So, I’m having a double mastectomy in two weeks.
Is everything okay? (Yes, I’m healthy. No cancer. Praise the Lord.) What about everything going on with Thomas? When did you decide this? Why? Wait, what is a double mastectomy? What does recovery look like? Will you have reconstruction done? How are you feeling about all this? Are you scared? Will you blog about your journey? How can I help?
These are just a few of the usual questions I’ve received as we’ve told our friends and family the past few months. I had finally worked up the courage to hit “publish” on this post several weeks ago, but then everything happened with Thomas and I didn’t want the seriousness of his situation to get buried under my upcoming surgery. Much to your surprise, I’ve actually been on this breast cancer prevention journey for quite some time now and this surgery has been planned since before Thomas was born (more on all of that below).
So anyway, I will attempt to cover all of those above questions and much more than you probably want to know about my boobs in this post. My hope in blogging my way through this experience is threefold: 1. To spread awareness and remind the ladies to check their tatas and get the genetic testing (BRCA1/BRCA2) done if breast cancer runs in your family! 2. Through this experience I’ve discovered it’s been somewhat difficult finding other women (especially moms with little kids) my age going through this so I hope to help someone else out there facing this big decision and crazy journey not feel so alone. Because I definitely feel alone at times even though I have the strongest support system, an amazing husband, wonderful friends, cheerleaders and more prayers than I could ever imagine coming my way. For all of that, I am extremely grateful. But until you’ve been faced with this decision, this journey, you can’t relate in certain ways and that is where you can begin to feel alone. And 3. Blogging is therapeutic for me and I’ve found so much encouragement from this wonderful community during some of the hardest times in my life. I debated whether or not I would share this journey I’ve been on for
awhile now on the blog but with so much love and support we’ve received
from you all, it felt weird hiding such a big life event from you. Plus,
I wanted to explain my upcoming blog absence during my recovery.You know me, I tend to be an oversharer, so I don’t mind blogging about my boobs. Sorry, no pictures included!
Okay, on to the details…
A little background. My mother, Caroline, lost her battle to breast cancer at the all-too-young age of 30, leaving behind a devastated husband and two little girls. Her mother lost her battle to breast cancer in her early 30’s as well. So I have been aggressively monitoring my cancer risk since I was 19 years old with annual and quarterly tests including 4-D mammograms, genetic tests, MRI’s, breast exams and more. Over the past decade I’ve been poked, scanned and tested more times than I care to count in an attempt to stay on top of my genetic predisposition to breast cancer.
Given my breast cancer risk, I’ve known this procedure was inevitable it was just a matter of when. For the longest time I felt invincible, protected by age I guess. However, as I quickly approach the age of my mom’s diagnosis my doctor’s concern has grown exponentially. Due to the aggressive nature of my mom’s cancer (she passed 6 months after diagnosis) my doctor carefully monitored me during my pregnancy with Thomas. I lived in fear (and had many nightmares) that I would get breast cancer during my pregnancy and would not be able to treat it until after he was born.
During this time my team of doctors used a very conservative risk model to calculate my chances of breast cancer – 40%. Each year that number rises significantly. I don’t know about you, but when the weatherman says there’s a 40% chance of rain I carry my umbrella! I am the complete opposite of a risk-taker!
The decision. I decided to move forward with the procedure when we were home in Florida earlier this year to celebrate Mother’s Day. My mom found my baby book while cleaning out the attic and gave it to me. It was chock full of details I’d never known about myself – my birth weight, my first birthday party theme, a list of guests who attended my baptism, a locket of hair from my first haircut, an explanation of the scar across my hairline that I’ve always wondered about (teeter totter accident) and so much more. I am beyond grateful she kept such a meticulous diary of my and my sister’s lives. When I turned to the “first day of Kindergarten” page I lost it. Blank.
That night I laid awake thinking about the blank pages. I was five and Lindsey was three when Caroline died. There have been so many significant moments in my life that I’ve thought about what it would be like if she were present – losing my first tooth, my first breakup, prom, high school and college graduations, bid day, my engagement, my wedding, my pregnancies, meeting her grandbabies and so much more. That night I decided to no longer to let fear win. Matt and I made the decision right then that I was going to have a prophylactic bilateral mastectomy. And soon after Thomas was born.
|Caroline — before diagnosis|
The options. Matt and I prayed, researched and discussed all the options with my doctors which range from aggressive prevention to early detection followed by treatment. My dad is currently battling stage 3 lung, brain, spine and adrenal gland cancer and my second (amazing) mom fought breast cancer last year too. I’ve seen firsthand how harsh the treatment of cancer can be on everyone involved and I wanted none of that for my family, especially my rock, Matt. With all of this considered the decision to have a preventative double mastectomy was easy.
I’m a little scared. Okay, maybe a lot scared. To be completely honest, there are many days that my emotions quickly ricochet from strong and positive to sad and worried. I really try to keep my best poker face in front of my friends and family but the truth is I have a lot of silent freak outs and breakdowns. During these difficult days I worry about things like…not having the option to breastfeed any future children I might have. Losing all of the feeling in my chest – forever. Matt having to take care of all of us for awhile. Not being able to care for my babies (especially with Thomas’ contacts) during recovery. More medical bills. How will I handle the pain? I’m totally freaked out about the surgical drains and tissue expanders. Will I be self-conscious after reconstruction? It’s easy to fall into a rabbit hole of worry.
But I’m grateful. Overall I feel incredibly blessed to have this rare opportunity to fight back before cancer can even begin. If my mother would have had this opportunity, I know she’d still be alive. And I know she would be proud of me for making this brave decision (especially during a time that we have so much going on). By choosing this surgery I am proactively reducing my breast cancer risk down to 1%. I can’t wait to get past this surgery and never again have to live in fear of test results every six months. Or fight the breast cancer battle. I’ll be around to watch my kids grow. And watch their kids grow. Celebrate our 50th wedding anniversary. And enjoy senior citizen discounts.
Lots more of my previvor journey to come…