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
Tag Archives: mastectomy
Priorities and A New Normal!!
I’ve been silent on FB and my blog for many reasons. One of the big reasons is, I’ve opened up to close friends about how I was really doing and shared my fears/thoughts of life in the future, only for them to freak out on me, tell me to snap out of it or that I was fine, and was overreacting. At that time, all I needed was a listening ear, no responses and someone I could simply talk to and be honest. Getting that kind of reactions from close friends really put me on edge. It’s one thing when strangers and acquaintances say mean things; it’s another coming from close friends. I clammed up and haven’t really opened up since.
Anyway… I hope I don’t offend anyone with this blog post. It is not my intention to point any fingers or call anyone out. I’m strictly being completely honest. I don’t say the following for any sympathy, empathy or anything of that sort. Honesty 101.
You have no idea how the simplest things (or luxuries as I call them now), can be stripped away. I don’t wish my situation on anyone, nor do I wish anyone had to go through what I did. Sacrificing something that defines one as a woman isn’t something I’d ask or wish upon anyone. Not even my worst enemy (which I don’t have any…ha, that I know of). I don’t regret my decision at all.
I only wish my life could go back to the simple days. The days I could fully extend my arms, do 50 big-girl pushups without stopping, pick up a pack of water and not drop them, etc etc. You have no idea and hope you never will. I don’t expect people to understand or comprehend my life now. I’ve been extremely quiet on Facebook and my blog. Part of me died at my initial double mastectomy. I’m finding that part again. Life with implants, pain and all that comes with the territory. As much as I try to go back to the person I was before my surgery, it’s not possible. I can’t pretend or live in the fantasy world. I did for a while, and snapped out of it because it only brought me more frustration. It’s not healthy by any means.
Sometimes I get really mad at what I lost. Nothing comes simple anymore, but I’ve learned to find beauty and patience in that. My new normal will hopefully continue to get better. My range of motion will hopefully improve. My pain will always be there, but maybe it will someday not be there. Someday I’ll be able to sleep more than 3 hours at a crack. Hopefully someday I can get out of bed without feeling like I’m 90 years old. Jogging a mile won’t feel like I just ran a half marathon. Gosh, running and not having pain would be a milestone for me. Gosh, no pain in general would be an accomplishment. There’s pain – physically and emotionally.
I struggle with things every day. I’m honestly not doing as well as I thought I would be doing after this second surgery. I’m two months out and still dealing with things, some I just don’t want to talk about or bring up. I was told it was simple and easy with less complication. I had no idea I would not bounce back physically. Gosh, 6 weeks after my first surgery I ran a 5k. 6 weeks after this second surgery, I was benched still and letting the nerve damage/pain heal. Quite frankly, everything recently is wearing me down mentally. I’m making the best of it and seeking things out like yoga, which is gentler on me. I can cycle on the trainer, and that’s my happy place; my first love. I’m doing that 2 times a week. Yay, for the little things. Even still, I still struggle with certain aspects of yoga and cycling. Some days I have no problem picking up my bike and putting it on the trainer. Other days, I’m in pain and have almost dropped my bike. My new normal. Such is life. Yay!
I want to go back to when days weren’t consumed with scary thoughts and what-if’s. Knowledge is power. There are days I wish I never went through the reconstruction process. There are days I want the implants out. I still worry and have my moments with the next big decision I’ll have to make, a hysterectomy. I worry about upcoming doctor appointments with my oncologist and gynecologist.
I am not upset with those people who complain or bitch about their daily struggles, being sick and not being able to run or workout for days, having a bad day at work, and the list goes on. I’m not pointing fingers, but it’s frustrating. If that was all I had to worry about, my life would be pretty darn perfect. Being sick isn’t that bad. Inconvenient? Yes. Not being able to run really isn’t that bad. Inconvenient? Yes. Having a child dump cheerios on the floor isn’t that bad in the scope of things. Inconvenient? Yes! Grandma wants to send your son to school with a Mohawk and that’s your mountain for the day? It’s truly trivial in the scope of things. Don’t worry, the gel will wash out. That Mohawk isn’t really a problem after all when something more serious and legitimate comes up. PS: Live a little and send your son to school with a Mohawk! Lol J
Honestly, it’s nothing in comparison to losing your breasts to prevent cancer. If I could take that sickness or bad day away from you and put it on myself, I would. The biggest thing I struggle with is listening and hearing friends and people complain about such minimal things in life. I complain. Trust me. Ask the few close friends in my life. Please find patience and gratitude in your life, and think before you speak or post things on Facebook. Your life truly isn’t that bad. Be thankful for those little challenges that cause you to step back and have a little break in this race called life.
So what if you can’t workout? My workouts consist of crap. I can’t do what I once was able to do. I do a minute plank, and my chest and upper body feels like it did a killer upper body workout that night and the next few days. I jogged .25 miles, and according to some that’s not technically considered running, and my chest felt like it was being ripped in all places. It’s my new normal that I hope gets better in time. I’m not bitching about that on Facebook, Twitter or whatever. I would love it if I could find a personal trainer who has experience with double mastectomy patients. No one wants to touch me with a 10-foot pole. There’s more to life than working out.
Physically I will learn to accept this new normal and figure out how to move forward. I’m coping and having fears. I’m learning patience with myself and my limitations. I’m slowly getting back into the game, but it’s more like a tortoise walking through peanut butter, if anything. I’m constantly being asked when I’ll be back to things or if I’ve just completely given up. If only you knew! I started doing yoga, a very basic introductory kind of class, and it’s been great. I cried after the first class because I couldn’t do everything and there was pain from random movements. It was a great class, but hard accepting the new normal and limitations. Hard seeing my chest deflate and become pinecones while in down dog because my pec muscles pop out and contract randomly and oddly. I did what I could, and didn’t do what I couldn’t. I knew my boundaries and the instructor was great with helping me modify.
I have gone through the grieving process. I still go through random moments, and think I will for the rest of my life. The simple fact is this BRCA gene doesn’t define me by any means. I won’t let it. I don’t want you thinking I’m in some black hole or dark, horrible place. I’m not. I have my days – More so lately, than ever before. Sarah’s one-year anniversary from her diagnosis is coming up. My one-year of finding out I was BRCA1 and my roller coaster of events and decisions is coming up. I find myself reminiscing, wishing I could go back to life before this surgery. I find myself stuck in one place, like standing still, while watching the world spin around me. I feel like I had this huge support system in the beginning, only for it to dwindle down. I’ve lost friends throughout this because I made the decision and they didn’t support it. I’ve lost friends because of comments and reactions to blogs. I feel alone at times. No one around me understands what I’m going through and will have to continue going through in the future. People don’t understand.
“If they only knew. If they only knew what they couldn’t see. If they only knew how hard she worked. If they only knew the struggles she’s overcome. If they only knew the battles she fights everyday. If they knew, that behind her smile, was a story you would never understand. If only they knew…”
I don’t regret doing the surgery at all. Please do not think that. I do have to say, whoever said implants were squishy, lied! LOL. I am extremely thankful and blessed that I had the knowledge I did. The knowledge to be proactive. I’ve been told it gets easier over time. I am blessed to know and be able to have amazing doctors and surgeons operate successfully on me. I am thankful for my current state of health. I’m grateful for all the people I met along the way and continue to meet.
I would love a time machine and be able to go back to a time when I thought life was tough.
I guess I say all of this to emphasize not taking the simple things in life for granted. It’s stupid to complain about some of the things complained about. Perspective. Not everything needs to be blasted or complained about on Facebook or on the next Social Media site. Everyone has bad days and days where they aren’t feeling the best. I get it. We all complain. Your life isn’t ending. That run will always be there for another day. The gel will wash out. Use that garbage disposal, called the dog, to help you clean up those Cheerios. Sometimes, you just have to accept that which you cannot control. Doesn’t mean it needs to be treated like the world’s going to end. I’ve had friend’s text or email with this or that, and honestly, I have to laugh. Yup, it sucks. Unfortunately, that’s life – full of unknowns and curveballs. If only you knew. If you cannot workout, listen to your body and let it go.
I’m alive, healthy, breathing, blessed, and thankful for my journey and what it’s taught me. This is my journey and my new life. I will find my new self, continue to move forward and become an even better person.
There’s plenty to take from this blog post. Some are going to attack me personally for what I’ve written, feel like they can’t come and “complain”, some may even stop talking to me for my bluntness. I don’t care, that wasn’t my intention at all. I’ve learned there’s more to life than that petty and insignificant ant hill standing in the way. I’ve lost plenty of friends, even best friends, that losing one more won’t offend me. It’s a reflection of you and you’re character, not mine. I have stepped away from social media. When I’ve gone on Facebook, I’m happy to see friend’s successes and failures, and life events. It’s hard to weed through people’s complaints because I’ve gained a perspective and wish so much so that others could be gracious and thankful for their accomplishments and minimal setbacks instead of having to go through something like my sister and I have had to go through. Get a grip on life, step outside your world, and gain a bigger perspective. Being consumed with the trials and difficulties in life causes you to miss the blessings that are always present. It may take some looking and may not always be as bright as we want, but they are always there… just have to open your eyes!
the good, bad and ugly!
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!
My Unfinished Symphony
Lately, my life’s music has been more like jazz rather than pop, classical or whatever. If you know anything about jazz, it’s all spontaneous, random chords thrown here and there, things mismatched, random solo outbursts between instruments, piano plunking away…I would love it if my story and life was a complete classical symphony. But lately, it’s a half-written, unfinished symphony. The musical lines are twisted, tangled and unresolved. My eraser is my biggest friend as I’m constantly rewriting chords and phrases. I cannot predict things and there are too many unknowns. Jazz is known for its improvisation and the performer’s own interpretation. Right now, I’m doing a lot of improving and figuring things out as I go. Many phrases and chords are unsettled. Movement One in this symphony still has yet to get a finishing cadence, unlike the last page of a finished book. I may never get that perfect cadence of my symphony, so I may just have to learn to love jazz and accept the unfinished cadences and chords. Life is confusing, messy, and full of unknowns. But, lately, I’m learning there’s nothing wrong with that and having an unfinished symphony.
Forgive me for being rather quiet on my blog.
I’m mentally trying to prepare myself for this surgery that’s right around the corner. I should be excited to get my implants. After all, I’ve been joking about it for the longest time. I am, but at the same point, I’m not.
I had my pre-op appointment bright and early this morning. It was at the hospital that I had my surgery at. I was excited while driving there, because this is one step closer to surgery, new fake boobs, and this all being behind me.
That moment when you walk into the hospital, check in with admissions, are taken to the third floor to the pre-op/surgical center, get taken back to a room while walking passed all the rooms I was once in, and smelling that familiar smell…all while trying not to cry, puke and run…
The last time I was on this floor was back in September when I was checking into the hospital and saying goodbye to me real boobs. There was something about being in the surgical wing, smelling that smell…
I wanted to cry. Being in that same area brought back so many emotions. Anytime I’ve been to the hospital for physical therapy or post-surgery visits, I’ve been able to subconsciously ignore that hospital smell. This time around, the all-too-familiar scents and visuals of the third floor made me want to puke. The smell there was completely different from the other floors! I don’t like hospitals ever since September.
I texted a friend and told her I was going to puke. She was extremely supportive and positive. She told me it wasn’t crazy having those emotions. I had a traumatic experience there.
Things changed when one of my favorite surgical floor ladies walked in. We caught up and she made a lot of notes for this next surgery. She even gave me a prescription for some patch I have to wear prior to surgery to prevent me from getting extremely sick. She also ordered more blood work. Apparently when I went in for surgery back in September, I had some low blood count numbers. They needed to draw blood today to see where things are at. If the numbers come back low, I guess I’ll cross that bridge. I should have asked more questions about that.
I still feel like I’m going to puke after being there. I don’t have an appetite. I didn’t think being on that floor would affect me like that.
I left and drove up the lakefront. I had no destination in mind, but just wanted to drive. Normally when I want to clear my head, I hop on the bike; it’s too cold and windy to do that now. So, I aimlessly drove north along the lakefront for a while, turned on my favorite music, and eventually headed to a favorite thinking spot. My brother and I would cruise in his go-kart of a car he built and head up there during the summers. We’d walk out to the lighthouse and sit and talk. It was too icy and slippery to walk out there, but, I hung out there for a bit, listened to the waves crashing in, and reflected.
I’ve been told this second surgery is way easier than the first. It’s not a 7 ½ hour surgery again with any overnight hospital stays. It’s maybe a 3-4 hour surgery and outpatient – I get to go home the same day! He’ll be taking the expanders out, putting the implants in, and transferring fat from my belly to chest area to even out the new rack. I have ridges and indents that need some work. However, the thoughts of no sleep again, not being able to wash my own hair, having to deal with drains and those incisions, having raw and sensitive skin, sleeping on my back again when I’ve finally figured out how to sleep on my side…and the list could go on, doesn’t excite me.
The drains are the worst and I can see why people don’t do reconstruction. I’m still having issues from the drain incisions the first time around from the scarring and how Dr. S had to put them in me. He had to go through my rib cage and oblique muscles to get the tube up and around the expander. They were placed through the incision and sewn into me with stitches. They pulled and snagged. It was extremely uncomfortable. I’m a tough cookie and always handled pain well. However, the drains were depressing. The thoughts of having them again are depressing.
I never want to see gauze or tape in my lifetime again. Ever. The thought of having to tape the drain incisions and ripping it off raw skin every day, makes me cringe.
I gained a little weight after the first surgery from lack of activity…and maybe from too many fudge bars. But hey, they told me each popsicle counted as one fluid. Ha! I was in great shape prior to surgery and lost a lot of upper body after. I’m nowhere near where I was, but I’ve busted my rear to get it back at it and to lose those few extra pounds I gained. I’m not there and it’s frustrating. There are times I want to give up, but know I cannot.
I woke up and had some bad reactions/complications after surgery. The pain couldn’t be managed or controlled and I got extremely sick. I’ve already informed the hospital and my surgeon of what medicine they are not allowed to give me. After today’s appointment, the surgery center has notes and things on file! They reassured me this time around, I won’t get that sick and have reactions.
Psychologically, I’ve been working through accepting my new norm and body. I have my ups and downs just like anything in life. Every day I’ve been standing in front of a mirror and saying one nice thing I like about my body or simply looking at my scars. I’m in a way better place and can truly say I’m okay with them. I’m a symmetrical person and only wish the drain incisions were at the same spots on each side. Ha!
Everyone around me is super sick at the moment, and I’m fearful I’ll get whatever they have. I’m not allowed to take any medications until surgery. I’m not sleeping. I’m in pain again and can’t get comfortable. Damn weather changes!! Oh well, it will all be a thing of the past some day!!
I know some reading this will think this is petty. I’m sure once I’m on the other side, I’ll read this, chuckle and think it silly to have written this.
Like every obstacle thrown my way, I’m a fighter. I’ve been learning to accept the new limitations. Sometimes you have to push yourself outside of your comfort zone to learn things about yourself and see what you’re capable of. This has definitely pushed me, taught me much about myself, and shown me many things about life and the human body and mind. This will all be something of the past and I’ll move on to bigger and better things…and eventually face that moment and time to remove my other body parts that define women.
I should be happy about this upcoming surgery, but I’m not at the moment. I’m scared, but this is all another thing in my life that will make me stronger and something I can use to help other women. This is completely worth it when people tell me they read my blog and as a result they finally got that mammogram done they’ve been putting off. Or when someone emails to say it was refreshing reading my story and gives them hope for when they make their decision. There is beauty in this, even on cloudy days like today. I need to keep the finish line in perspective, which is hard to do at times with a blurred vision.
Someday, this symphony will get its perfect cadence and turn out to be beautiful. Until then, right now I’m going to enjoy the jazz improvisation in this movement, and learn to substitute dominant chords and nonchord tones to something beautiful. There’s dissonance right now, and that’s okay. This movement will get untangled, the chords will line up and make sense, and I’ll be writing the next movement in my symphony.
*Soon-to-be your BFFF (Best Foob Friend Forever)*
PS: my apologies for the music references. I was a music major in college and had years and semesters studying music theory and all genres of music.
PSS: Forgive me for my bad day! This, too, shall pass!!!
Things to Never Say…
To Someone Going Through a Double Mastectomy…
When I started opening up to friends about how my genetic testing results came back and I was positive, I got mixed reactions. From that day on, I used it as an educational means instead of getting upset. Do things still bother me? I realized there were plenty of ignorant and stupid people who didn’t care to fully understand or listen to what the “diagnosis” meant.
I don’t think the comments were meant to be hurtful. But, they can be especially when someone is about to embark on an extremely stressful, emotional and unknown journey. Like I’ve said in a previous post, the comments weren’t a reflection of me; it was a reflection of those that said them.
So, let me educate you on what NOT to say to someone watching a sister go through breast cancer and someone about to go through a preventative double mastectomy due to being BRCA1 positive. Continue reading
What I’ve learned being a Previvor. Happy Two Months :)
Happy two month birthday to my dear Rocks (expanders)!!!!
Today marks exactly two months since my prophylactic double mastectomy and I’ve learned a heck of a lot. I educated myself prior to the surgery and sort of knew what to expect based on other’s stories. But, I quickly learned that my recovery was/is so different from someone else’s, everyone heals at their own pace, and it wouldn’t be helpful giving a day-to-day update. I think you would be bored with my “Dear Diary” blogs…I can’t offer anyone a play-by-play as to what to truly expect after surgery, nor do I want to bore you with the details of every day life. I can give you a list of suggestions of things leading up to surgery (blog for another day), but can’t say for sure how things will turn out. I’ve tried to update on the big events – like jogging a quarter mile successfully, being able to open a store’s door without pushing the handicap button, etc etc. Accomplishing the simple things has given me way more excitement than the normal things…like today for example…I swam over a half mile and even swam 600 yards continuously without fins and I didn’t drown…
Anyway, here’s a few things I’ve learned the last few months…
1) Cancer in general and being a BRCA1 carrier scares people. People don’t know how to respond or what to say when I told them about Sarah’s cancer, my own genetic testing results and how I was doing the preventative surgery. I got blank stares from people with eyes rolling back. I had people say some pretty ignorant things like, “free boob job” or “change your diet and exercise more and you can avoid the BRCA gene turning into cancer.” Ummm, okay! I don’t view it as negative anymore; I view it as quite comical. People get uncomfortable and say things they shouldn’t have. People are just plain stupid.
I was really hurt and upset when people walked out of my life because of it. It was annoying. People don’t understand or know how to give sympathy (not that I was looking for any anyway). I’m looking at those that walked away as not knowing how to respond or simply ignorant. I’ve learned that it’s not because they don’t care – it simply means they don’t know how to respond, are clueless, or scared. I’ve learned their reactions isn’t in response to me or about me, it’s about them personally.
I’ve learned who my real friends are – they haven’t gone anywhere – they fought and went through this with me.
2) I’ve learned it is okay to have emotional outbursts and it’s a form of coping with things. Everyone’s journey is their own. At this stage in my life, most of my friends are seriously dating someone, engaged, married or pregnant. I’ve been told that a guy will come along and love me regardless of having my boobs or not. Yes, that may be true; however, it doesn’t mean that I still won’t have those thoughts and questions of “How will I date after this?”…”Will I be able to date after this?”…”Will a guy love me?”…”How do you tell a guy about this? When do I disclose it to him?”…too late… he can find my blog and it’s all out there anyway! Haha! I don’t have those answers and will cross that bridge when I get there!!
I’ve learned feelings and emotions aren’t facts and aren’t forever. They subside, rise, peak, etc. Some feelings take longer to process and cycle through. Doing this major of a surgery has me going through all kinds of emotions and feelings. I wouldn’t wish this upon anyone. I’ve learned I need to feel what I feel and trust myself that I’ll be able to breathe and grow from it.
I’ve said this before, I don’t cry often…but this surgery has done something to those tear ducts. I’ve cried for no apparent reasons. I cried when the pain couldn’t be controlled – morphine, Percocets, Dilaudid…and NOTHING’S working!?! It’s an emotional journey and it’s okay to let it out. I’ve learned to cope with the old and now new things that have come with the territory of such an extensive surgery. I’ve learned to not be so hard on myself and to truly show this side of me to others. As much as I hate being vulnerable, I’ve learned it’s truly okay to be vulnerable and let those walls down. You have to process anything major in life otherwise it can fester and turn into anger or bitterness.
3) Live life to the fullest, take chances and don’t take things for granted. I have a very hard time asking for help. I learned I HAD to let people help me because they wanted to be a blessing to me. I learned that I can’t rob people of wanting to help me out and give back. People cooked me dinners, came over to hang out with me when I was loopy and half asleep, drove me to doctor’s appointments, helped me clean my house, did my laundry, etc etc. The simple things like opening the refrigerator door and doing laundry were such huge, exhausting tasks. Making the bed was a cluster so I gave up and stopped making it. Washing my hair was annoying – I had to lean over the kitchen sink, have my mom or sister delicately massage my scalp and hair with shampoo/conditioner, be patient with me when I needed a break because of the pain. It was exhausting! I remember there was one day I just wanted to take a bath and was sick of the sponge baths. I was so excited to fill the bath tub up with a little hot water and bubbles. I took one of my race belts, attached the drains to it with pins, and then attached the race belt to the toilet thingy so I could relax. It was quite humorous when it was all said and done. Getting out of the tub was a cluster and I’m surprised I didn’t bust my junk! I couldn’t push up with my arms and I had to do a Turkish get-up to maneuver myself out of the tub. I made myself laugh. I learned I can’t take anything for granted.
4) Laughter is the best medicine. Throughout this whole journey, I’ve learned that just because I’ve lost my boobs doesn’t mean I’ve lost my sense of humor. Two weeks after surgery, I was walking around my parent’s house with just my surgical bra and drain tank top on. My youngest brother walked into the house, laughed and said, “Welcome to junior high. How do you like it?” I didn’t know what to say but laugh. It was hilarious. I honestly looked like a kid starting puberty. After I got the drains out I was finally allowed to wear sport bras. I had to get certain ones and so off to the store I went.
Me: Hey Mom, I kinda like these sports bras because they come down all the way and don’t hit my drain incisions.
Mom: Oh. Did you get them in the kids department?
Me: (Speechless and laughing so hard I almost peed myself)
Mom: Well, Hannah, at least you’re a good sport. See what I just did there? Sport…bra…
(Both of us dying uncontrollably from laughter)
Oh, and these were only a few of the funny moments…
5) The absolutely worst part of the surgery is the fear and anxiety leading up to it. I can’t even put into words how scared I was prior to surgery. The anxiety that comes with such a high-risk of knowing I would get cancer someday is completely indescribable and can’t even be put into words. Each doctor appointment prior to surgery left me numb. I stressed about a lot of things and had to learn to chill and let go even more of the things I couldn’t control. Life isn’t always “good.” It’s okay to stress, have some fears, but it’s not okay to let them dictate your life.
6) You get used to your new norm – the norm of having lopsided “boobs”, scabs, scars, and less upper body strength. Is the new norm ideal? No! You will be a delicate person after. My new norm is NOT wearing a bra and I LOVE it…(be jealous!). The first time I saw I myself was a few hours after surgery. I wasn’t fully awake or with it and I thought, “hmm, not bad. I look like I’m 12 all over again.” Fell asleep and didn’t have a chance to really think about it. Well, when I truly saw them and the scars, drains, and black nipples, I freaked a little bit. While in the hospital I didn’t recall having black nipples! Well, they scabbed over (which was expected). It’s the norm for some. The new norm is to not have any sensation or feeling in the chest area. My sister thinks it’s the funniest thing to come up to me and pretend poke me, like the kid pointing the finger saying, “I’m not touching you.” Well, there’s times she “pokes” and I can’t feel anything. They say I may get a little sensation back, but I don’t think about that. Less stress. If it happens, it happens. After surgery, the new norm was having issues in my right armpit and hearing it potentially could be permanent. I have learned to deal with the pain and not make it an issue.
7) Be proactive rather than reactive. Being in the BRCA club isn’t a club I’d recommend for anyone. In fact, I wish I didn’t even have to be a lifetime member. I’m so thankful my sister, Liz, is negative for the gene. If you’re a member or become one, please fight for your health. Listen to your intuition. Trust your gut. Don’t let the negativity of people and opinions affect you. Take control and be your own voice with doctors and fight for yourself with insurance companies.
I had to have my doctor’s/surgeons send numerous letters to my insurance to get the surgery covered. I got the approval and then would later receive a denial letter in the mail. I’d have to fight on a weekly basis.
You’re your own voice. Get routine mammograms, MRI’s, transvaginal ultrasounds and the CA-125 blood work done twice a year. Do self-exams monthly. If you notice anything unusual, please get it checked out right away! Don’t wait. You’re your own advocate.
8) Doing this surgery has given me a platform to talk and be passionate about something that means a lot to me. At first I was very hesitant to share my story. When I finally shared it, I received mixed reviews and that bothered me at first. Well, to those that gave me crap I said, “Screw it. I don’t need you in my life anyway” and so I let them go. When random people would look at me funny for asking for help opening a door, I simply would say surgery! They would follow it up with “what kind of surgery.” I didn’t know how to respond so I ignored their question. The running joke with a few friends was surgery through my armpits…now I just bluntly tell people about it and total stranger’s responses are so supportive and kind. I am so thankful I started blogging and sharing my story. It’s so rewarding when people shoot me emails of how the blog and story has helped them or give them a perspective on something they didn’t even know about. Awareness. I find writing and sharing my story has opened the door to healing. Honestly, it’s an honor sharing my story!
9) You will be changed – for better or worse. I have a new respect and appreciation for my body. I have learned more about myself in the last few months than ever before. My life has forever been changed and so has my body. Knowing the what-if’s and odds being against me really opened up my eyes to what I have around me and appreciating the small things in life. Letting go has been the theme of my life since 2012. Letting go of things I cannot control, circumstances that have happened to me in the past, people that no longer add to my life, etc etc. A mastectomy only removed my breasts; it doesn’t change my inner being. There are two options coming out of something like this: 1) Changing for the better, letting the situation have a positive outcome, and using it to educate others and 2) Allowing the situation to take control and becoming angry and bitter. I feel I’ve come out of this situation completely changed and for the better. I’m a better person now and have used this as a platform to help others.
I’ve learned much about myself through this journey. I’m a fighter! I’m strong. I’ve vowed to live my life differently and without regrets. I’ve learned to embrace the present moments and never let go of the good. I’ve found a deeper meaning to life and how I can help others. I’ve learned a long time ago that everything happens for a reason – whether I know now, down the road or never know why.
I may be physically altered on the outside and have scars, but deep down I’m the same person if not a better person with a better outlook and view on life. I’m learning to accept my scars, not have shame in them, and love my body. I thought I would wake up fearful of what I’d look like and life after would be different. Yes, it has to some extent. Prior to surgery I fell into a trap that everything after would be better, like the fairy would bring out the wand and pixie dust and fix everything. I still look like my normal self and have had some changes that only I know and can see. But to the outside person looking in, I have boobs and the same physical appearance. I didn’t get magically taller…or lose the inner tube called love handles…or lose my thunder thighs…This surgery doesn’t define me and it’s not like I’m wearing a scarlet letter on my chest. Don’t get me wrong, it’s a life-changing event and I don’t want to diminish that; but I came out of surgery as the same, if not, an even better Hannah.
10) Cancer sucks, and that is something we all know. Is life fair? No, but He never gives us more than we can handle. I’m thankful I was on the front end of this and not where my sister is right now. I wish everyone could be on the front end and take preventative measures. If it wasn’t for my sister getting cancer and testing BRCA positive, I wouldn’t have been in such a rush to get the testing done. I would have been passive and waited. It’s a big deal to get tested and know. You don’t want to hear the words you personally have cancer or someone very close to you. I wish my sister didn’t have to go through what she did. If anything, I wish I could have taken it all upon myself and gone through it for her.
A friend’s mom recently passed away from her 3 year fight against breast cancer. When I heard the news I cried. I wish there was something I could do to take the pain away from her and her family. I can’t. Another’s friend’s daughter is fighting for her life and hoping they can hear the words, “She’s in remission.” Another friend’s cousin passed away a year ago from cancer. One of my best friend’s cousin’s passed away three months ago. Another amazing friend, Nikki, lost her daughter to cancer 5 years ago. Cancer sucks.
I hate cancer and what it does to individuals and families. I hate seeing my friend’s in pain. I just wish I could take it all away.
There’s much more that I’ve learned, but this summarizes it in a nut shell. I’m learning and my new norm is getting better. I know what I went through is 100% worth it and I don’t regret my decision one bit. I’m extremely blessed and thankful to be a Previvor.
Those of you that are debating about doing the surgery, I’d like to share my favorite quote with you…”You don’t need permission to start. You control the starting line. You don’t have to have it all figured out. You’ll figure it out along the way. Ready is a myth” ~Matt Cheuvront
My words of advice, for those of you who will watch someone go through this or make the tough decision, is you don’t have to have the right words to say, have all the answers, or take away all the pain and stress that comes with this. Simply be there for them and listen to them. You don’t have to always be responding back with cliché sayings that everything will be alright or whatever. Support their decisions – whether you agree with them or not. Listen to them. Pray for them. Pray with them. Encourage them. Love them. Be there for them.
Cheers to my Rocks! Thank you for teaching me much about life, about myself, and that scars are a beautiful thing. Happiest of birthdays to you!
ouch. fills. need i say more.
I had no clue what to truly expect at these fill appointments. My doctor filled me 200cc’s at the time of surgery. I would only need two more fills unless something went wrong.
I laid back and he brought a magnet and place it over my breast right above the nipple. Once it lined up, he marked the spot with a special pen and brought over a needle connected to an IV. He poked the needle into the spot, which was where the port is, and let the IV hang. From there, he attached this large syringe and started filling the expander with saline. Because I don’t have much feeling in my boobs, I didn’t feel him poke the one breast, but sort of felt the other. It’s really weird.
In my research leading up to surgery, I read online and talked to various women about the fills. Some ladies said it was awful and painful, while others said it wasn’t bad at all. The majority of them said it got more painful as you went along. Yep, they were right.
My friend Jen took me to my third follow-up appointment on September 26th, which was to get the rest of my grenades (drains) out. They took one out the week before. The doctor and his assistant looked at how I was healing, took the remaining 3 drains out, and hemmed and hawed as to whether or not they were going to fill me also. Most of the time they’ll take the drains out and have you come back at another time to get a fill. I was lucky. They determined my skin and body could handle the fill…only two and a half weeks post-op?! Perfect. I’ll take it.
85cc’s later, I developed the training bra boobs. I walked into the waiting area, laughed, and said to Jen, “Look, I have something”, while pulling my top tight against my chest. I laughed, she chuckled. I think I may have embarrassed her…I’m not so sure the rest of the people in the waiting room thought it was funny. We left and grabbed lunch at this place I’ve never been to before. The ride home didn’t go so well. I didn’t feel well and all of the sudden she’s pulling over on the side of the freeway and I’m outside the car hurling.
I was so sick the next 24 hours. I couldn’t keep anything down nor could I sleep at all. I was extremely uncomfortable. I called the doctor and let him know, and he said it was really odd I was puking. If I didn’t stop vomiting over the weekend, I’d have to come back on Monday for him to take some saline out.
Thank goodness I didn’t have to go in that Monday! I had some overall tightness in my chest but it only lasted a few days. The pressure and pulling did me in, but thank goodness the puking stopped. Who wants to take a few steps back in the recovery/fill process?!
This leads to October 17th – my FINAL fill. He filled me 115cc’s!! Yay!!! This one sucked big time. My rocks are completely under the muscle, are miles apart, and bulge out a bit under my armpit. By making the rocks bigger, it’s pushing on the muscle as well. The muscle wants to retract back to where it was which causes the terrible pains. My total rock size is 400CC. At the time of surgery, the doctor filled me to 200cc because he knew my body could handle it. Mom said he came out of surgery super ecstatic. He doesn’t get to fill them that “full” like that that often.
My rocks are hard, uncomfortable, and sore. Before my rocks had some give and take. They’re hard because the shells are thicker and less flexible as they fill. Two days later and I’m in the most pain I’ve had in a while. I cannot get comfortable when I sleep and the rocks put pressure on my sternum as well as pull on the sternum/chest wall.
Please don’t take this as me complaining. Many of you have asked how I’m doing and this is me being completely honest. I knew going into this surgery that it wasn’t going to be a walk in the park. This is the worst I have felt since coming out of surgery. My chest and upper body hurts. I cried Friday night. I’m sore. My chest is unbelievably tight. Things are being pulled in every direction possible. My skin is even more super sensitive than it was. My armpit pain came back with a vengeance. It’s been something I’ve been dealing with since the surgery, but Friday night I could barely move my right arm without a shooting pain or it going numb. Despite all of this, I’m staying positive, cracking jokes, laughing, and taking it one day at a time. On the bright side – I have some boxy boobs now.
I’m living my life and keeping myself busy to be distracted from the pain. My physical therapist told me to keep active and moving. This is my new norm right now and I have to cope and accept it. I’m going to continue doing my therapy exercises, walking 3-4 miles on the treadmill, and “killing my legs” as PT called it. I’m cleared to ride my bike on the trainer, walk/jog, lift my 2 pound weights, and do any kind of leg routine I want. I’m just not allowed to swim (aww, shucks!) and do a whole lot of ab things. Everything is done in moderation. I’m given an inch and will NOT take a mile. Promise!
Things will get better…eventually. For now, I’m going to thank my lucky starts to be alive, breathing and healthy. I’m going to enjoy my firm jugs and lack of having to wear a sports bra…well, actually, I can’t wear them anyway due to the super-sensitive skin. Darn.
If you were to ask me if I’d do this all over again, I would say yes in a heartbeat. If you were to ask me if I could have changed and gone with smaller fills, I’d say no. Go big or go home. I trust my doctor and am completely happy he felt I could handle those amount of fills. All of this pain is completely worth it. I don’t have to worry about the 87% chance of getting breast cancer in my lifetime.
I’m done with my fills and now it’s a waiting game. Everything needs to settle. The reconstructive doctor and I haven’t decided what size boob we’re going to go with. I’m totally comfortable with him making the final call. I have some more follow-up appointments down the road and from there he’ll decide when we can move forward with the exchange surgery. This second surgery seems like a lifetime away. It’s typically an outpatient surgery where they exchange the expanders for saline or silicone implants.
How Far Would YOU Go?
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…