I am a mutant
Today marks one year since my second cancer prevention surgery. I am sharing this blog in hopes that one day it might be the meaningful search that another woman lands on providing her with the insight that she is seeking. Also, I want to normalize women’s health by talking about it. Also, writing is cathartic for me, duh.
During the start of the pandemic, at age 42, I learned that I am BRCA2+. This means I have a genetic mutation that predisposes me to breast, ovarian, pancreatic, and skin cancer. Upon receiving that news, I quickly learned that I had 3 options. First, monitor my breasts every 6 months for the rest of my life and have a shot at early detection. Second, get a mastectomy (breast tissue removal). Third, get my ovaries removed (oophorectomy) by the age of 45 because there is no good screening for ovarian cancer.
I interpreted these options as “wait for cancer to find me” or “don’t give cancer a chance to find me”. Let’s see what’s behind door number two, Bob.
About three months before my mutation was discovered, my big sister learned that she is also BRCA2+. Her choices and actions made my decisions easy, do what she did. She’s always been a road map for big things in my life, why wouldn’t I follow along. And so I did. Mutants unite!
Over the course of 11 weeks, I had a mastectomy with reconstruction and an oophorectomy. Both surgeries went off without a hitch and my recovery was swift. I was empowered that I was now facing life without a ticking time bomb in my body. My risk of ovarian cancer is now zero and my risk of breast cancer is now extremely low.
And then the reality of these surgeries hit me. More to the point, life without ovaries hit me. I’m talking about menopause, like overnight, full-blown, menopause. My body is extremely different, it feels different, it acts differently and this is hard. In all my pre and post-op digging, there was no google search to answer “effects of ovary removal when your hormones are still going at full blast” or “surgical menopause and life after when you aren’t peri or post-menopausal”. My team of gynecological oncologists + breast surgeons were all women. They told me that if I felt the effects of menopause I could do hormone replacement therapy (HRT) because I’m no longer at risk for breast and ovarian cancer since they have all been removed. Great, I can take a pill (or a patch) and feel good. Done. Spoiler, I am on HRT but it is not the answer to a lot of what ails me, and thus begins the list of mismanaged expectations.
So, why am I writing this? Because maybe some magical google search will lead another woman to this and she might be a little better prepared than I was. I’m writing the blog I wish I had come across while googling like mad. A while ago I wrote about our experience in the world of fertility and how we shifted from a couple that wanted a baby to a couple that consciously decided to stop trying and embrace life without children. I could never find a couple like us, women like me, so I wrote a blog that I would have wanted to read. Here I am, doing that again now but about surgical menopause for other women who were “drinking out of the firehouse of hormones and then had them shut off all at once”, as one of my physicians put it.
I am not an expert in gynecology or women’s health, nor do I claim to be. I am merely experiencing something and it feels important to share. A million years ago that same big sister of mine taught me that life is all about expectation management. To be honest, I felt and still feel extremely mismanaged to face life without ovaries. Maybe my experience and this cautionary tale will help another woman.
To be clear, given hindsight, I would not change my decisions at all. I am still extremely lucky and empowered to be able to take my health into my own hands.
When I researched (obviously I mean just Googled) surgical menopause and/or menopause, I’d often find the same list of symptoms to expect: hot flashes, dryness, brain fog. Sure, those things are real, so very real, but I truly feel like there are a few more symptoms that weigh heavier on me, and, at the end of the day, it all comes down to grief and loss of a body that I once knew. I’d like to put grief at the top of the list, actually. Maybe it’s different if you experience menopause over the course of many years like most women will. I don’t know because that’s not my experience, but for me, and my sister, the grief is very real.
I’d like to add to that list: grief, full-body aches, body compositions changes, memory loss (different than brain fog), libido death. These are the ones that sting, hurt and contribute to loss more so than a hot flash (but wow are those real and can really impact your life) or some dryness. For me, HRT has helped with hot flashes and full-body aches, but nothing else.
So here is my take on that list and, while I believe grief should be at the top of the list, I’m saving it for the end.
Full Body Aches: A few months after the oophorectomy I noticed that my body hurt all over. Rolling over in bed and getting up from a chair felt like I had just run a marathon. My muscles and my joints were killing me. I had always felt like I had just done a one-rep max. I was able to ride and run but everything hurt all the time. We had just moved to Vermont and I found myself looking into Lyme Disease, Lupus, and working with a nutritionist to help with this massive discomfort. I’d find out later that this is actually a symptom of menopause, but it took me asking several experts before someone validated that it is very real and part of the process. Thankfully HRT completely fixed it but it highlights my point. Where was the expectation management that this is a possible symptom. Hello?
Body Composition Changes: Oh boy. What can I say other than, almost overnight my skin didn’t fit my body anymore. My muscles disappeared, my skin became saggy. I think people call it crepey and it resembles something you might see on your grandmother, not a 42 yr old. The natural tone in my arms was/is gone. And the hardest part is that it’s now very difficult to gain muscle. It’s a fact and I have learned about the science of muscles and the effects of estrogen, or lack thereof. Building lean muscle in menopause is hard. It’s possible but it’s harder and very different from what I’ve known in the past, both as the person inhabiting this body and as a physical therapist + personal trainer. And for someone that has spent a lifetime with body image issues, this is a big hurdle to overcome and brings up a lot of old stuff that I have worked hard to put in a box, on a shelf, with a lid.
Memory Loss: This is different than brain fog. I’d describe brain fog as that feeling like you’re a little stoned or a little overtired and not quite as sharp as you once were. This phase seems to subside over time. This memory loss I am referring to is more like a loss of consciousness or maybe a brain injury. My husband lovingly commented on his concern that I seem to be acting like I had a head injury. That didn’t land well at the time, but I now completely understand what he meant. There are about four months from this past winter that I simply do not remember. During that time I made plans to meet up with friends, plans for an anniversary weekend, and we bought a house, most of which I don’t remember doing. I can’t remember the terms of our loan because I almost don’t remember getting it. As the person who has always been the admin/CEO/CFO of our family, this has been hard to accept. I’m much better now, but Jon has had to remind me of the details about our house, our land, our taxes. He has found himself in more of the admin role, which is really not how we have organized our life. Talk about an unexpected outcome. I’m so grateful that Jon could take up the slack. Our roles are more restored now, but I still lean on him more than I have about the details of our little family business and org chart. Add loss/change of role to the grief column, please.
That level of memory loss is much better but I am undeniably more forgetful and flighty than I ever was before. I am not someone who loses things and I have very practical systems for my belongings. As I type, I cannot find my glasses and I lost my heart rate strap about a month ago and it’s just gone. These things were not typical of my behavior prior to losing my ovaries and they are things that make this type-A, highly organized human lose sleep at night.
Death of Libido: Out of respect for my husband and the privacy of our life, I am not getting into detail on this one. I am extremely fortunate to have a loving and committed partner who is weathering this storm right along with me. I do, however, want to acknowledge that it is real and it is not talked about enough and there are zero tools provided. As I mentioned, my entire surgical team is comprised of women and not one of them mentioned this possible outcome or offered resources (books, counseling, etc). I have found resources and I have asked for help and for that I am grateful, but this is a huge contributor to the overall grief. In addition to losing ovaries and hormones, a mastectomy leaves a women’s chest completely numb. So yea, let’s recognize the very real grief when your physical body responds differently than it once did. This is sad. This is hard. And, while there are tools and help out there, most of the time the thought of “fixing” it makes me mad and exhausted.
Grief: Need I say more than I already have? I have dealt with grief before, or rather, I deal with grief now (as I’m not convinced we ever move on from it). This is currently my favorite visual to explain the process and how I have and will cope with it.
In conclusion, cancer sucks. Cancer prevention is a privilege and it is hard. Actually having cancer and treating it, also extremely difficult and I am not here to talk about that journey because I have not right to. Everything about cancer is difficult.
I am able to ride my bike, explore Vermont, make new friends and hold a job, be a dog mom, be a wife, visit our families and move my body in all the ways I enjoy. I take none of that for granted. NONE OF IT. However, in parallel to that, I want to acknowledge the difficulty of menopause. Given my age, now 43, many of my friends are entering that extremely confusing world of peri-menopause. I don’t even know what that means and I don’t understand the journey they are facing but if my insight can be of any service to them or other pre-menopausal women facing an oophorectomy, so be it
Advice for other women in my shoes:
Ask a lot of questions about all the possible symptoms of menopause.
Gather resources before surgery so that when symptoms arise, you can have somewhere to turn. Having resources at your fingertips will help you save energy when you are in the throes of a gigantic physical shift.
Learn about maintaining and building lean muscle mass so you can start early in preparation and understand how to move and load your body after surgery to prevent rapid loss of muscle.
Talk about it with other women. Sometimes I feel like I talk about it too much but if I didn’t I’d be hiding this very real part of my daily existence.
Menopause is currently the third person in our marriage and is this strange little lurking shadow next to me all the time demanding my attention. I write this today on the anniversary of my second surgery as a way to move forward. I have spent a year complaining. I’m not saying that I’m done complaining, but I’m going to focus more on acknowledging this strange little lurking creature called menopause. I’m going to acknowledge it and do what I can to put to use the things I have learned. I am going to use the data I have collected and the science I have embraced to make this strange lurking creature more of an ally, rather than an enemy because it’s not going anywhere. Maybe this bit of writing is my way to hold myself accountable. Feels right.
There’s no way to wrap this tale up with a neat little bow. I simply hope it will help someone else. And like all the musings I share on this site, I have learned, processed, and shifted as a result of writing this all to share. I also want this to be a love note to my husband, a very strange and awkward love note for his kindness, patience, and understanding. Every year on our anniversary we re-read our wedding vows, perhaps I will add “with and without ovaries” to our “in sickness and in health” clause. Go forth and be… informed, I guess.
