Here’s Your Prize for Being a Mutant….A New Doctor!

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?

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To Do or Not to Do…Seriously

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!

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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.

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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.

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Don’t give 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.

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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. 

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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.

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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.

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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.

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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.

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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!

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Congrats, You Have the BRCA2 Mutation!

For the majority of my life, I had been mentally preparing myself for the day I would find out that I had the BRCA2 mutation. I tell myself, “I have the mutation, I know it. I get everything mom has.” So, I thought by building up that sort of mentality, when I was told whether I was positive or not for the mutation, the news wouldn’t affect me……..Man, was I wrong.

It was July 28, 2015 when my parents and I went to the great Allegheny General Hospital (AGH) in Pittsburgh to find out the results of my genetic test.

Pittsburgh
Pittsburgh
Poster for AGH
Poster for AGH

For the whole 30 minute car ride, all I could do was think, “I have it. I have it. I have it,” while my music was blaring through my headphones.

Once we entered the main lobby of the Cancer Center part of AGH, my parents and I made a right turn down a hallway to get to the genetic counselor’s office. As we made our way down the hall, we passed all of this breast cancer arts crafts that survivors had made and, to be honest, I cringed a little bit. All I could picture when I saw the artwork was my past, my present, and my future.

It didn’t take longer than a minute for the genetic counselor and her student/assistant  to rush us into the private office to chat. As soon as I walked in, I noticed a folder on the table and that was enough confirmation for me. Why would the genetic counselor give someone who was negative for the mutation a folder full of papers? At that moment, my heart sank. Everything I’ve been telling myself came true.

Quite frankly, I don’t remember much, especially what the counselor and her assistant were telling me because of  1) I already knew the information they were telling me because I had done my research many times over the years and 2) So many thoughts were running through my head that I just kind of drowned the two of them out. They were a bit annoying, so I’m glad I don’t remember much about them.

But, I do remember crying. I didn’t think I would cry since I already “knew” I had the mutation, but it seems that being told your thoughts are true by someone who is not yourself hurts a lot. It hurts like hell actually because that means your thoughts have now become your reality.

I could also hear my parents crying. That’s when I decided that I needed to try to stop, gain some composure, and be as strong as I could be for that moment.

As we were getting the parking garage ticket paid, both my mom and dad told me that we were going to do everything to make sure that I don’t go through what my mom did. Dad told me to be strong and mom told me she was sorry for passing the gene to me. I hugged them and said,” I will.” and “I know but it’s not your fault.”

That whole day, we went and told most of my family: my sisters at home, my gram and pap (My mom’s mom and dad), and my grandmall (My dad’s mom. And yes, that is how we spell her name) and my Aunt Jackie (My dad’s sister). My mom also called my Aunt Dot (My dad’s other sister), who was living in Chicago at the time. And after all that, I told my friends and their family. Let me just say, I have so much support from my family and friends, I couldn’t ask for anything better.

To say the least, July 28th, 2015 was definitely one of the longest days of my life. But, even though it can be seen as one of the worst days of my life, I also see it as one of my best days for many reasons. I got to find out that I had the mutation early in my life. I will be monitored twice a year with MRIs and trips to see my breast doctor and my OB/GYN. I now know that there’s a 50/50 chance I will pass this gene down to my kids. And, I can be a role model for my sisters if they ever have to go through this.

Getting the genetic test done and finding out if I had the BRCA2 mutation was something I just had to do. Some people may disagree because I’m so young but, for my sake and my sanity, I just needed to know in order to move forward with my life. I have become more comfortable about talking about the mutation to people who ask, I read any information that may concern my situation, and I use my family as a support system whenever I need them.

So for right now, because I can’t do much about the mutation, I just see it as something I’m living with and taking one day at a time.