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.
Mimi’s House
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.
Heads or Tails?
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.
TGIF
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?!
Rise Up
A few weeks after her diagnosis I was watching The Espys. As I was watching they played a piece on Craig Sager and his battle with leukemia before he received the Jimmy V Perseverance Award. While they were telling his story a woman’s voice began to sing, “you’re broken down and tired of living life on a merry-go-round”. I immediately looked it up and it was Andra Day singing her song Rise Up. As I listened to the lyrics I just began to cry.
I have listened to this song at least once a day since I first heard it. Sometimes belting the lyrics in my car feeling empowered. Other times sitting on the bathroom floor with my eyes closed and tears rolling down my face. It all just depends on what kind of day it has been. But one thing that remains the same every time I listen is the love I feel for my family when she sings “all we need is hope and for that we have each other”. I think of my parents and my siblings. I think of how incredibly lucky I am that we have each other.
Friday Night Dinners
Today was the second to last chemo for this course. Today was her first blood transfusion. But let’s not talk about that let’s talk about something fun (this is my moms phrase, I stole it). Let’s talk about Friday night dinners.
I’m not sure when we started having Friday night dinners. I may have been either a senior in high school or a freshman in college. But every Friday night all of us would come together and go to the Branding Iron for dinner. Throughout the years the restaurant would change, as would the number of us that could make it based on our different schedules.
Over the past couple months we have kind of reinstated the Friday night dinners but they have changed a bit. Instead of going out to eat we all go to my parents house and they order in. My sister has a very busy coaching schedule and it worked out Friday is the only night she has free. Last Friday was a memorable dinner. We ordered pizza and watched Harry Potter while sitting in my parents sunroom. And then we all took a quiz to see which house we would be sorted into. I got Slytherin. Dad got Ravenclaw. B got Gryffindor. Mom and Lex got Hufflepuff. It was a completely ordinary evening and that’s what made it so extraordinary.
Go Away September
Oh, September. I’ve never wanted a month to not exist more than September 2016. I’m sure September is a lovely month for someone else. Perhaps someone is celebrating a birthday or a wedding or a new job. But it is not an exciting month for us.
September is the month of the big scan and doctors appointments and BRCA results. September is decisions and planning and waiting and family meetings and more waiting. September is the ultimate roller coaster and I hate roller coasters. September blows. September felt far away when her scan was scheduled and now it’s here. Yes it could be good. Yes the tumors could’ve shrunk but even so I don’t think any of us are ready for what they might say. So you can go away now September. Oh and happy national ovarian cancer awareness month.
For A Moment
Last night my mom called me. Last night I thought as we were on the phone fuck there is going to be a day where my phone won’t ring anymore and say mom. And then I went back to listening to what she had to say because I can’t give any more of my time to that thought. Because if I really think about that and what all of this means it is unbearable. I had another moment like this during the 4th of July weekend right after we found out. We were at the drive in and sitting in the back of the SUV just talking. Chemo hadn’t started, we had only known for a week. And I just looked at her and thought there is going to be a day when I can’t do this. I know that all this could work and she could have some good years ahead. But I also know none of us live forever. So there will be a time when we will say goodbye. 
I told her the other day she could live til 80 and I would still be devastated because she is my mom. She is the one I talk to about the big and little things. She is the one that keeps me in check. I’m almost 30 and she asks me if I’m doing my laundry because she knows I’m a messy slob. No matter how many times I tell her I’m a grown up she still pushes me because she knows I’m capable of more even if it just means a clean house. She is the one I talk about reality shows with. My sister doesn’t watch the housewives but my mom does. So I can go over my parents and we will both be like ok did you watch orange county last night and then we will discuss every ones behavior. So ya I can’t devote more than a moment to these thoughts because it just totally and completely sucks.
Research
Today marks the first day of Cycle 3. The last double dose before scans. A cycle is 21 days. She has to complete 3 cycles before her CT scan so 9 weeks of chemotherapy. I remember when we found out and a doctor came in and told us about cycles so I asked what is a cycle? A she told me 21 days and I was so confused thinking 21 days in a row of chemo.
So I started reading scientific papers and learned some of the chemotherapy lingo. I have read scientific papers on CA 125 levels and what they mean. I have read papers about neoadjuvant chemotherapy which is chemotherapy given before surgery in order to shrink tumors.
What are the statistics? What are the odds? What are her chances? Desperately looking for an answer of hope or perhaps knowledge to soften the blow. I have read all of this research and I have come to my own conclusion who the hell really knows. There are so many things that could go wrong and there are so many things that could go right. The human body is a crazy crazy thing. Last week white blood cells were low and we thought for sure there is no way she would be able to get chemo today. Well today they are back up and she is getting that final double dose. My mom doesn’t fit in that box. She is not simply a statistic. My mother is resilient.
Normalcy
Tonight we sat in a gym and watched my sister coach her volleyball team. I don’t think I could think of a more normal scenario for my family if I tried. See for a chunk of time volleyball was our life. And while my sister was the one that played, it was a part of us all.
During summertime my brother and I would shag balls while she practiced in the yard. She worked on her vertical in the garage trying to hit a tennis ball. Our weekends were spent watching her play Junior Olympic volleyball. The night before was a subway run and trailmix making. I remember the sound of the espresso machine as my dad would head with her first thing in the morning so she could practice serving. My mom, brother and I would follow behind. We were a well oiled volleyball machine.
Her high school career ended after an injury but she picked it back up when she was in college. So tonight we were just a family watching a volleyball game which is a nice change of pace (minus my brother who showed up as the second game had ended).
Diary Of A Daughter Blog 