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!
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!
Monday morning, December 29th, I had surgery to swap out my rocks (expanders) for nice, squishy implants. I woke up super early and followed doctors orders – shower with this special soap and put this prescription patch right below the ear. Done!
Mom and I arrived at the hospital around 5:30 and I checked in immediately. After that, we went to the third floor to the ambulatory surgery center. The nurse assistant, Daphne, took me back to my room and I changed into the gown, walked to the bathroom for that happy dance (pee in a cup), and back to the room where I settled in. Daphne and I got to know each other pretty well after my first surgery when I had to go to the ER and spend the night. She and I caught up on Monday. She’s a breast cancer survivor herself and I got her to commit to doing Team Phoenix. I told her I’d train with her and help her get back into fitness. She hasn’t done much and was really excited when I said I’d do whatever it took to help her!!
The nurse eventually brought me two pills to help combat the nausea and an Ativan to calm my nerves. Shortly after that the anesthesia doctor came in for a visit and to confirm what he was going to do. He was already aware of what happened last time and reassured me he was going to give me a different anesthesia so I wouldn’t get sick. My favorite nurse came in and we chatted. Valerie is another sweetheart and puts me at ease every time we talk. She’s kind, compassionate, and encouraging. She’s always telling me I made the right decision and how proud she is of me.
Dr. S came in a few minutes before surgery was to start to mark my chest and my stomach for where he’d be taking the fat out. The incision would be through my belly button and he’d pull fat in the general area and transfer it to my left boob area. The left needed the most work; it sunk in badly! He also marked the right and left love handle just in case he needed to pull fat from there as well.
The nurse and anesthesia doctor wheeled me out of the room and down the hallway to the operating room. I actually remembered it this time because I hadn’t had the knock-out medicine yet. He couldn’t give it to me sooner because I needed to be marked and plus my IV needed to be flushed a few times. Speaking of that, it hurts like none other…and as a result my hand has a HUGE bruise on it. Ouch! I made it to the room, met the team, and even made it on the operating table all by myself. They moved me, hooked me up to machines, put a few patches on me…and la-la land I went…
3 1/2 hours later, surgery was successful…AND, he even got me bigger than anticipated. Sorry, no Pamela Anderson boobs. 2 1/2 hours on the left, 1 hour on the right. The part that hurts the most, believe it or not, is the stomach where he took the fat. He had to take more than anticipated (no arguments there). Originally he was only going to have to transfer fat to the left boob, but the right needed work after the implant was put in.
My stomach from the belly button down and to the right hip is really swollen and bruised. I look like I’m 4-5 months pregnant. It hurts. I can only wear loose bottoms otherwise I’m in excruciating pain. My arms and chest don’t hurt as badly as the first surgery, but there is still pain. A lot of bruising at the fat grafting incisions. Total incisions this time were 8 – one under each boob, 1 fat grafting incision at belly button, 3 fat grafting incisions on left boob, and 2 on right boob.
I’m incredibly thankful he didn’t have to take fat from my left love handle area. He marked it and the incision would have been right on my tattoo I got shortly after Sarah was diagnosed and I found out I was BRCA1 positive. I’m super elated I didn’t have to have drains this time around. Like I’ve said before, drains suck BIG time.
I had to leave the original bandages on for the first few days, so I didn’t get to take a look. I’ve seen them now and the foobs look good. Actually, let me clarify, I’m happy with how they turned out, but haven’t come to terms or accepted the new girls. I hope, someday, I can learn to LOVE them. Every day I have to put new gauze and tape on over the incisions and wear this Granny surgical bra to keep the girls tucked. I won’t be cleared to do things or go back to “normal” for anywhere between 2-4 weeks.
It is so awesome to no longer have rocks in my chest! I can’t even describe the feeling. This surgery was a breeze compared to the first one. There’s still a lot of pain involved and I’m taking a few steps back, but it’s completely worth it. I’ll be back to working out, eventually. My body needs to heal, considering I had two major surgeries in three months time. There’s no pressure! I’ll bounce back (literally and figuratively)! Ha!
Anyway, that’s all for now. One of the side effects of the nauseau medicine is blurred vision at night. So, with that, I’m going to take a pain pill, get comfortable in the recliner, and pass out for a little bit…hopefully…lack of sleep seems to be the story of my life again.
Tits (aka: Firm Jugs)
(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.