Every Sunday, I try to attend my version of church, yoga on the deck at the Pour House, a Charleston music venue. Our teacher, Kate, shares messages throughout the hour-long practice and since I’ve been attending for a while now, some have stuck. The one that gets me every time is:
SHARE YOUR STORY
Why do I share my story? It’s a story that might feel too personal for some, too icky to think about, too scary to imagine, or just plain uncomfortable. But in sharing my story, I’m helping others; past, present, and future.
Since I shared a public post on social media in December of 2017, people have reached out from various walks of my life:
“I’m having the genetic testing done and it makes me want to puke, I’m so nervous”
“I could use some advice from you. One friends has been fighting breast cancer and is getting a mastectomy tomorrow. Do you have any tips you can share that might be helpful for her recovery?”
"My mom had breast cancer, BRCA is not relevant, and her age when diagnosed, and my current age makes thing different. But I’m here for you should you need me. Courage, my friend. You have it in spades, but a little more never hurts. Hug that boy of yours for me."
And I respond. Quickly. Likely with more feeling or descriptives than most people will expect to receive, but I put myself out there to be open, honest, and help others.
Let’s start with what I shared the day before my first surgery:
December 27, 2017 // 34 years old
Fair warning: This post is about breasts and about as real life as it gets.
A decade ago, my mom was diagnosed with breast cancer. Because of her journey with cancer, that ultimately took her life, and other family history, I have always been proactive with my health. Doctors estimate my risk for breast cancer around 40% (without the BRCA genes) while the average US woman’s risk is 12%. My plan was to breastfeed Grant and then get these death knockers removed. The past couple of months, I’ve met with doctors and worked with insurance to get my prophylactic bilateral mastectomy scheduled for tomorrow. This is where I ask you to consult Google. It should be very clear to you- this is not a boob job. In fact, I’m personally choosing another reconstruction option entirely because my choice is to not deal with the maintenance of implants. The several week recovery that comes with this surgery alone is enough for me. I am privileged to have the opportunity to reduce my risk of breast cancer to 1-3%. Without insurance, this surgery would cost over $200,000. So, why am I sharing this? 1) I don’t want to go through this alone. I want to talk about it, be open with my experience, and be here for others if they or someone they know goes through it. 2) I have to give my husband and Grant’s Poppy & Yaya (Barry & Pam) a shout out. Without them, I’m not sure I’d have the courage or support to go through this. 3) I know you guys have some good TV and podcast recommendations (my books from the library are in place).
The next day, my husband, Trevor, sat with me in the pre-op room, both of us patiently and bravely awaiting the next dozen or so hours of surgery, recovery, days of a hospital stay and several weeks of partial (notice I don’t say full) recovery.
To share my experience I’m going to answer my most FAQs:
What is a Prophylactic Bilateral Mastectomy?
Prophylactic mastectomy is surgery to remove one or both breasts to reduce the risk of developing breast cancer. According to the National Cancer Institute, prophylactic mastectomy in women who carry a BRCA1 or BRCA2 gene mutation may be able to reduce the risk of developing breast cancer by 95%. In women with a strong family history of breast cancer, prophylactic mastectomy can reduce the risk of breast cancer development by up to 90%.
What kind of PBM did you choose? How did you choose this?
To start, it’s important to understand that the mastectomy (breast tissue removal) and reconstruction are two different surgeries, that ultimately take place at the same time, but then require follow-up surgery to complete. I chose the nipple sparing mastectomy (so yes, you now know I still have nipples!) and the DIEP Flap reconstruction.
When I started considering the PBM, my OBGYN pointed me in the direction of Dr. Beatty with The Breast Place, located in Charleston, SC. Dr. Beatty, her staff, and Dr. Hahm, the connected plastic surgeon talked me through the process and gave me all my options. For years, I had planned to get implants post breast feeding, but after talking through the upkeep and having foreign objects inside of my body, I decided to go with the DIEP Flap.
What is DIEP Flap?
During DIEP flap surgery, an incision is made along your bikini line and a portion of skin, fat, and blood vessels is taken from the lower half of your belly, moved up to your chest, and formed into a breast shape. No muscle should be moved or cut in a DIEP flap.
The tiny blood vessels in the flap, which will feed the tissue of your new breast, are matched to blood vessels in your chest and carefully reattached under a microscope.
What do your breasts feel/ look like?
To quote the new physician’s assistant from last week, “They feel like real breasts!” Because they used my own body fat to form the shape, they have a natural feel. Now, what do they feel like to me? I have no feeling in my breasts or in the area near my stomach where the scar from the DIEP Flap remains.
Clothes fit me similarly, although I’m a bit smaller than I was beforehand. They’re perkier even post breast feeding, which is a positive. I will say I still haven’t landed on a bra that makes me completely happy. Underwire is unrealistic post surgery, so don’t go out buying new bras immediately. Your breasts will continue to change size for about a year after your initial surgery.
Are you happy with the outcome? Would you do it over again?
Absolutely. Overall, my experience has been positive. From the support of family, friends, and doctors to the final results. The risk decrease makes it all worth it. Whenever I start to get down about my scars, I look at my son Grant and see that I’m likely going to be around longer to watch his life unfold. Worth it- even with 6 weeks of not holding him as a one year old, post surgery.
What’s been the best side affect?
Truly being able to share my story with others. And knowing that I dropped my percentage from 40% to around 5% (originally 1-3%, but they’ve changed that statistic since I had the surgery).
What was something that was worse than you expected?
In order to remove all of my breast tissue, they had to remove a portion of my rib (1-3 cm) where it meets my sternum. Because of that process, I have a popping on the right side of my chest that mostly happens during yoga, stretching, and sleep. I’ve become accustomed to it, but if you ever see me lay my right hand over my chest quickly, that’s why.
The other two annoyances that stick out to me during this process were the surgical drains and medications. To read more about the reasoning behind drains, click here, but in short they got caught on things, made it hard to go out in public (where do you put them for clothes?) and sleep, and were not fun to clean. They were in for about a week post both surgeries. Honestly, nearly two years later, I’ve gotten to where I can sleep on my stomach again and it is so welcoming.
As for medications, well I could write an entire other post on this. You’re sent home with bags of heavy painkillers, all linked to addiction issues in our country. Luckily, I had a husband who was cognizant enough to realize I was not mentally present the first week or so home. He started taking notes on timing and weaning me off the stronger meds, moving me to Tylenol and Advil during week 2. For some humor, Trevor found me watching the same episode of the Marvelous Mrs. Maisel (and laughing as if it was new to me) a couple of times.
What have been your best resources for recovery and healing?
To start, I was in the best shape of my life before I had the surgery. I joined a workout group and worked hard to be as healthy as possible to make the recovery as easy as possible. I also joined a Prophylactic Mastectomy Facebook group that answered a lot of questions and gave several background stories to other people’s journeys. While I’m not a part of it anymore, it did help to know there were thousands of other people going through a similar situation. There was a feeling of isolation, but I also didn’t feel like having company around often. It was temporary, as everything in life is.
Items you can purchase/ have ready beforehand:
A wedge pillow to help you sit up while you sleep.
A shirt to hold your drains.
Anything soft; socks, robe, blanket.
Protein bars, nuts, dried fruit and other shelf stables snacks.
Whole food vitamins to fill in the nutrients you’re not getting from eating regular meals.
Face masks; they made me feel almost human again.
Books and TV shows ready on your laptop.
An app to keep track of your meds with your caretaker. We used the ‘Notes’ app on the iPhone, but I’m sure there are better options now.
How frequent are your doctor’s visits now?
I only have to visit my surgeon, Dr. Beatty and staff at The Breast Place, and my plastic surgeon, Dr. Hahm, once a year for a check in. There are no mammograms or MRIs necessary, anymore.
What was the financial cost? How did you deal with your health insurance?
There were bills for over $200,000 at the end of all of the surgeries. Luckily, I have excellent insurance through Trevor’s employer (I certainly don’t have that option as an independent contractor in real estate). While I don’t have an exact amount, because there were multiple invoices and doctors, I do know it was under $5,000 out of pocket.
Less than a month before my first scheduled surgery, I received a letter in the mail that insurance had rejected my claim to cover the majority of the cost. This reminded me of the many times I saw my dad sitting at the kitchen table, organizing my mom’s invoices from surgeries and treatments and calling insurance representatives until he got the answer he wanted. So I did the same. I called until I got a sympathetic ear, a woman who currently had breast cancer. She put me through to the right people, who then approved the surgery within 48 hours. So I still got to have my first surgery on my timeline that I had planned work and childcare for. Could you imagine making this huge life decision only to have insurance say “Nah, 40% isn’t a high enough risk”? Well, turns out they didn’t have the right familial history. So to that I say, be your own advocate and ask questions of your insurance representatives. Never stop calling. You will get done what needs to be done.
During the recovery process, I kept some notes to remind me of where I started and where I ended up. Below are those notes, with some additions now that I’m lucid.
POST SURGERY JOURNAL
Entire week of medication fog, but I remember the stellar care I received from the nurses and doctors at East Cooper Medical Center and The Breast Place. I will always remember the kind nurse that gave me my first shower post-op. At home, set up with shows and books, but not ready for any company. Grant is staying with his grandparents. Feels pretty isolating.
Fully engaged in self healing with at home entertainment. Started to accept some visitors. Meds went down to Ibuprofen, Tylenol, and the occasional muscle relaxer. Drains are out, so I can ride in the car, again. Grant is home, but I can’t pick him up, so I mostly stay away with the exception of watching him play. Still feeling a bit isolated from the rest of the world.
Took off my ‘out of office’ on email (a week before planned) and starting to feel more like myself with the light responsibility. Ended up connecting with a new buyer client who was ready then and there to start their search for a home, so Trevor and Grant drove me to a local coffee shop (I wasn’t allowed to drive yet) to have an initial meeting with them. They happened to be a nurse practitioner, so I felt comfortable sharing my story with them later. It was such a positive light in my recovery to meet this person and get back to work!
Work continues to be more of a constant. I try to walk to a food truck festival in our neighborhood and am exhausted for a day. Have to get drains put in again, temporarily. My grandmother, a constant driving force in my life, passes away and Trevor and I travel to my hometown for her funeral. Feeling set back and down.
I’m able to wear most of my own clothes, again. For the first few weeks, everything would rub on my DIEP Flap scar or interfere with my drains. Out of the house more and ready to drive next week.
I get to hold Grant! I’m sure more happened this week, but it was relatively unimportant.
Other follow up:
My main surgery was in December 2017. There were two smaller surgeries to follow that were to close up the scar on my breasts and to ‘fill’ the breasts more after their settling. One was necessary, the other one I wouldn’t do again. For the second surgery that took place in November 2018, they were hoping to make me closer to a B cup, but my fat wasn’t sticking to the breasts like they had planned. They performed fat grafting on my lower back to obtain the fat to be injected into my breasts. It was painful and mostly unsuccessful. Looking back, I wish I would’ve stuck with what the original surgery accomplished because even though it was a smaller recovery, it ultimately kept me down longer physically and emotionally. I was ready to be done!
As time was passing while I was at home recovering, I kept an active list of thank yous to those who helped me along the way.
THANK YOU to…
People that called me brave- it made me braver
People that reached out to ask questions about the process for themselves, a friend, or family member
Library staff that helped me with my book holds
All the podcast and show recommendations (Mrs. Maisel was my favorite)
Thoughtful snail mail and flowers; check-ins via text, once I was able to communicate
Meal Train food deliveries- the impact this made on our day to day life with a toddler was enormous (and some of you should become personal chefs)
My great friend from high school that I haven’t seen in two decades, but took the time to mail me a care package box
Friends picking me up and driving me around to get me out of the house (and one time accidentally buying a house)
MUSC for letting my husband work from home
Colleagues offering to help in any way with work; specifically the owner of my company, Dunes Properties
Clients for being understanding and patient
My ‘project manager’ who reminded me to slow down
My neighbor (at the time) whose own dog exercised Miles every single day on the fence line
My aunts who pulled together my Grandmommy’s clothing which gave me loose fitting options to show property in
Grant’s Poppy & YaYa who watched him away from the house, the first week, so he wouldn’t be tempted to use me as a jungle gym
Last, but not least; my husband Trevor for being a badass who was always supportive of my decision and ran the household for several weeks without a glitch in the system
(And if I forgot anyone or anything- blame it on the meds)
This will likely continue to be an active document, one I’m updating with questions or feedback. So feel free to share yours.
I want to leave you with something that has stuck with me since this experience. I read somewhere that a way to shift your attitude is to say “I get to” instead of “I have to” or “I must”.
I get to pick up my son (although that will be weight prohibitive soon). I get to drive myself to work. I get to go on walks with my family. I get to wake up every damn day and tell my story.