Today marks three years to the day since my prophylactic double mastectomy. In that time, I have had many opportunities for reflection. So today, with all that I know now, I write this to her. . . to the girl who said yes to a double mastectomy.
To the girl preparing for her surgery:
It’s okay to be afraid, especially if this is your first major surgery. It’s okay not to want to talk about it. But I also encourage you to find a really great community of people. Ones that will lift you up and encourage you no matter the circumstances. It’s okay if they don’t have a similar or shared experience with you, sometimes all that is required is empathy. Include your partner, your spouse, family members and close friends in what you are going through. They are struggling too.
To the girl in recovery:
Grace. Give yourself lots of grace. Your body is about to enter a new normal. Healing is not a linear process. There will be highs and lows both mentally and physically as you learn to love your new self. You will have new limitations that you didn’t have before. Your body will have a new look and new scars. Embrace that. Recognize that the body is amazing at healing itself, but you need to give it time and the resources for it to do that well. That means eating right, getting plenty of rest and not overdoing it in the early stages. Don’t be discouraged if it takes you a while. It is a process and every day is a new day. Just take your time and I promise you will get there.
To the girl one year out:
Your chest is now healed, but you have a new scar, this time from a C-section. Your body has been through quite a lot in one year. It’s okay that your chest looks and feels different to you. It’s okay to be frustrated that bras and swimsuits feel different than before. But you are able to move and participate in things that you couldn’t a year ago and that is a huge milestone. There is the occasional movement or sharp pain that is a constant reminder of the decision you made. It’s normal to wonder if you are truly saved from your fate. It’s normal to grieve for those who didn’t get to make the same choices and wonder why they couldn’t be saved.
To the girl two years out:
Your body is now healed, and your new normal is here to stay. Bras and swimsuits aren’t as a big of deal now that you know what you like and what doesn’t feel comfortable. It’s okay to feel awkward at times because technically you are a “previvor” and never actually diagnosed with cancer. It’s okay not to love your body all of the time, even though you made this life changing decision to avoid cancer and family members and friends weren’t so lucky. It’s okay to be angry about having this weight put on you in the first place. It’s helpful to talk to others about your journey. It’s rewarding to help other women who are struggling with this same decision or who are looking for resources and knowledge.
To the girl three years out:
You continue to pay attention to your body, you don’t take any chances or take anything for granted. You get surveillance done every 6 months because you understand this genetic mutation is forever and while surgery certainly helps lower the risk, it is by no means a cure. You stay up to date on the research and try your best not to get overwhelmed with other risks looming in the background. You pass on your recovery clothes, packing lists and any thing else you can think of to those in need. You get mad as hell when someone new is diagnosed with breast cancer and you feel completely helpless, because although there has been some progress made, there is still so much research needed to save these precious women. You play with your child, you let him wrestle with you and snuggle on your chest. You hold him tight for every moment others can’t and for all the times you can’t hug your own mother because of this terrible disease. You know you will have another surgery in the future to remove the risk of ovarian cancer, the double mastectomy was just one hurdle in the race. You are learning to slow down and appreciate time spent with the people that matter most because that time is precious and something you never get back. You know that having BRCA 1 will never define who you are as a woman, daughter, wife or mother, but it has definitely shaped your journey and you are better for it. You are more determined than ever to leave your mark on this world and make a difference.
Sincerely,
