So yesterday was the big day. I bid farewell to my ovaries and tubes, and greatly diminished my risk of ovarian cancer once and for all. I plan on doing periodic recaps about the experience and how my recovery is going. I scoured the internet before surgery reading firsthand experiences to help prepare myself for what to expect, so I’m hoping my sharing this may help someone else doing the same. So here it is, the recap of my BSO surgery day.
Your mommy is having surgery soon. Since you are too small right now to understand what is going on, I am writing this for you to read some day in the future.
There are some pieces of my body, called ovaries, that I need to have removed because there’s a good chance that in the future they will make me sick. Ovaries are what made my mom (your grandmother) sick, and why you never had a chance to know her. I don’t want that to happen to me. I want you to be able to have your Mommy around for a very very long time.
I believe that everything will go smoothly during my surgery, because my doctor is smart and very good at his job. But after this surgery, I will have some boo-boos on my tummy, and I won’t be able to pick you up for two long weeks. You are very lucky to have many people who love you SO SO SO much who can help me take care of you while my boo-boos are healing. Daddy, PopPop & Abuela, Granny, and V* are all going to come over to play with you. And even though I wont be able to pick you up, we can still snuggle and read books together and maybe even watch a movie. 🙂
Surgery is a scary thing. But I am trying to be brave because of you. I’m doing this now because I want to stick around for you, to be by your side as you grow up. I need to do everything I can to keep myself healthy because I love you SO SO SO much and you deserve to have a healthy mommy.
You are the most important thing in the world to me and the light in my life. Your silly sense of humor, boundless energy, sweet loving nature, and brilliant little mind have made you my absolute favorite person in the world. No matter what happens to me now or in the future, I hope you can always know that this is true: I love you so incredibly deeply and feel so very lucky to be more you Mama.
Thank you for being my everything and my reason for living. I love you with all my heart.
In one week I go under the knife for my first BRCA-related surgery. In one week my ovaries and fallopian tubes will be removed from my body. In one week I will forever lose the ability to have another biological child. In one week I will throw my body into surgical menopause.
In one week I will have a greatly lessened risk of ovarian cancer.
And how am I feeling? Anxious and scared mostly.
I’m really scared about going under anesthesia. I’ve only been fully under once before in my adult life (during shoulder surgery in 2014)…and I was totally freaked out about it then too. I’m scared that something could go wrong during surgery. I’m scared that the menopause symptoms won’t be manageable or that for some reason I won’t be able to do hormone replacement. I’m scared that they’ll find pathology. I’m also scared of the pain being worse than I expect it to be and scared that I won’t be able to go back to work 6 days after surgery as I’ve planned to.
I’m coping with all of this fear and anxiety by trying to be as prepared as possible…because that’s what I do.
This are officially getting real. I have the date set for my first BRCA-related surgery. On 1/16/18 I will be getting my BSO…saying farewell to my ovaries and tubes. And I’m meeting with a new breast surgeon this week and hope that I can get a date set for my mastectomy and reconstruction this spring.
As these surgeries are moving more from the abstract to reality I am starting to feel the loss of it all in a new way. While I have no doubt that this surgery is the right choice for me…I still have that nagging doubt in my mind saying “Is now the right time?” I know logically that this voice comes from my fear and my sadness. The deep sense of loss I feel knowing I will never have another biological child. The fear I have about all of the ways that surgical menopause could impact my body. The sadness that comes with the sense that I am disappointing people…my spouse, our families, by choosing not to try for another baby. When I let myself truly feel all of that, it really fucking hurts.
Most days lately I feel like all I can manage is to not suck at my job and not suck as a parent. Anything beyond that is out of reach. I’ve neglected friendships, been a less-than-ideal partner, isolated myself, stepped back from hobbies, and passions, and the things that make me feel like a whole human. Then there are other days, good days, when I want to cook an nice dinner, take a walk around the neighborhood, and read a book…or maybe even go to the gym, or yoga, or make some music. I try to enjoy those days when I have them but accept that when I feel like I can’t…it’s not because I’m a failure or because I don’t care…it’s because there is just too fucking much going on right now that I’m trying to manage. Scheduling surgeries. Mourning a pregnancy loss. Mourning the future children that I will not have. Imagining my body cut open, where my scars will be, the body parts that will be removed. Coping with my stressful and emotionally draining job. Parenting a toddler. Researching adoption. Living in a torn up, half unusable house.
If that all sounds a tad dramatic…I’m not trying to have a pity party or live in a woe-is-me sea of despair over here. I’m just trying to be real with myself about where I’m at and how I’m feeling…and give myself some freedom to not be 100% of top of my shit right now. Because if I really AM being honest, the last 6 months have probably been the hardest and saddest of my life.
Obviously, my genetic make up has been on my mind a lot these last 6 months…mostly in a way that makes me feel deficient, defective, and doomed.
But BRCA1 is just one of about 20,000 genes that form who I am. And it does not define me. While there are undoubtedly other defects and flaws existing, not yet identified, within my 23 pairs of chromosomes…there is also coding that makes me strong, smart, and talented.
I did genetic profiling through 23andMe about 4 years ago, and found out some marginally interesting things about my health risks and ancestry (but not my BRCA status). However, I’ve recently been playing around more with some of the third party tools that analyze the raw data from 23andMe and provide a far greater level of detail.
In these explorations I’ve focused primarily on health and wellness-related genetic indicators as this is something that has always interested me. I’ve been exploring ways to live the healthiest life I can for more than a decade…experimenting with modes of exercise and eating to see how they change the way I feel. Learning a bit about how my unique genetic make up may impact my response to things like exercise and food choices seems like a timely next step in this process for me.
So here is what I learned and what I am going to do with this knowledge (specific gene variations indicated in parentheses). Note: this is probably interesting to very few people other than me and maybe those curious about genetics:
My birthday was earlier this week. Number 34. Sort of like the turning of a calendar year, the beginning of a new year of life sets the stage for some serious self-reflection.
33 was not a great year for me. Certainly some wonderful things happened — I watched my baby grow into a full-blow toddler (who is happy, healthy, and amazing). I got back into a solid strength training routine for the first time in a few years. I passed my licensing exam, opening up new doors for my in my career. And I am immensely grateful for all of this.
But it has also been a year of tremendous sadness and loss. And I will probably primarily remember it as such.
Some days go by and I feel fine. Some even feel good, peaceful. On those days I can imagine my revised future and feel hopeful and happy. I can feel grateful for the family I have and excited at the prospect of expanding it further through adoption.
Other days I am overcome with sadness intersected sharply with pangs of self-doubt. I mourn the two lives-in-the-making I lost via miscarriage and ectopic pregnancy, and I mourn the future biological children I will not have. I feel like I have failed my spouse, my son, and my family. I have been so plagued by this feeling that I have not even had the guts to share this decision with my family yet (spouse excluded). I know they will be heartbroken.