It’s Time

I kept hitting the snooze button on my alarm this morning for like, thirty minutes. It’s entirely possible I thought perhaps I’d just “accidentally” sleep through my alarm and then, oops, I wouldn’t have to go to my appointments today. I was sort of awake when my phone rang. It startled me because I switched my ringer to Carol of the Bells by Trans-Siberian Orchestra, so it was super loud. When I saw that it was my mom calling, I figured she was on her way to work and making sure she wished me well before my appointments. That’s not why she was calling. “Don’t leave without me!” She had called into work and was already on the freeway making the trek up to Renton from Tacoma on the 167. If you know the area, you probably know that 7:00 a.m. traffic on the 167 going towards Seattle is about as fun as a pelvic exam. My mom was really sick with bronchitis and missed a week of work, so I told her it was no big deal if she didn’t come to my appointments today. And really, I was okay with it but when she called to tell me she was on her way I was invigorated and jumped out of bed to get ready. Having my mom and Mitch with me today was crucial. I didn’t know how crucial until we were sitting in the genetic counselors office.

Appointment #1: Bob Resta – Genetic Counselor

What a rad dude! The four of us sat in his office discussing the many variables of risk factors for positive results and what it means if my testing turns out positive or negative. Surgery vs. no surgery. Medication vs. no medication. Do nothing now vs. do nothing ever. We discussed the probability of this, that and the other and at what age range I could possibly expect to see a cancer diagnosis take place, if positive. I was both completely overwhelmed by all of the information and numbers and risks and what if’s and different methods and approaches and insurance and timelines and, and, and…but I was also reassured that I was in the perfect place. I felt comfortable with his knowledgeable and capable hands, and I knew that he wouldn’t let anything slip through the cracks. The guy was thorough!

Not that definite decisions are made yet, but when I walked in there I was pretty sure I had decided that if found positive that I would go for a full hysterectomy and keep my breasts. Come to find out, if you have a full hysterectomy at such a young age not only does it send you into early menopause (which, I knew and accepted) but it increases your chances of developing cardiovascular disease. Uh, no thanks. So now, I’m thinking that if positive we’ll go with removal of the ovaries and Fallopian tubes. If positive, my breasts would be under “high risk monitoring” so I’d have a mammogram every six months and a breast MRI every six months starting immediately.

I think I can spout off all of these things very matter of fact right now, but when it comes time to actually make the decision, if I need to make the decision, it’ll be much harder. It’s hard now, but I think it could be tougher later on. Will the reality of things sink in? What will that feel like? How will I deal with that? These are questions that I shouldn’t be driving myself crazy with right now, but it’s kind of hard to turn my brain off. I’m usually the type to deal with a problem once it presents itself. It’s silly and a waste of time to think about this so much right now, correct? My results aren’t back yet, so I have nothing to be worried about right now, right? Yeah, okay. I wish that were true.

We wrapped up our talk and he asked me if I wanted the testing done today. Whoa. Wait, what? TODAY? Oh my God! I’m not ready for this TODAY! I’m not mentally prepared. Did I wear clean underwear? Oh, wait that doesn’t matter. Well, it does, but not as it pertains to this. AUBREY, FOCUS! Without even giving it a second thought, I blurted out, “Yes, I’d like to do this today.” Ah, man! Frig! I had the option of doing the testing with saliva (ewwa!) or with a blood draw. He assured me that both would return the same results with the same accuracy within the same amount of time. So rather than spit in a little tube, I went down to the second floor to get poked with a needle by a nice man that wanted to talk to me about how wonderful South Carolina is. Mental note: plan trip to Hilton Head and Savannah ASAP!

Before we could get the testing underway, I had to sign a few papers authorizing blah blah blah. Here’s the weird part; it took me 10 minutes to get up the nerve to sign the paperwork. I looked out of the corner of my eye at Mitch. My face was hot; my eyes filled with tears and he kept giving me reassuring nods. Okay, so it wasn’t 10 minutes. It was probably 10 seconds, but why was this so hard? This is what I wanted, isn’t it? Just put the pen to the frickin paper and get it over with. I was confused by my reluctance. Do I really want this? What will I do when I find out? Will the results make me feel better/worse? What does this mean for my future? All of those thoughts and many more came in like a wreeeeeeeeeeeckiiiiing baaaaall. You see what I did there? Laugh. It made me smile to type that.

Finally, I just stopped listening to my fears, and I signed the dang paper. He’ll call me with the results. I’ll know by Christmas whether I’m positive or not. If I am positive, I’m fearful of the damper it’ll put on Christmas. That’s the last thing I want, but I don’t want to wait to find out. Here goes nothing. It’s time. Right? Keep reading if you’d like, but appointment #2 isn’t as juicy. 😉

bracanalysis-product-box-hp

This is the box they shipped my blood work and paperwork off in.

Appointment #2: Rachel Beda, MD

Okay. Soooo, she ROCKS! I saw Dr. Beda today for the first time. This was my first visit to Wise Patient Internal Medicine. Dr. Sam Warren will be my primary doctor, but Dr. Beda was filling in for him today. I knew this ahead of time, so it didn’t make the Earth tilt for me which was nice. I discussed my two primary concerns; getting back on Metformin to help stabilize my PCOS and possibly getting something for anxiety. After a great deal of thorough discussion, we determined that I’d be a good candidate for Celexa, and she granted my request for Metformin. Yippeee! I have a follow up appointment in a month to see how all the new meds are working out for me.

In all of the things that are floating around in my head I need to put myself in check and remember that I’m not the only person dealing with this. My mom and Mitch are, too. I put myself in their shoes and imagine what it’s like for them to hear the things I’m hearing. I’m sure they have questions in their minds or feel a certain way about things too. I couldn’t do this without them. If I had to go to all of these appointments by myself – well I wouldn’t go at all. And not to get all dark and depressing here, but the biggest reason I’m doing all of this is so I can know/lower my risk so something bad doesn’t happen to me in the future. Because if something bad happens to me I know that something bad also happens to them, and I don’t want that. It goes for my brother too. I know that he’d probably be very upset if I told him I had cancer. I’m his sister and he already went through this with his mom so it would probably be very difficult for him to hear.

But that’s not going to happen, right? 🙂 My BRCA results are going to be negative! 

Sometimes I type these sentences and think, “I really shouldn’t be sharing this” or “Does anyone really want to read this?” Your support over the last couple of blog posts has been very encouraging. I thank you for that. Writing always helps me feel better but I’m still nervous about being so open. The reason I keep doing it is because I’ve already been told that what I’m putting here is helping other people. Even if whatever I’m helping them with is unrelated to what I’m going through, they somehow felt empowered to make decisions or be open with their loved ones about their concerns. That’s a nice compliment. I’ll take it!

So thanks for reading again. I’m sure I’ll update in a few days after I’ve had some time to digest my thoughts on today’s appointments. I appreciate your support. Thanks for being here!

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Punched in the Feels

The first thing I must do is say THANK YOU for the extraordinary support given to me on my blog post from last week. I’m still blown away by the kindness and support. My last sentence of the blog was, “I hope I don’t regret this” and regret is the furthest thing possible. I received many Facebook comments and private messages, comments on here and even some new followers. Thank you!

Tomorrow morning I have my genetic counseling appointment at 9:30 a.m. and my new primary care doctor’s appointment at 11:00 a.m. In a weird way, I am both looking forward to and dreading these appointments. I’m worried about how I’ll feel afterward. Will I feel better about going? Yes. Will I feel better about my health and the upcoming medical “to-do” list that will follow these appointments? I’m not sure. I have to bring my mom’s BRCA test results to my genetic counseling appointment tomorrow. I thought it would be no big deal but when I got the email with the test results, I started crying. I felt like an idiot for crying about something I already knew was positive four years ago. I guess I looked at it, and it made me realize that soon enough it’ll be my BRCA test results I’m reading. I don’t know how to feel about that.

Empowerment is not what I’m feeling right now. Although some would say that’s what I should feel. What I should feel and what I really feel are two very different things. Trust me, I’d like to feel a certain way about things, too, but I don’t. Not yet, at least. I want to punch the voice inside my head that is telling me to get over it and stop worrying. The voice that’s telling me none of this is a big deal or anything to worry or be upset about. Maybe someone reading this feels that way too. I wish I felt that way, but instead I feel angry, scared and somehow I strangely feel alone.

I could see that when I told Mitch I felt alone it hurt his feelings. That’s not what I want. It’s not at all due to a lack of support from my friends and family. It’s hard to explain. I guess I just feel like none of my friends are having to deal with this shit right now. Not that I would want them to. I know that sounds like I’m feeling sorry for myself. I’m not. I’m not saying, “Poor Aubrey, why me???” And I do not wish this on anyone else. I guess I’m just nervous about being in uncharted territory. I’m nervous about facing this because no matter what the results are I really don’t know that I’ll feel any better or worse.

I read some blogs over the weekend that were super helpful. It made me feel like what’s going on in my mind isn’t anything new. It was almost weird to me that some people felt the same way I do. Not weird in a bad way, but I guess in a way that shows me I’m not walking through a door that has nobody on the other side. This isn’t making sense. It is in my head. Something that did make sense was written in a blog that I was referred to. It said something along the lines of, “Now that you know you’re BRCA positive it’s not an emergency. You were BRCA positive before, and you’ve been fine all along. No need to rush to any decisions now.” Right on. I liked that.

If the results are positive for the BRCA mutation, I think I know what I’ll do. A full hysterectomy would be the first thing I’d push for. I don’t think I’d elect to have a prophylactic double mastectomy since I’d be getting screenings every six months. It’s the cancer of the ovaries, uterus, endometrial lining and cervix that scare the shit out of me more than breast cancer. Not that breast cancer doesn’t scare me, but the “down there” cancer is a silent killer. No thank you. I’ve already had one aunt pass away from ovarian cancer. Not to mention I lost a coworker at the age of 25 to a rare ovarian cancer a few years ago. I’m not under any false hope that removing those parts would give me a clean bill of health the rest of my life. I know there is still risk, but for me, with my personal struggles and my family history it would make me feel 1,000% better to say sayonara, reproductive organs! Of course, this is all wrapped up in a beautiful bow here on this blog. Making the actual decision to do these things may make me feel differently once I know my results.

An ugly thought crossed my mind a few days ago. I felt bad for Mitch because he gets to deal with this with me. I guess he got the short end of the stick when the wife wagon came through. I bet he wished he didn’t pick me. Isn’t that an asshole thing to say? Sigh. It is, but I said it to myself because, well, I was being an asshole to myself. Of course, when I told him this he was very reassuring that he doesn’t feel that way at all. I know he doesn’t. It would just be nice for him to not have to worry about me.

I went to see Mockingjay with my mom on Saturday. Good flick, btw. Something that struck me about the movie was a line that I can refer to (and should be chanting without room for air) is the following…

“It’s the worst torture in the world, waiting when you know there is nothing else you can do.”

Yeah. No shit.

Something I realized today is that tomorrow is Giving Tuesday and tomorrow is my genetic counseling appointment. It got me thinking about the fact that had it not been for so many people donating to things like the 3-Day (an event in which I have heavily participated in since 2010), then we wouldn’t have things like BRCA testing. If this weren’t a thing then, I wouldn’t have the opportunity to have my risks measured scientifically. So here it comes, my shameless plug for donations. You knew it was coming, didn’t you? If you’d like to donate to my 2015 Philadelphia 3-Day fundraising efforts, please click this link. No amount is too big or too small. Each year there seems to be a new reason for me to walk. I’m tired of having reasons, but I’m thankful this testing is available to me and so many others.

Please think of me tomorrow morning if you have a chance. Say a prayer. Send good juju. Light a candle. Hold your cell phone up in a dark room and wave it around in the air (like you just don’t care, but please do care!) or whatever it is that you do. I’ll report back on here to share about how things went at my appointments.

Thanks for reading, and I welcome positive feedback!
Aubrey