Today was one hell of a day. Currently I feel like a zombie. I feel emotionally drained and extremely thankful. Thankful that she made it through her 5 & a half hour surgery. Thankful the doctors took their time and were thorough. And thankful for all the family and friends that have reached out to us. That have prayed for her and checked for updates and made sure we felt loved today and any day since this all began.
I feel scared and overwhelmed. Tomorrow is surgery day and while am incredibly grateful she can have surgery it is scary. We didn’t prepare for this. We tried to prepare for a no but we didn’t think about the yes. And while the surgery has been scheduled for 10am tomorrow that is pretty much the only thing we know.
We don’t know how long it will take or how long she will be in the hospital because the surgeon doesn’t know. He can only tell so much from a CT scan and said he won’t know how extensive the surgery will be until he opens her up. Which isn’t super reassuring but my parents said he seemed positive when he spoke to them, which is good.
Today didn’t feel real. Today is my parents 31st wedding anniversary and they’re really staying true to that whole sick and health vow. They spent the day together bouncing around from pre op appointment to pre op appointment. My siblings and I sat in the waiting room when she met with her doctor to get the final word. A nurse told her we looked very nervous in the waiting room. We were. So I will just cling to my guardian of strength bracelet extra tight tonight as my mom goes into battle tomorrow.
When they say two weeks do they mean two weeks from the exact day. Or is it more of an estimation. These are life changing results so I wish they would be more specific. Because today is two weeks since my genetic counseling appointment and I would really like to just know. I want to rip the band aid off and know if I have this gene mutation. I’d like to just get the show on the road and do whatever needs to be done to prevent getting cancer. Because I can’t wonder for another second. I’ve had enough wondering. It’s bad enough having to wonder if your mom can get surgery. Waiting waiting waiting that’s all we can do. Blah.
*UPDATE* on September 29th I received the call that I did not have the BRCA2 mutation
We are standing at a fork in the road. One path is surgery and the other is this stupid thing is inoperable. Either way after this week life changes again. Oh how I despise change.
The big scan is here. I remember walking into my parents house about a week after chemo starting and my mom telling me the hospital called and scheduled a scan and surgery. My stomach dropped but it felt far away then. I wrote the dates down and it’s been in the back of my head popping in when people would ask how she was doing. My reply always included we should know more after her scan on September 26th.
We as a family have been planning for the results of the scan. Analyzing different scenarios. Like if it’s inoperable. Would they call? They wouldn’t make her do pre op, would they? Wouldn’t that be expensive? What are our work schedules on Wednesday? Who will ride with who? If she has surgery will it be the second one of the day? How long will surgery take? How long will she be in the hospital? We are playing guessing games down to the hour of surgery. Why…probably because we are a bunch of control freaks and probably because we are 5 people that were blindsided 3 months ago and so we want to be prepared. So now we wait…
The band is why the 3 of us exist. When my parents were in their early 20s they both traveled to Daytona Beach, FL for spring break. My mom traveling with a group of girlfriends and my dad band with his band. Somewhere along the way they crossed paths and it turned out they were both from Ohio. Eventually they began dating, fell in love and had 3 wonderful children. My siblings and I grew up listening to the band. We would go to festivals and watch them play. We would get brought up on stage to sing when they played Brown Eyed Girl. There are about 20 songs from the 80s & 90s that I have no idea who truly sings them. But whenever one of those songs come on the radio I always think of the band.
Tonight the 8 of us (my parents, my siblings, my husband, my sister’s husband and Julian) went and watched the band. Well 7 of us watched. My brother actually played the guitar and was a member of the band for the evening. It was strange yet comforting. Strange in the sense we have spent a majority of our time together confined to my parents house for the past couple months so venturing out is such a different experience lately. And it was comforting because we were outside listening to voices we’ve heard sing songs a million times. I find now I look for the comfort in things like this. In the familiar places that bring me back to my childhood when life was just a simpler time and we were just 3 kids listening to their dad’s band.
I am not an athlete by any means (that’s a whole other blog). But I can’t help but feel like next week is our bye week before the big game aka surgery. On June 24th she was diagnosed and from that day on it has been go go go. Appointments and chemo and unexpected things every week. It’s like every week was another game and every week she has given it her all and kicked ass. And we have just kind of been her cheerleaders on the sidelines trying to root her on.
Today we found out next week there is nothing. She was suppose to have an appointment Monday but they canceled it because there wasn’t anything new to discuss. So for the next 10 days maybe we can just kind of be people. For the next week maybe we can all take a deep breath and not think as much. And maybe, just maybe, she will have some energy and finally paint that damn crown molding she keeps talking about.
*SIDE NOTE* She was laying in a hospital bed on June 25th, with an IV in her arm, hadn’t eaten in over 24 hrs and just found out she had cancer and she says “I just want to feel better so I can paint the crown molding” and we all just laughed.
Today I woke up to text from mom with her latest CA125 levels. They’re dropping. Which is good and amazing. When I read the number I was taken aback. See we’ve been planning for the worst because we didn’t want to be blind sided. So we kept saying ok if the number is the same or went up we will be ok. We didn’t prepare for it going down. And I felt like I total weirdo for kind of just being shocked and then my sister texted me and she felt the same way. It’s like we were checking in with each other asking if it’s ok to be hopeful. So hello hope…it’s nice to see you again.
Everyday when I pick up Julian from school two things happen: he yells “my mommy’s here” and then he asks “we going to Mimi’s house?”. And then as long as she’s feeling up to it we head to my parents house. Today was extra exciting for him because my mom had decorated the inside for Halloween. And just like his Mimi this kid is obsessed with Halloween. He grabbed my hand and took me throughout the house pointing out every decoration and then he did the same to my mom, dad & brother. He is truly our light in all of this. He finds joy in the simplest things and I am beyond grateful that I am his momma. So today was a good day. My mom felt good enough to decorate and she made Julian the happiest kid in the world.
I should be walking into work right now. But I’m not. I’m just sitting in my car. Today is her last day of chemo for this course. Today is my blood test and genetic counseling appointment. I know what to expect and honestly nothing is going to happen today. Except I give my family history, they’ll give me some odds and then I’ll get my blood taken. But honestly I have no desire to leave my car. The sun is shining and country music is playing. It’s quite lovely.
**UPDATE** I did get out of my car and go to work. And now I’m just sitting at my desk waiting. Waiting to go to this appointment. This is literally the simplest thing and I won’t even be getting results today and I don’t even have cancer. But when I went to my mom’s genetic counseling appointment with her the gene was a hypothetical. We THOUGHT she had it based on her age when diagnosed with breast cancer and the fact that she had breast and ovarian. But we didn’t KNOW…we didn’t know which BRCA gene. And now we know. So now they can give me very specific statistics based on this gene. And it’s weird and my appointment is at the Cancer Institute because that’s where they had an opening and I don’t have cancer and I feel super dramatic but the whole thing is weird and strange and odd and weird.
**UPDATE** Everyone at the Cancer Institute was incredibly kind. The receptionist that checked me in asked how are you? And she was incredibly sincere when she asked. It was such a comfort. The genetic counselor explained everything really well. I have a 50% chance of getting the BRCA2 gene. If I have the gene mutation screening and surgical options were discussed in order to reduce my risk of getting breast and/or ovarian cancer. It made me feel a lot better knowing I could be proactive about my health and that I can take control in some sort of way. So it’s a flip of a coin and in two weeks I will know.
I’m sitting here at Au Bon Pain. Maroon 5 is playing over the speakers and I’m just in a daze. I thought I would feel different and I just feel weird. My mom has the BRCA2 mutation. I have looked up data on these mutations a million times over the past decade and she tells me this and my mind goes blank. My sister texts me asking what it means and I had to google it. I couldn’t remember other than its a mutation in BRCA2 and it increases the risk of breast and ovarian cancer as well as a few others. And now I’m just sitting here listening to music starring into space. I literally feel nothing. But I will say this if you’re going to get one of the BRCA genes this is the better one statistically soooo yay?!