Genetic Counselor appointment and test....and reality

I know this is a long entry...but a lot to share from a few days, and I don't know how to keep it short. So thanks for reading :)

I know this is a few days late, but I had to take a mental break from thinking and talking about this for a few days. Reality hit me like a ton of bricks....which explains the huge headache I had for a few days....it was all bottled up in there, but at least its out now and I feel better. The point of this post is to talk about my appointment on Friday (let me first remind everyone again, I wont know the results for a few weeks), but I am going to start with Thursday.

Thursday morning I had my annual mammogram appointment - the timing of this has nothing to do with my moms recent breast cancer or BRCA2 positive diagnosis - this just happens to be the time of year I get one. Most doctors suggest women with a family history of breast cancer (especially since my mom was diagnosed at just 42), start getting mammograms at age 30. So, this was my third one. I've never been worried or nervous the last two years I had one, hardly thought twice about it. I was usually more concerned with squeezing (um, literally) the appointment in during my work day. Since most of my friends haven't had one yet, it was always fun to be the first to tell them what it's actually like to have your boob flattened like a pancake! However....Thursday was different than every other year. I felt that terrible anxious feeling in the pit of my stomach, as somehow the word "hospital" looked and felt different then it usually does. I had tears welled up in my eyes trying to fight them back as I checked in. I felt sick to my stomach like all the tears were about to come flooding out. I also felt selfish and stupid for feeling this way...I don't HAVE cancer, I am lucky.

I realized everything about my mammogram and the hospital felt so different because it was the reality that this could be my life every 6 months, getting mammograms, MRI's, ultrasounds, etc. Or this could be me at the hospital having a lump removed. Or this could be me at the hospital getting chemo one day. It was just that moment when I realized exactly what was going on...all week I would act to everyone else as if I was fine and it wasn't a big deal, it was a blessing to know if I am positive....blah blah blah. You know how if you say something out loud, sometimes you can distract yourself from the reality that it really is? I let out a few tears in the car by myself, and went about my day.

The appointment with the Genetic Counselor was at 1pm the next day, Friday, and the feeling in the pit of my stomach from the day before was still there....times ten. I did not want to go, I kept fighting back tears while I was getting ready and was 10 minutes late getting there because I was procrastinating so bad. I did not understand why I felt this way. What was the big deal? I wasn't even finding out anything today, just taking the damn test! Now I realize it was because I knew I was going to have to talk about it. I met my mom there and had to keep thinking about Kristin Wiig SNL (Penelope, the One Upper - my favorite... http://www.hulu.com/watch/194734) skits so I wouldn't start crying. I always think of her when I need to laugh because I just LOVE her! And a sidenote - last year when I met with the GC (genetic counselor), I remember thinking "counselor...why do they call them that?" Sounded so dramatic. I thought they should be called a Genetic Specialist or something. That sounded better. I never thought of it as someone who counsels you...well I get it now.

Within two minutes of being in the appointment, I completely broke down, crying hysterically...like that uncontrollable ugly cry. Since I am not hiding anything in this blog, that is the honest raw truth. I feel like Debbie Downer, but that's what happened :) All it took was for him to say "how are you doing?" Or something like that. It all came flooding out. I know I was not just diagnosed with cancer...and that there are plenty of people out there (like my mom!) who ARE currently fighting the disease. So its hard for me to discuss these emotions because this is "just" some test I am taking to see if I have a higher chance of developing cancer in my lifetime...right? No, its NOT "just a test." It IS a big deal. It is life altering information. People who are BRCA positive have up to an 87% (I keep reading/hearing different percentages. Chart above from Myriad.com) chance of developing breast cancer in their lifetime. People who are BRCA positive choose to voluntarily have their breasts and/or ovaries removed, to save themselves from developing either of these cancers. They use their knowledge of knowing as power...which not everyone is blessed to know or have. People who are BRCA positive can pass that mutation on to their children (I do not have kids yet, but its something I do want). I have a 50/50 chance of being one of those "people," who will face those decisions. The GC helped me realize its OK and NORMAL to feel what I'm feeling and what a huge impact it really does have on ones life. The results can affect someone's life immensely. I also haven't wanted to get upset in front of my mom, because the last thing I want is her worrying about me. I know its OK to show your emotions, but I have just been trying so hard to be strong for her. We spent about an hour there, and I felt a lot better when I left and am SO thankful doctors do not simply just give people a test in their office and then call with the results. I can't imagine...I would be completely uneducated on the the before, during and after process if I hadn't met with a GC. Maybe doctors do offer that option actually...but I would NEVER ever suggest it to someone. The actual test, done at the end of the appointment - was surprisingly NOT a blood draw - they can administer the test by blood draw OR saliva sample. I do believe it depends on if you are the first person in your family being tested, which is why I was able to do the saliva way. On a funny note...it was the oddest test - the kit comes with mouthwash, a plastic tube (to spit in), and mini cup (to pour mouthwash in). I had to swish around the mouthwash for 30 seconds, spit in the tube and then "gather up" more saliva in my mouth with my tongue...and spit again. Repeat 3 times. My mouth was on fire after! At least it made for a good laugh...what a weird little process!

The appointment was a lot different than mine last summer, actually completely different - the one last year was spent discussing family history and the GC making a chart of all that info, discussing statistics, costs, etc. An extremely informative appointment. But since I already did that last year, and now that my mom has tested positive - there was no need for discussing history in the family of cancer and all that. But for those of you who were wondering what a typical GC appointment is like, because you are thinking of starting the process...I am thinking I could do another post, and also discuss costs and insurance coverage. My test results should be ready in 2 weeks. They do not tell you anything over phone, they will call to set up another appointment. I am hoping it falls during my spring break at the end of the month, as I cannot imagine the anxiety ill feel going there...considering how hard it was to just go to the appt/test.

On the topic of exactly WHY I got so upset and why this is a hard pill to swallow....I am going to discuss all the preventative measures someone who is BRCA positive takes a different day - and what I, personally, think I would or wouldn't do. Too much info for this post. And quite frankly, not something I am ready to write about yet because that is the reason for my little breakdown. I can talk about it to my close friends, but not something I am ready to share with everyone just yet. I am so thankful for all the people in my life who let me vent and talk about it, and don't judge me for how I feel and are able to put themselves in my shoes and realize what it could mean if I am BRCA positive. I am sure people going through this hear others say "relax," or its not a big deal, don't worry"...but it IS a big deal, and, everyone deals with things differently. I am thankful for the friend who sat through my tears and listened Friday, when I thought I had gotten it all out. it was like part 2. I think I needed someone to say all the things to, that I hadn't wanted to ask or talk to the GC about yet...until I know if I am even going to be positive. There were certain things I didn't want to discuss with the GC yet, because why make myself even more anxious than I already am. It would become too much of a harsh reality if I did.

Oh and my mammogram was fine, nothing to report - but I DO have a funny story about it...ill save for another time/post...when I tell it to people they laugh hysterically, so why not share...laughter IS the best medicine :)