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
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!
(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.
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!!!