Have you ever played that game called “Bull$hit”? Yep. I have. Have you ever heard “trust the process” and your inner critic screams, “BULL$HIT, I WIN!!!” Continue reading
Today is my anniversary. One year has passed since I had my bilateral double mastectomy. A year ago today, I was up at the butt-crack of dawn and heading to the hospital with Mom, Dad and Liz. Check-in was at 5:15am and surgery was at 7:00-ish am. Two surgeons, along with two amazing teams, and 7 1/2-ish hours later, I was “out” of surgery. Continue reading
As I’m reminiscing on the week before my one-year mark, I think back on all the things I was doing to finish prepping for my surgery. I’m in a really good place right now (physically and emotionally) and excited to celebrate life; even though I’m sure I’ll have a few tears to shed next week. I started writing this post after the first surgery, but never published it for whatever reason. The week before surgery, I was frantically trying to get all my ducks in a row to get my home “child-proofed” and everything tidy at work so they were in a very good place. Continue reading
Leading up to this weekend, I was extremely nervous. I had trained and felt pretty good, but I also had some training runs that led to some self-doubt. What the heck did I get myself into? Did I bite off more than I can chew?
Rewind back to about October/November…
A friend tagged me in a Facebook post about doing Ragnar Relay as an ultra. I immediately said to sign me up. This’ll be fun! Now, remember, during that time I was about 6-8 weeks out from my initial double mastectomy. I spoke with doctors and they were 100% confident I’d be able to do it. Afterall, they reassured me the upcoming second surgery would be a piece of cake! Ha!
I had the second surgery and had complications – fat grafting issues and nerve damage in my stomach at the donor site. There were several times I wanted to back out of Ragnar.
I didn’t. I started “training” once I was cleared 100% by my doctors back in the middle of February. I remember texting a friend freaking out because I had only been able to run one mile. Then I upped it to two miles. How the heck would I be able to run 31-ish miles. I slowly started getting back at it. My pace was more like a turtle running through molasses. I did a half marathon in April and was two minutes off my PR (personal record). I had only done 9.5 miles leading up to that and most training plans have you doing anywhere from 10-12 miles the weekend before tapering.
Well, my motto for the year is to wing it. I definitely winged that one. It gave me a huge boost of confidence and exactly what I needed. If I could pull 13.1 miles outta my rear, I could certainly train for Ragnar but no pulling that out of my rear.
I continued training and doing double runs in a day and a few times a week. I also signed up for a few half marathons that also fell on back-to-back weekends or every other weekend. One of my teammates said the ultra could be done on simply half marathon runs. She’s done several Ragnar relay ultras, so I had that to fall back on.
I wanted to do Ragnar Relay for myself, team, and as an inspiration to other double mastectomy ladies. I needed to do this to prove to myself that I can do it. There’s nothing holding me back but myself.
Anyway, Thursday afternoon, everyone (but Susie) met at my house. I had the van packed with our food container and cooler. My dad made us some car decals and we were putting them on as people got there. The van looked pretty cool!!!
We headed to Madison and picked up Susie from the airport. From there we grabbed dinner and went straight to the hotel to settle in. I was exhausted. I hardly slept Wednesday night and woke up super early Thursday morning. I took vacations days and wanted to sleep in.
I was runner one so I got all my stuff ready and organized. When I packed for this, I put all of my running outfits in gallon zip lock bags. Then when I was done I could throw my clothes back in the bag and no sweaty or stinky clothes out. Imagine what the smell could end up being like after all of us being in a van for two days!
Friday morning, we woke up, had breakfast and headed to the rainy start. We arrived, got our race bags, went through the check-in process, and hung out in the rain.
Next thing you know it was 7:50am and I was about to embark on one of the craziest things I’ve ever done! We took a few pictures and the announcer was shouting out team names. Eek! I was runner one and my first leg was 10.5 miles. We decided as a team to do back-to-back legs to have more down time. We all still had three legs to do, just double the miles than your typical twelve person team.
Leg 1: Run through Madison in the rain!
I started off nice and easy. I put in my average pace as 10:30/mile, and figured that would give me a little bit of a buffet as time went on. It rained/misted for about 6 miles.
Leading up to Ragnar weekend, I never ran in the rain. I would skip running outside and run on the dreadmill. I know, such a diva! My friend Anna laughed at me all the time when I told her I wasn’t running outside. I bumped into her at REI one rainy day, and she said, “what if it rains Ragnar weekend. What’re going to do?” Yeah, WHAT IF!!!! Obviously I would have no choice but run in the rain.
It was extremely relaxing running in the rain. There was this calmness about it and I thoroughly enjoyed it. I had to chuckle at myself though. Here I didn’t train in the rain but ran in it. I watched people prance around the puddles delicately and hop over some like they were playing hopscotch. I was already soaked anyway, so I just ran right through them! Can you say the joke was on me? Thanks, Mother Nature!
For the first leg, my average pace for the 10.5 miles was 10:22 a mile, and I was ahead of my arrival time by a few minutes. Yay!
I had a few kills and felt really good. A kill is when you pass another runner. It doesn’t count when you pass an ultra runner, at least that’s what we said!
I arrived at the second exchange and met Cat who took on the next two legs. I changed and got out of my wet clothes and we got to the next exchange to wait for Cat and drop off Melissa. The rain cleared and it turned out to be a nice, cloudy day which is perfect running weather. We met Melissa to give her water and a snack. She was running over 16 miles total for her first leg. Crazy, huh? Then it was Susie’s turn to run. She ran, and then we picked her up and off Jenni went.
We went to the next exchange point and I got ready. I was next up.
Leg 2: 8.7 miles on some trail
Prior to this leg, Cat taped up my knee with KT tape because my right knee was bothering me. I started running again around 8pm and the next thing I know, the tape was falling off. Ugh.
I’m totally a fan of running at night because it’s so peaceful listening to nature and looking at the stars and moon. It was overcast and foggy so none of that happened, but it was still an incredibly beautiful and relaxing.
During my double training runs, I tended to do better in my second run. Leg two was no different. I averaged 9:47 for my 8.7 mile run. Yay!!!
Next thing I knew I was arriving at the exchange and slapping the wristband on Cat’s arm. I felt really good and actually wanted to keep running!!
I felt great for a while afterwards, and then it hit me. My stomach felt like crap. I couldn’t eat anything and only water tastes good. I started downing tums, but it wasn’t doing anything.
We continued meeting at the exchanges to drop off the next runner and pick up the previous runner. We had a blast in the van driving and hanging out. We laughed, joked around, and at one point attempted to sleep.
I still felt like absolute crap no matter what I did. Oh well, I had to suck it up and prepare for my final run.
Leg 3: 12.1 miles.
My third leg was running through Racine and ending in Kenosha. How extremely boring…the only exciting thing was the rain I was running in. Yes, Mother Nature had a laugh at my expense.
I felt okay the first few miles and then it hit me – my stomach hurt and my quads were screaming and cursing my name. Holy crap.
I took a walk break and texted my mom telling her I was dying. She texted back asking if I won the race. It’s a joke between her and I. Anytime I do a race, she always congratulates me and follows it up with “did you win?” We both laugh and laugh.
I started laughing and texted back saying “no, but I’m not winning and am letting my team down.” I was averaging 10:30 and progressively getting slower. No matter how many shot blocks I ate or water I downed, nothing was helping me! I was bonking.
I didn’t want to let my team down and felt I was (even though I know I wasn’t – the games the mind plays). I texted them saying I was sorry and averaging an 11-ish mile pace. There was nothing I could do but suck it up and put one foot in front of the other.
I got to exchange 25 and the volunteers were shouting my number out. I kept yelling I was an ultra and running through. They didn’t comprehend until I ran to the exchange thing and ran back out to the trail. Everyone started cheering for me and telling me how I was crazy! When they passed me, they all told me I was awesome. It gave me a little boost but didn’t help with my dead quads.
Pretty soon I spotted the “one mile left” sign. Yayyyy!!!! I took a selfie with the sign and got a little emotional. Holy crap. I just ran 31.3 miles in 24 hours! No freaking way. I picked up my pace a little bit and attempted to finish strong. But, that didn’t happen
I couldn’t believe it. That run felt like it took me a million years to make it through, but was all a blur when I reached the exchange and passed the bracelet on to Cat.
My teammates met me and off we went to the next exchange. We received messaged from Cat saying she was hit by a car, okay and going to continue trying to run. She was hurting badly, so we drove and met her and Melissa graciously agreed to take her last three miles. Melissa’s total mileage for the two days was 37plus miles.
We continued dropping and picking up runners. Jenni was the last runner and would take the last two legs to Chicago finish line.
We drove to the finish line area, parked the car and scrubbed the van decorations and sayings off the car. We all hobbled to the finish line and cheered other runners and teams to the chute.
We started getting nervous. Next thing we know, it’s raining and lightening out and no sign of Jenni. The stupid stop lights were interfering with her agenda. Honestly, it’s so hard stopping and going. It’s difficult to get the legs going again especially when you’ve already ran such long distances already.
Jenni made it and we all ran across the finish line, only to be tossed our medal package and a few pasta cups. We took one picture and were instantly told we had to leave and get to our vehicles! No finish line party or free beers for us!!
Once in the van, Jenni got a text saying the race was called and teams had to get their runners off the road.
All-in-all it was an amazing and fun experience. I learned much about myself mentally and physically and I wouldn’t trade those things at all. I also learned much about everyone else, too! It was an absolute blast and an amazing girls weekend. Who goes on a girls weekend and runs an ultra relay? All of us crazy chicks!
Running 31 miles is no joke on the body. Take that and throw in no sleep and it makes for some delusional and funny moment. In the end, I’m extremely happy with my performance and would do it again in a heartbeat. I recorded most of my runs and between the three I averaged about a 10:30 pace.
short and sweet about what’s going on with the recovery and stuff.
I had a follow up doctor appointment yesterday and received some good and bad news. On Monday it will be four weeks since my expander/ implant exchange and fat grafting surgery. I’ve been frustrated because at this point with the last surgery, I had been doing PT faithfully, lifting my 2/5 pound weights, and walking on the treadmill anywhere between 2-4 miles at a crack. This time around? Walking from my car to house (vice versa), work and that’s about the extent of it.
Its frustrating but I have to listen to my body. It’s best I stop and smell the roses instead of putting myself several steps backwards. It’s key I don’t do much upper body stuff right now so I let the fat grafting from the donor site (belly) adhere/”took root” to the boobs, it’s new site. I needed a lot of grafting done on the left boob to even out dents and ridges. It appears some spots are dying and may need another round of fat grafting. Potentially. Not thinking about that though. Also, my implants are larger than the expanders so I need to let the pec muscles stretch a little more and settle in.
I asked Dr S yesterday when the restrictions would be lifted and why I was still having such terrible abdominal pains at the fat grafting donor site. I sat there topless while he examined me. The new girls look great and he took time to admire his artwork. My chest was a blank canvas that he turned into something I can honestly say I’m growing to like.
He noticed my stomach was still swollen and sensitive to the touch. I’ve been wearing yoga pants and loose bottoms since day one and have only worn jeans a handful of times. Anytime I wear jeans or something tighter, my stomach is in excruciating pain.
After talking about restrictions and things I got some good and bad news…
1) I can bike on the trainer, but can only sit upright – no aero position. I only have a triathlon bike so promised him I wouldn’t ride aero and would use my arms to support myself. Just because he said I can bike easy doesn’t mean I actually will…keep reading.
2) no swimming for at least 6 months (ok, just kidding). Not sure when I’ll be able to swim, but there’s no rush. I have no desire to get in the pool anytime soon.
3) I can start running again in two-ish weeks. Tentatively speaking. Depends on the bad news…
1) I can start wearing “normal” bras again. I hate shopping – it’s depressing shopping for new ones so I gave up. Sports bras or nothing it is.
2) I have nerve damage in my lower stomach area at the fat grafting donor site. At this point, we aren’t sure if it’s a temporary or permanent thing. This one sucked to hear, but it’s out of my control and there’s nothing I can do. I’m hoping it’s not a permanent thing.
The nerve damage would explain why my lower stomach area has been swollen still and hurting. At least I have some answers now.
If the spots of fat grafting I mentioned above do fail, I will not be doing another surgery or round of fat grafting. After being in this much pain still from it the first round, I’m not dealing with it again. It’s not worth it to me. I’m fine with debts and ridges. It’s my new norm and there’s a story to tell.
So, with that, I’m excited there’s light at the end of the tunnel. I desperately want to be done with this and move on with my life. I want things to go back to normal…well, let’s be honest, I’ll never have that normal again (which is sad at times and I still tear up about…like right now), but I want to get on with things, figure out my NEW normal and start loving my body again. I’ll bounce back in the multi-sport world, but there’s no pressure or stress to get back in the game. I will race again, but not at the old intensity. I just don’t have that in me right now. Heck, I might just throw in the towel for the year and come back swinging in 2016!
Anyway, there’s a little glimpse of what’s going on in my world.
There’s times I feel broken with this and everything going on…but…I remember this…
Cheers to another day! Knowledge is power. Thankful to know and be proactive!
(A little something I wrote tonight…)
‘Twas the night before surgery and all through the house
not a creature was stirring not even a mouse.
The boob pillows were hung by the recovery chair with care
in hopes that new boobs would soon be there!
I am snuggled up and comfortable in bed,
while visions of surgery and boobs danced in my head.
While Lexi Rat slept soundly close by,
I can’t wait to wake up from surgery and say, “boobs, hiiii!”
And soon enough the alarm clock will go off,
and I’ll spring from my bed, “cough cough”.
Off to the hospital we’ll be dashing,
and soon enough the girls will be flashing.
Oh I can’t wait for these rocks to go,
So I can get on with my life’s show.
New foobs, bras, tanks, oh my!
Wait until you see my new boobs catch your eye.
With my lovely surgeon so spunky,
I know in a jiffy he’ll get rid of the funky.
He’s so precise and meticulous with care,
and claps his hands and call the staff by name…
oh but I don’t remember their names…
Down the hallway we will go, through these doors,
down this way and I won’t remember because sweet dreams and la-la land shall I be.
I’ll wake up hours later oh so high,
down the hallway we will fly.
Up to the recovery room we flew,
with my new Pamela Anderson foobs and surgical bra, too.
Foobs. Foobs. I have new boobs.
And then in a twinkling, I’ll hear them say,
“you’re clear to go, my what a wonderful day!”
The chest is plenty tight
but new boobs make it totally alright!
My eyes how they twinkled. So slap happy I’ll be.
I can’t feel a thing, as my friend Dilaudid helps me.
My chest is chubby and plump,
but thats okay I won’t be a saggy frump.
Don’t be jealous when I’m old,
for you will have the saggy bags I’m told.
I can’t wait to be done with this and give santa a holly jolly kiss.
Recovery will be/should be a breeze.
But don’t worry, I won’t be a tease! T
This will all be a blast in the past,
I can’t wait to swim and be fast… (for these helium-ish firm jugs will keep me afloat!)
I did all of this to avoid the dreaded C word.
My, I hate Cancer, it’s such a turd.
Knowledge is power and I have no regrets.
Happy double mastectomy, rocks and now implants to me, and to all a good night.
PS: I understand if you get stuck in someone else’s chimney.
REWIND BACK A FEW MONTHS…
A week after I found out I was BRCA1 positive, I was at the hospital for my first mammogram. Memorial Day weekend has a new memory for me! My awesome, amazing, super-supportive friend, Susie, came with me. I was a little freaked out and nervous throughout the day, but it was what it was. I needed to be proactive and take control.
I’ll be the first to admit I do not have a green thumb. For many years, I had my own garden and was proud of my accomplishment of NOT killing things. They did okay, but wasn’t anything spectacular. I spent hours a week weeding, watering the plants, and tending to it. I researched which plants you should and shouldn’t grow next to each other. I bought a small greenhouse to start the season earlier, so I could reap the benefits sooner. I carefully measured (with a ruler mind-you) how deep I planted the seeds in the cups. It took time and dedication. But, I did it and the sense of “I freaking did it” when I harvested my plants was awesome.
If you do research and understand the laws of nature, you can create, grow and cultivate gardens that overflow with fruits, vegetables, and flowers. Same applies to life. If you use those laws of life to your advantage, you can grow a life full of meaning and beauty.
In life, each of us is growing our own gardens within us. Life brings us all kinds of circumstances, and some have a painful path to walk. Every thought you have is your soil. We’re all given a little piece of ground to work with. My garden isn’t the same as yours; and yours isn’t the same as the next person beside you. Each garden comes with different soil, seeds and climates.
In a garden, weeds steal nutrients, space, water, etc from other plants. They can overgrow the garden and take over whatever is in its path. Weeds like fear, envy, grief, rage, doubt, insecurity, etc can all feed those weeds. It’s important in any trial that you’re pulling those weeds out. It’s okay to have certain thoughts and feelings while going through tough times; however, it’s not okay to let things go, fester and become a deeper issue.
All gardens have potential to blossom and be beautiful. Sometimes while taking care of the garden, you have to get your hands a little dirty, play in the soil, and tend to the pests. In life, we have to do the same things when circumstances and trials come our way. We can turn our heads the other way and ignore those weeds, but what good does that do? Why bring out the weed whacker, when you could pull those few weeds here and there? It takes constant tending and, perhaps, years to uproot certain weeds.
Gardens grow with love and care. Feed your garden with truth, acceptance, trust, joy, dedication, forgiveness, patience, thankfulness, inspiration, kindness, etc etc.
I’ve had to take care of my garden a lot in the last few years, more so this year. I can see how things and circumstances I’ve had to go through have led up and helped me be where I am right now. 2014 hasn’t been a kind year to my family or me at all. But, I have two choices – become angry and resentful for the cards dealt my way or look at it as a growing opportunity. Like I’ve said many times before, life doesn’t come with guarantees or promises that it will be easy. I haven’t arrived, nor will I ever fully arrive until I’m taken from this earth.
With a garden, you have to learn to let go of things that are out of your control. I can be OCD at times (shocking!) and want to plan out every aspect of life. I planned races this year and had some pretty lofty goals, only to have things out of my control mess that plan up. Vineman Half Ironman was going to be MY race. I went into it with a stellar training plan, hired an amazing coach, had a race plan to accomplish and shave off an hour from my previous half Ironman time…I had all my ducks in a row…My nutrition going into the race was the best I’ve ever executed. I woke up race morning and ate my calories. I did the swim and set a personal best. Hopped on the bike and started eating/drinking…only to start puking within the first few miles. I couldn’t eat the rest of the day and my “run” suffered. I had no intentions walking a majority of the run, but I had to do whatever to get to that darn finish line. I planned to do my very first marathon in October and signed up prior to Sarah’s diagnosis with breast cancer. Well, I got my genetic testing done, got a surgery date scheduled, and had surgery. No marathon for me this year and I’m completely okay with that!!
Our lives are subject to elements that are completely out of our control (sickness, death, storms, disease, etc). When I had my garden, I had to deal with all sorts of pests – rabbits, foxes, deer…I couldn’t get rid of them and putting a fence/cage around it did nothing to keep them out. In fact, I think they started taunting me even more when I put up the cages. In life, it’s the same thing. You can put up protective barriers around your life to not let those pests, hurts, pain or whatever in, but they’ll still get in some way, somehow. You can put walls up, but that only lasts so long.
Prior to surgery I had plenty of fears, a lot of them I built up in my head, and let them consume me at times. It was part of the process and dealing with emotions. Here are a few for example: 1) I wake up during surgery like Sarah did during her second biopsy. 2) I lose blood supply to my nipples, they die and are surgically removed anyway. 3) My incisions pop open and take a heck of a lot longer to heal. 4) The drains get snagged and pulled out, which results in fluid build-up and pooling between the expander and Alloderm. Infection settles in and there’s the possible removal of the expander anyway. 5) My body rejects the expander and they have to open me up again to remove them. 6) As a result of number 5, I’m flat-chested for at least 6 months before they can try the whole process again. 7) No sleep, blood clots, issues prevent healing. 8)…..
All of those fears couldn’t be controlled. I learned to deal with those issues as they came up. I couldn’t plan things out or be in control; whatever happened, happened.
Right now, I’m focusing on letting go of my fears and worries with this double mastectomy and life after. This last week I’ve had a lot going on and much out of my control. I could bore you with all the things and details, but I won’t. Mostly, anxiety/fears leading into this week. I have plenty of fears and concerns with more doctor appointments and even going into this second surgery (expander/implant exchange) come December (fingers crossed!!). I don’t want to get too excited, because that could very well change. Again, out of my control! I cringe at the sight of seeing gauze, bandages and tape. I fear I’ll get super sick again like I did. I’m scared and fearful of the pain that will come with this next surgery. Although, most of my research and talking with other’s have said the second surgery is a complete breeze. No hospital stays, less pain, bounce back quicker, and much more. I don’t like the unknowns. The worst of what could happen already happened with simply doing the double mastectomy. I don’t know what to expect with this expander/implant surgery, but I do know it’s not worth stressing myself over the ‘what-ifs’. I cannot control the outcome, but can only trust my doctors that they’ll what their skilled and trained to do. They’re the experts.
I can’t keep feeding my thoughts and fears, because it leads to other problems. I’m pulling those weeds in my garden and replacing them with seeds of love, beauty, self-knowledge, strength, and acceptance. I want my garden to continue blossoming into something even more beautiful. Growing a garden takes time and constant nurturing and tending. It won’t happen overnight and I’ve accepted that a long time ago. I can’t advise you on what to do in your garden, but I can be there to love you and support you no matter what. I haven’t worked with your terrain, fertilizer, weather conditions, pollination, climate, etc etc. I cannot tell you how to grow the best garden. I’ve weathered different storms.
I’m learning to bend with the storms, let go of the conditions I cannot control, let the storms and rainy days better me, trust the sun will continue to shine, and continue to blossom. And you know what? I want to share my garden with others and let them in on my journey.
I’m learning to let go, one day at a time. I’m learning to continue taking care of my garden and mind.
“Life is like a garden, you don’t end up where you started…”
Incredible weekend – Part 1 (I know, catchy title)
Yesterday I went to a Bells for Boobs fundraiser at a local gym. My triathlon teammate’s daughter organized the event to raise money for women at the nearby hospital to help pay for breasts screenings. It was awesome – there were sponsors involved, vendors there, raffle prizes and snacks.
Participants committed to swinging a kettle bell for an hour and collected donations. Some got people/sponsors to donate per swing and others just took general donations. One gentleman was in charge of the timer and would let them all know when the minute was up. It seemed like each participant came in with a goal of how many swings they could individually do in the minute. Each person had an index card so during their break between “minutes” they could tally how many they did.
I arrived before the event started and my friend’s asked me if I’d share my story prior to them swinging. Sure thing. Ugh…brain fart! I didn’t want to take up too much of there time from swinging and raising money. How do you summarize your story in a few, short minutes?!?!
Everyone was so sweet afterwards and some thanked me for being extremely honest to complete strangers. I want to make a difference and share my story. I want people to get informed and be proactive with getting the genetic testing done if breast cancer and the BRCA gene runs in the family and to get routine mammograms done.
While participants were swinging, I talked with one very sweet lady who had breast cancer and was able to ask random questions about recovery and future stuff. She was so kind and encouraging and it was nice to talk with her. Honestly, I love talking to Survivors and hearing their stories!
I wish I could have participated in swinging a kettle bell, but I don’t think that would have worked out well…although there was a tiny one I could have used and raised money with my stellar bicep curls…Ha! See my rationalization!
The event was fantastic!! Everyone swung their hearts out! You could see pain in some, but they continued to push through and make it happen. My friend Susie came and I bumped into another friend I hadn’t seen in a long time. It was such a fun afternoon and I’m looking forward to next year!
Thank you, Johnny and Mary for inviting me, Mollie for organizing the event, Ryan for opening up your gym and hosting this, those who sponsored the event, and everyone that participated.
Growing up I never knew that much about cancer and I certainly had no idea that breast and ovarian cancer ran in my Dad’s side of the family. When I was a little girl, I remember making weekly visits to see my grandma. She was gravely ill. Little did I know cancer would take her life. She was a two-time breast cancer survivor. But, it was the silent killer, ovarian cancer, which would kill her.
When my aunt was 38, cancer struck again. She was diagnosed with cancer; and the genetic testing came back. BRCA1 Positive. She went through chemo and treatments, had a bilateral mastectomy and has been cancer free for quite some time now. As I got older, I understood what cancer was and knew the gene ran in the family, and it’s always been in the back of my mind to get the genetic testing done.
Fast forward to 2014.
I was out for a jog on cool day in March and my phone vibrated. A text from Sarah, my older sister (but not by much). Her biopsy came back and she had breast cancer. I struggled the rest of my run and tried to keep the tears from rolling down my cheeks. How could my sister be diagnosed at 29? What does that mean for me being 26? Will I be in her shoes in a few years? Is it BRCA1 related? Is she okay?
We didn’t know much at the time and had to play the waiting game. My sister lives in South Carolina. Some of my siblings went down to see her, but I wasn’t quite ready. A few weeks later, I went to my mom with urgency that I HAD to go see her and the time was now. We booked a flight and less than 24 hours later, Liz and I were on an airplane. Little did I know, that same day Sarah called my mom and told her the genetic testing results came back but they wouldn’t tell her over the phone.
I got to South Carolina and was able to be at her port “installation” surgery and geneticist appointment where the results were read. It was indeed BRCA1. We all were crying as the sweet doctor read the outcome and what it meant. She gave us all papers and a copy of Sarah’s results so I could get tested when I got home. In fact, the doctor offered to move the schedule around and test me right then and there. I told her no. I wanted to go home and get my ducks in a row before doing such a huge, high risk test that could ultimately affect my life-insurance policy and a few other things.
If you don’t have life insurance or do have it and want to make changes, you cannot do the genetic testing until the insurance policy is approved. You cannot have future appointments either, because they’ll wait for the appointment dates/results and then approve or deny your policy. I already had a policy but wanted to modify it and make sure everything was to my liking should I be stuck with a positive test result. When you test positive, it’s extremely difficult to up your policy. Life insurance policy differs from health insurance whereas it can abide by its own rules and can “discriminate” against you for preexisting conditions or high risk things. Sidenote: if you want to get the genetic testing done, get alllll your ducks in a row first.
Before long I, too, was sitting in a lab getting blood drawn. My younger sister, Liz, set up an appointment at the same time. We both saw the genetic counselor the same day and I can’t tell you how awesome it was for her to be there too. The counselor was very kind and sweet, but I didn’t want to talk about “what-if’s”. I knew what I would do if my test came out positive. Besides, there was no need to discuss a positive test result because I was seeing breast cancer first hand. What was there to discuss?
Thank goodness our genetic counselor was amazing and even had us laughing. We came prepared with all of the family test results, including my aunt’s, and had my dad’s family tree completed. I took a lot of notes and remembered things quite well. The one thing that stuck out in my mind was, “what if Liz had the gene and I didn’t or vice versa? What if neither one of us had the gene and Sarah was the only girl in the family to test positive?” The counselor was concerned about that, and spent some time going over that to make sure we both were psychologically prepared and equipped with how we’d move forward.
We left her office, May 8th, and I was at peace. There was nothing I could do. Everything was out of my control. There was nothing I could do to my DNA to change it.
My life changed May 20th, 2014. My phone rang and my worst nightmare was reality. I tested positive for the gene mutation.
When you’re a carrier for BRCA1, you have an 87% chance of developing breast cancer in your lifetime and a 44% chance of ovarian cancer. That’s extremely high risks. I felt my breasts were a ticking time bomb and I was playing Russian Roulette.
I was 26 when I got the news. Called my parents, told my siblings, and checked out. The gentleman on the phone told me about my 4 options, which was also discussed in the genetic counseling appointment. I already knew and had been doing research since my sister’s diagnosis.
The 4 options were:
- Do nothing! (which is complete foolishness!)
- Do a preventative chemo treatment drug, which would only reduce my odds for up to 5 years.
- Do surveillance – for breasts, I had to do monthly self-exams and mammograms and MRI’s twice a year; and for ovaries, vaginal ultrasounds and CA-125 blood tests twice a year.
- Do prophylactic surgeries.
After getting the call, I set up my mammogram and other appointments with breast surgeons and reconstructive surgeons.
My mammogram appointment was interesting. My friend met me at the hospital, because my mom was in South Carolina. I was anxious after because what if they found something? My surgeon appointments were straight-forward and I was extremely pleased with both of them. They put my mind at ease, spent over two hours with me and explained things in great detail. I didn’t even bother to get a second opinion. I LOVED them.
After meeting with them, I randomly bumped into people who had breast cancer and would ask them who their surgeons were. A lot of them said the same name (which was the doctor I met with). Some people would tell me they wished they went with her. I knew I was making the right decision.
After seeing my gynecologist and telling her the news, she immediately ordered the CA-125 blood test and sent me to the lab. Once again, I found myself getting poked and two tubes of blood taken. She ordered the vaginal ultrasound and within a week I was in another office getting poked and prodded with this uncomfortable probe. All of these visits were extremely stressful. When would I get the call saying they found something? Would this be the time they find something?
Like my aunt, grandma, and sister, I knew breast cancer would be in my future at some point. I decided enough was enough. I couldn’t handle the anxiety of doctor’s appointments on top of how expensive everything was beginning to be…and this was the first year of surveillance! I decided if I was going to lose my breasts, it would be on my terms, not cancer’s.
I had my prophylactic bilateral mastectomy (PBM) September 10, 2014. Making the decision to have the surgery was extremely difficult, but yet, easy. I can’t tell you how many nights I cried myself to sleep, but with the knowledge I faced, the decision was a no-brainer. I wasn’t going to walk around with ticking time bombs or wonder when my body would turn against me. I poured over research, talked to other women who were BRCA1, read blog after blog, emailed several ladies from the blogs, and reached out to those with cancer. I’m very analytical and weighed all my options. I made a pros and cons sheet for the surgery. I made the best decision for me.
From the time I got the call saying BRCA+ to making a decision on surgery it was only a matter of a few weeks. I knew in the back of my mind, surgery was the only way to go (and I knew that when I met with the genetic counselor).
I knew the surgery would be hard, both physically and emotionally. But, if I heard the words you have cancer down the road, I could only be mad and upset with myself. My decision boiled down to three things: being told I would be Sarah in a few years, statistics, and my health right now. Doing the surgery earlier in life, while being young, single and healthy, would make the recovery process somewhat easier (and boy has it made a difference).
I’ve been extremely blessed to have a great deal of support from friends and family. But, I’m also aware not everyone agrees with my decisions. I’ve had some people say some awful things to me and even lost a few friends over it. I’ve felt judged and I would be lying if I said my feelings weren’t hurt from time to time. One guy friend went as far as saying, “I would NEVER date a girl with fake boobs.” One lady looked at me and said, “Well, you get a free boob job and can choose your size now.” Actually, I’m paying thousands of dollars to meet with doctors/surgeons, have tests done…how is this a free boob job? Another person told me they were just boobs and could be replaced. Be replaced? Replaced with fake boob, be carved out like a pumpkin, lose feelings in both breasts and never be able to breastfeed my child should I have one. Oh, and never be able to feel my child/newborn lying on my chest. That’s right, they’re just boobs. Yes, but they’re MY breasts. Another told me I was being ridiculous and only making this decision out of fear. Fear? Perhaps fear played a little part. But don’t tell me you wouldn’t make the decision if your sister was going through hell and you very well could be in that situation in a few short years (to which I was told by numerous doctors that would be me…oh, yes, keep reading. I’ll get into that, too)
No one wants to get cancer.
No one wants to watch a loved one go through anything that could go wrong – go wrong with chemo and biopsies. No one wants to lose their breasts and ovaries.
I loved my breasts. In fact, it was the one thing I absolutely loved about my body. They were perfect because they were mine. It was an easy decision to do the surgery, but not an easy decision to part with my feminine body parts. How would I explain my lack of boobs to people? Would I be insecure after surgery not having any? (to which I can honestly say now that I am NOT insecure with not having any).
I have grown so much since March when my sister was diagnosed and May when I received the BRCA1+ news. Even though I don’t have breasts right now and have rocks in my chest (expanders), I feel more beautiful, more comfortable with life, more confident, and definitely more feminine. As someone told me a few months ago, “being empowered is a wonderful thing and having peace of mind is priceless.” Knowledge is power. Power to take control and control the outcome.
Well, what about ovarian cancer?
I am choosing to do active surveillance. I am not comfortable or ready to do an oophorectomy or hysterectomy. I am single and don’t have any kids. I would like to get married and maybe have kids of my own, but if that doesn’t happen I’m okay with that too. I will make a decision on a hysterectomy by age 32. 35 is the standard age to consider removing, but why wait when I know it already runs in the family. Until then, I will continue to be faithful to take care of my body and be active with screenings.
My advice for others affected by BRCA1+ is to listen to medical professionals but to do your own research.
I spent hours and months researching the gene to understand all the risks the gene mutation has. I understood the risks of complications and the potential for longer recovery. I also spent countless hours on the phone with doctors, surgeons and other women and listened to their opinions and first-hand stories. I was fully aware of everything and able to make an informed decision.
I made my decision and completely stand by it, nor do I regret it one bit! When my pathology report came back and there were atypical cells found in both breasts and a small lump in my right breast, a sense of relief and joy came rushing through my body. In my case, my cells were already beginning to mutate and change. Being BRCA1, my body allows the cells to grow, divide uncontrollably and eventually forming a tumor. They didn’t get to the point of growing outside the ductal and becoming a lump, but they were well on the way to becoming cancerous.
I made the right decision. Period.
People said I was crazy and extreme. Yep, they can think that, but I don’t believe it. I prevented cancer from taking control of me. I controlled the situation. I controlled the outcome. I’d rather be proactive than reactive.
The hardest part in this process has been the recovery. I woke up after surgery feeling like a MAC truck hit me. Or like I told my mom, “I feel like I have an elephant sitting on my chest just chilling out.” I’d like to think I have a pretty high pain tolerance (thanks to my 6 brothers). The pain hasn’t really been an issue. In fact, I haven’t had any pain meds for the past 5 days (score!). The downtime has me pulling my hair out. I’m a very active person and don’t like sitting still. I’m always on the go and being told I cannot do something is quite frustrating. I just want to put my hair in a ponytail. I’ve had my moments, but I feel I’ve stayed pretty positive this whole time and haven’t complained.
I’m three weeks out, feeling amazing, loving my mosquito bites…but extremely antsy. I’m feisty and ready to get back into my normal. I miss running, biking, strength training, and swimming…wait, did I say swimming?!? I’m going to be going back to work for a few hours here and there throughout the week. I’m not quite ready for an 8-hour, 40-hour work week. I don’t want to rush things and end up a few steps back. I’m learning patience.
Through the struggles, I have learned much about myself, my body and my mind. I did this! I will get through it. I am alive, breathing and healthy. Nothing can stop me now!
I am extremely lucky to have this knowledge that my Grandma didn’t have. I’m lucky to have the choice to be a Previvor instead of a Survivor. I don’t have to worry about the 87% hereditary risk of getting breast cancer. I don’t have to worry about future mammograms/MRI’s or worry about my ticking time bombs.
Knowledge is Power.
So, let me ask you, if you knew your car had faulty brakes, would you still get it in and drive it around?
If you knew you had the BRCA gene mutation, how far would YOU go to avoid breast/ovarian cancer?
PS: Today is National Previvor Day and kicks off Breast Cancer Awareness Month. I’m going to celebrate being a Previvor with a nap and a nice dinner out…Mosquito bites and all…