. But, did that happen? Hell no. Of course that didn’t happen!
Because I wasn’t allowed to move my ankle whatsoever, I HAD to use Charles 1.0 for a whole month! Let me tell you, that was the worst month of my life: being non-weight bearing; having flaky, itchy skin underneath; and having horrible back pain from sleeping on the couch.
Luckily, a few days ago, my desperate cries were answered: I got rid of Charles 1.0! And in exchange, I received Charles 3.0, a brace.
Charles 3.0
All I could think was “Thank God! Something manageable!” Oh, how wrong I was. Charles 3.0 is just as much of a pain in the ass as Charles 1.0…Great….
Anyways, that’s what I’ve been up to recently. So, let’s start talking about this blog of mine. I, with the help of my little sister, have figured out another way to go about running it.
First of all, I’m going to start posting at least twice a month. And yes, I will still continue to post stuff specifically about my views and life with the BRCA2 mutation.
However, the blog is called “LIVING As A Mutation.” I want to write stuff about how I’m living my life, whether it concerns the gene or not! I want to show that this mutation doesn’t define me whatsoever.
And that’s what I’m going to do.
I’m going to start writing posts that have to do with things I like doing, watching, reading, listening to, etc. I’m going to get more personal so that you guys can get to know me beyond the gene.
I’m so excited about this new approach and I can’t wait to get started!
(P.S. Yes, I did use Backstreet Boys’s lyrics as my title and I’m not ashamed. I will never be ashamed. :D)
The title of this blog post was inspired by comments and questions my OB/GYN said to me when I saw her last December. That was my first time seeing her since finding out about my mutation. And let me tell you, that was one hell of an appointment.
So, at this appointment, my mom and I were sitting and talking in the patient room while we waited for Dr. Sober to come in. In all honesty, it was just supposed to be a regular check-up; I never really thought we’d talk about the mutation, but I guess I should’ve known it would come up sooner or later.
Anyways, I don’t remember much about the appointment, and that’s OK because that’s not the highlight of this post, but I do remember three things that happened: Dr. Sober saying, “We may have to start freezing your eggs when you’re twenty-six, but, I’m not sure”; Dr. Sober saying, “So, I assume you have a boyfriend.”; and then getting a metal clamp thingy stuck up….well, I bet you can figure out the rest.
However, the two things that Dr. Sober said to me that day haunted me for a while that Christmas break (and even now, I sometimes find myself playing them in my head over and over again). So, let me break down each “Dr. Sober quote” and why they bothered me so much back then and even today.
Let’s start with her first quote: “We may have to start freezing your eggs when you’re twenty-six, but, I’m not sure.” Why she is saying this is because, as you guys may know, the BRCA2 mutation also increases the chances of getting ovarian cancer. And, just like with the breasts, there are many different ways to screen and prevent (or at least to try to prevent) cancer from ever developing such as using screenings, birth control and chemoprevention, and surgeries.
Obviously with Dr. Sober’s comment, it feels like she is leaning towards surgery because why else would we freeze my eggs? But, that’s just an idea she came up with because she doesn’t have a clue of what we need to do since I am her first twenty-one year old patient with the mutation. So, you can imagine how terrified I felt; not only do I not know what’s going to happen with my ovaries, eggs, and tubes….neither does my doctor!
This unknown that I’m currently faced with puts a damper on my thoughts about having a family in the future. If you’re someone who knows me really well, I love kids and I can’t wait to have them. I want a huge family of beautiful, geeky, sports-loving babies. But, every time I think of having a family, this unknown pops up and won’t leave me alone.
Though, we did come to the conclusion that she doesn’t really want to do screenings because they aren’t that accurate. Also, I would only have my period four times a year so that I can have extra protection. Go birth control!
Now, let’s move on to her other comment: “So, I assume you have a boyfriend.” This kind of caught me off guard. Why is she assuming this? That’s none of her business. But then, it dawned on me…. a few years ago, Dr. Sober told me that when I have a stable relationship that that should be the time I get the genetic test done. Well…I didn’t listen to her obviously. I was single when I had the test done…I was single when I went to her office…And I’m single as I’m writing this post.
I do understand where Dr. Sober is coming from; she wanted me to be able to have someone who I can discuss these big decisions with and have someone to lean on other than my family. And sometimes I do think I should’ve waited because of those factors. Yes, it would be awesome to talk to someone about the future and what I should do. Yes, it would be amazing to have someone else to cry to other than my mom. But, at the rate I’m going concerning relationships and the such…I probably would’ve gotten cancer before knowing I had the mutation.
However, even though I understand where she’s coming from, I don’t think she should’ve said that. What she should’ve said was whenever I was ready to handle the possible outcomes of the genetics test would be the best time to take it. By Dr. Sober using “having a boyfriend” or “having a stable relationship” as a criteria for getting the test done, it made me feel as if I wasn’t going to be strong enough to handle the possibility of being positive. But…I think I proved her wrong.
Let’s just say I’m glad that day is over with. I became overly emotional (and I’m already an emotional person so you can just guess how bad this was) over her comments and allowed them to haunt my thoughts for a good few weeks. Yeah, I still think about her comments at times and, quite frankly, they’re probably two of things I think about the most when it comes to the mutation.
Right now, I’m not really looking for anyone and I’m certainly not ready to have kids. But one day, I’ll be ready for both.
When that day comes, hopefully I will be able to have the family that I want.
Hopefully, I’ll find someone who will be willing to be part of my support system…and come to appointments with me…and be someone I can talk to when this stuff gets to be too much for me to handle by myself.
But, that’s all up in the air right now. So, I just have to wait and see what happens because everything happens for a reason. I just hope everything goes in my favor.
WARNING: Possible spoilers if you haven’t read or watched The Fault in Our Stars
P.S. Shame on you if you haven’t read it….You should go toBarnes and Nobles’ website right now and purchase it.
After my first year of college, I decided that I was going to get my first tattoo. Now, as you can imagine, trying to come up with something that I’ll love having on my body for the rest of my life was really, really, REALLY nerve-wracking. After having constant battles with my thoughts for a few weeks, I finally came up with an idea; I was going to get my favorite line from my favorite book of all time.
And what was that line, you may ask? Well, it was a quote by Augustus Waters in John Green’s novel, The Fault in Our Stars. It was what he told Hazel to describe that his osteosarcoma was back when they were sitting on a bench in Amsterdam. He said, “I lit up like a Christmas tree, Hazel Grace.”
My tattoo a few days after getting it.
So, I have had many people over the past couple of years ask me why I chose that particular line because, in all honesty, it’s a really sad quote. I usually just tell them that it’s my favorite quote out of the book (which is true as you already know), but there is definitely a deeper meaning to it. And I’m going to explain it to you in this post…starting from the moment The Fault in Our Stars changed my life.
It was Christmas 2013 when I received my now beloved and cherished copy of The Fault in Our Stars. At first, I only wanted the book because I knew it was a love story about kids with cancer and those are two things I like reading about. However, as soon as I dived into the book, I was mesmerized and captivated; I fell in love. I cannot tell you how many times I have cried reading it. I cry in the exact same places every. single. time. It’s just a beautiful story that can touch every person in different ways.
My copy of The Fault in Our Stars.Another picture of my copy.
Not only did I fall in love with the story, but I fell in love with Augustus Waters (I know, many girls do when they read the book). However, what I loved about Augustus the most was what he did for Hazel and how he looked at life.
While Augustus was alive, he was able to make Hazel live again and value life, no matter how crappy it was for her. And once he had been diagnosed with cancer again, Augustus still remained his life-loving self until he couldn’t anymore. No, Augustus wasn’t that person who tried to stay strong until the very end because that would’ve been impossible; he was accepting of his reality (for the most part) and I admired that.
And Augustus made me realize that that’s how I have to act if I ever get diagnosed with any kind of illness and, most especially, how I should act if I found out I had the BRCA2 mutation. He was one of my inspirations to be strong and to maintain the mind set that he has (pre-and post- diagnosis because both are commendable).
So “I lit up like a Christmas tree, Hazel Grace,” means so much more than being my favorite quote from my favorite book. It’s the turning point of the book. It’s the best way to break bad news. And, it’s the line the brings the whole essence of Augustus together.
The whole quote from the book.
Augustus was (and still is) an inspiration of mine (even if he’s fictional). And even though my Christmas tree hasn’t lit up all the way, one light is now on and it’s just a matter of time until the rest follows. By having this tattoo, it’s is a constant reminder to stay strong and love life. If Augustus could do it, so can I.
Ever since I was a little girl, I’ve hated going to the doctor’s office even though I like and have a good relationship with every last one of my doctors (I’ve known most of them for a very long time). But, there’s just something about the visit and the anticipation that makes me squirm in the waiting room seat.
So just imagine how I felt when I had to add a new doctor onto my already long list just because of this stupid mutation? Dr. Wickerham was my new doctor’s name and he was going to be my breast doctor (or, boob doctor, which is what I like to refer to him as) since he specializes in high risk patients like myself.
In all honesty, there were only two things that bothered me: 1) I didn’t know how I felt about having a man be my boob doctor and 2) None of the doctors I knew really knew Dr. Wickerham personally (which was something I wasn’t used to because my personal care doctor knows everyone and tells my mom, who works for him, about the people I would go see). But alas, the only way for me to get rid of these worries was to suck it up and go see Dr. Wickerham….not that I had a choice anyways.
I forget the exact day I went to his office, but I do remember it was the same day I got my third tattoo, so it was either the first or second week in August. I was glad that both of my parents decided to come with me to the appointment because once I saw the entrance to the Breast Care Center, I thought I was going to pass out.
Walking through the center doors, all I could think was, “This is my life now. I hope I like this doctor.” So, I signed my name on the sign in list and then went and sat down with my parents. And as I was starting to relax and joke around with them, the front desk lady called me back to put my information in the computer….and what name do you think came out of her mouth? Not Alexandria…not Alexandra… but Alexander Groves (which she still calls me). Right there, I was done and just wanted to go home. If that’s how the appointment was going to start out, I didn’t want to be present for the rest.
Thank God, soon enough, I was being hauled into the patient rooms (with my parents right behind me) by a very friendly nurse who could actually pronounce my name. She definitely was a saint compared to the front desk lady. Anyways, after the nurse put me in a room, she gave me a dressing gown, told me to only take off my shirt and bra, and said that Dr. Wickerham would be in the room momentarily.
Finally, the moment was about to arrive and I was going to meet my new doctor. In about 10 to 15 minutes, my parents and I heard a light taping on room door. We all said come in and in walked this white/gray haired older man, with a huge welcoming smile on his face. He introduced himself to us and then started asking me a bunch of questions such as where I went to school and what I majored in?
I was starting to become more relaxed and was warming up to Dr. Wickerham right then and there. He was an extremely personable doctor, which is something I love because I want to be able to connect with my doctors and have sort of a friendly relationship with them (nobody wants an asshole for a doctor). But what I especially admired about Dr. Wickerham was that he was (and still is) extremely concerned with trying to make me feel at ease about the mutation and any concerns I have about it.
When he was about to do a breast exam, even though he could draw a curtain, Dr. Wickerham had my parents step out of the room. At first, I thought it was because he was going to do an exam on my boobs, but that wasn’t just the case. The biggest reason he let my parents out of the room was because he wanted to see if I had any questions that I was afraid to ask in front of them. That right there was one of the best things a doctor had ever done for me. It really showed that he cared, not only for my physical health concerning the BRCA 2 mutation, but for my mental health concerning it as well.
Since this visit, I have seen Dr. Wickerham once in December to talk about my first MRI and its results (which I will talk about in another post). Then, I’m going to see him in June after my next MRI.
Even though I was skeptical about Dr. Wickerham in the beginning, I can now say that he is one of my favorite doctors on my list. Yes, I still think it’s a little weird to have a guy as my boob doctor but hey, he’s definitely the best in the business and he’s really nice. What more could I ask for?
At first, I was a little apprehensive to make this list for numerous reasons such as coming across whiny or even sounding a bit bitchy. But you know what? I don’t care because I feel that a list like this should be out here on the Internet. And if there already is one, then oh well, here’s another one from my point of view!
What NOT to say or do to someone with the BRCA 2 mutation (top 5):
Don’t show me pity.
This probably makes my blood boil. Why? Because people make me feel as if I have the word “dead” stamped right on my forehead, which is completely inaccurate. The best thing about finding out about the mutation is that now I can do something about it; what sucks is that it will always be there. I know pity may be the first thing someone wants to show because they don’t understand what’s going on, but don’t do it. Honestly.
Don’t say anything stupid.
So, I know this may seem pretty vague but what I’m trying to get at is… be considerate. I have had many people say a TON of stupid things to me, and that’s just between my family and friends. I have heard things such as “You won’t be able to breast feed you children” when I was talking about preventative surgery or someone jokingly saying “You’ll be empty like (insert name here)” when I was talking about my ovaries and tubes. Most of the things are inconsiderate and stupid. I’m not telling people to think before they talk around me but if you piss me off, this is why.
Don’tgive me your two cents.
If you don’t understand what I’m going through or if I didn’t ask you for your opinion, don’t give it because it’s not wanted or appreciated. In all honesty, your opinion is more hurtful than helpful. I have had some people say to me that my original plan of when I wanted to get my preventative surgery was “a bad idea” because, during that time, no one will hire me and, apparently, it will be harder to keep or find a relationship. Again…if you aren’t in my situation, don’t say absurd things like that because those opinions are ridiculously untrue.
Don’t say everything will be alright.
Nobody knows if everything is going to be alright. If I don’t know if my own health is going to be alright, you sure the hell don’t. I know this saying is used so that people can stay positive but unfortunately, it also persuades people to forget about the negative side of things. Especially concerning health, you have to be realistic and realize that everything. may. not. be. alright.
Please don’t act like prayers make everything better.
I feel like this is the hardest “don’t” that I could ever come up with because sooooo many people do this. Personally, and I’ve felt this way for a long time, I don’t think praying to God makes things better, especially when the situation concerns medical issues. I know it makes the person praying feel better, but I feel like that’s about it; the situation at hands stays the same. I’m still mutated and the mutation may or may not “turn on.” I know people say that life’s a gamble, but in all reality, my life is now, officially, a gamble and if God can’t fix, then neither can prayer.
Now, for what to say or do, I have come up with three (yes, three) simple things:
Ask questions.
So this will help you from saying anything stupid (somewhat) or showing pity. Questions are always good. Don’t think someone would be offended. Questions are a way for the affected person to deal with their illness, or that’s how I thought about them. They forced me to be more open about my mutation and willing to educate people who didn’t know as much as I did. By asking questions, it shows that you’re curious, concerned, and willing to understand what’s wrong.
Listen.
I don’t feel like I have to put much here because it’s always (and I mean ALWAYS) good to listen to a friend or loved one. If I feel overwhelmed with information or just need to talk about anything (surgeries, tests, the future, etc), please, just listen, even if you don’t understand. Listening goes a long way and is extremely appreciated.
Be supportive.
Just be there, plan and simple. Whether or not you agree with my decisions on how I want to tackle my mutation, just support me. Like listening and asking questions, support shows that you care and that’s all I need.
Well, that’s my do and don’t list! I know there may be things that you may disagree with, but, this is how I feel based on my experience so far… Until next time!
Before all of the chaos of finding out I had the BRCA2 mutation, I was able to balance all of the different, little sections of my brain pretty well. However, when you are hit with heavy news that kind of takes a toll on your mental state.
I find myself thinking about the doom and gloom at times. It definitely feels like darkness is engulfing you and there’s no way out.
All the possibilities on what to do next start swimming my head. The first thing was getting a double mastectomy. The idea of one day getting rid of my natural chest terrifies me because maybe they’ll look and feel different from what I’m used to now.
I think of what I can do to make my new reconstructed boobs feel familiar or up to my standards. I could get nipples tattooed on them but… I don’t think that’s for me
After much contemplation, I have decided that maybe getting full blown-out mastectomy tattoo would be more suitable for my personality and stylistic taste.
I also have a tendency to think that I’m broken, not just mutated; something that can’t be fixed or loved.
And will I have to freeze my eggs and remove my ovaries when I’m 26 years old?
And why can’t this mutation just stop at me?
And why do I feel so alone?
And will I die young? (Bachelor’s Grove, Chicago, IL)
But, you know what? I need to stop thinking about these things and suppress the negativity as much as possible. Sure, they’ll pop up once in a while but it can’t be all I think about. I need to pay attention to the other beautiful sections of my brain that I know can keep my mind off of the mutation.
Such as style…..
Handsome men…
Friends…. (As a side note, I just wanted to add that I’m sad to say that I don’t have a picture of me and my best friend, Teresa, who is definitely one of my biggest supporters. Sorry, T! Love you!)
Family…
Hobbies…
So now the thoughts about the BRCA2 mutation can be seen as more as a nuisance in my life or an “inner demon.” They are just things that I have shove in the back of my brain and worry about when it’s necessary.
Living as a Mutation with BRCA2 