I couldn’t possibly count the number of times I’ve been asked “How are you feeling?” since June 1. It’s at least a million. And I’ve answered this question so many different ways over the last four months.

how you doing

The truth is, people actually ARE interested in hearing how I’m “really” doing, but most don’t expect to hear what I tell them… they are surprised and intrigued.

At the moment, all things considered, I feel pretty excellent. But it feels like it’s taken longer than four months to get to “excellent…” I feel like I’ve been dealing with breast cancer forever.

This is my new normal.

Since I’ve shared mostly everything that’s transpired since June, I figured I’d backtrack and describe what I haven’t.

Let’s start with the physical stuff… how does it FEEL.

let's get physical

I may have handled my surgery and recovery very well, but don’t let me fool you… having a bilateral mastectomy is single-handedly the most excruciatingly painful experience one may ever endure.

I’ve asked mothers who’ve experienced both childbirth and a double mastectomy, which is worse? Unanimously, they’ve said the surgery is worse.

At least now I know delivering a child will be a walk in the park.

My first week home, I felt better than expected during the day. But come 7 p.m., like clockwork, I’d feel achy, flu-like, and would need to nap until about 10 p.m., then I’d wake up feeling fine and would stay up all night long.

Even though I was somewhat warned, I never expected the kinds of physical limitations I’ve had. Aside from the fact that a vast majority of the tissue that comprised my chest has been removed… my pectoral muscles, which for my life have been buried underneath that tissue, have now been moved to the front of my chest and are being purposely stretched to make room for implants. And with every movement, I feel those traumatized muscles, flexing and contracting, in a way I’ve never felt them before, from across my chest all the way under my arms. It’s WEIRD.

arnold

Movements you never even think of impacting you, do. This is why the doctor says, for three months following surgery, there’s no aggressive pushing or pulling, reaching up high, etc.

Immediately following surgery, you physically can’t use your arms for anything. The second day I was in the hospital, I quickly got rid of the hospital gear in exchange for my own clothes — a zip-up tank and yoga pants (obvi). The zip-up tank was smart, but the yoga pants not so much… I was finally able to walk to the bathroom by myself, but couldn’t pull my own pants down — who would have thought.

Drawstring PJ pants would have been better…

You can’t rest on your elbows while getting out of bed and the pain is too severe to sleep on your side… I slept on my back for two full months.

Ever try to get out of bed without using your arms or without rolling onto your side to ease yourself up? Ever try laying down and having your head hit the pillow exactly right, without using your arms to lower yourself down?

Try it… you quickly become fantastic at inching yourself everywhere using your ass.

i can't get up

Getting dressed was frustrating and painful, especially with drains in. Putting clothes over my head was so complicated in the beginning… you need to wear sports bras to keep everything tight, but you need to be able to stretch them around your shoulders to actually put them into place, and you obviously cannot get dressed alone… you need someone to help you. That’s why it’s just much easier to go out and buy front zip-up sports bras. Showering was challenging because it’s difficult to twist or lift your arms to wash your hair or reach your back. Every day got a little easier.

After about 2-3 weeks, the pain changed. Maybe the old pain just became tolerable. The skin where my breasts used to be, and all under my arms, felt like the bad sunburns I used to get as a kid when we’d visit Florida… the kind where you cannot have clothing touch it. It made me want to crawl OUT of my skin. And the muscles in my armpit area, which were numb to the touch, felt constantly engaged and sore. Without realizing it, your body naturally braces itself to deal with the pain, and so muscles you’ve never engaged, now do all the time. And it doesn’t feel like that “I just left the gym” sore… it feels annoying. I was constantly bending forward at the waist to dangle my arms and would have walked around like that forever.

mummy

Sitting or laying down doesn’t alleviate that underarm sunburn feeling either… for that period I needed several small pillows I took home from the hospital to prop my arms up, and usually that only felt good for about 15 minutes and I’d need to adjust. Annoying is a severe understatement.

These are the times you medicate yourself to sleep.

the wonderfuls

To make matters more annoying, right now I have temporary tissue expanders in my chest, underneath my pectoral muscles, which are creating room for softer implants. The “exchange” surgery, when the doctor swaps the expanders for implants, takes place at or around the three month mark. Even though right now they look halfway decent, they feel like shit.

tissue expanders rock

They’re made of plastic and feel like two, well, ROCKS, that don’t move at all. When I still had my drains in, one of the drain tubes was resting on a raw nerve underneath my right expander, and every time I had to sit up, using no arms and only my core muscles, the expander would press on the tube, and the raw nerve, sending a pinch that felt like a hot poker in my chest… and all I could do was wait and breath the pain away.

Other than that, having drains in did not hurt, they were just disgusting and annoying to have to hide under clothes, shower with and empty. After a while, since my drains apparently didn’t want to come out, the area where they were stitched in got a little sensitive, and I’ll definitely have scars where they were.

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Oct. 3, 2015… bras are for posers… scarred side-boob is so hot right now…

The expanders were filled about halfway during surgery, and my plastic surgeon started further expanding them with about 50 CCs of saline on each side, once a week, until maxed out. It took several weeks and yes, this process is uncomfortable.

The expanders have a little reservoir with a magnet attached it it, so when the doctor needs to fill them, he runs another magnet over the area to mark where to stick the needle. My skin was not completely numb where he stuck me, so it hurt for a few seconds. Then for the day or two after, my chest felt extremely tight. In the earlier days, I was also pretty sore afterward… sore enough to need pain medication. You kind of feel like this afterward.

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Sept. 6, 2015, max expansion… finally got that bathing suit body I worked so hard for…

The money question is, how big will I be when the implants go in? The answer is, I have no idea… I’m just happy I never have to wear a bra again if I don’t want to… like ever.

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I’m done expanding and have seen an occupational therapist and a holistic healer to improve on my range of motion. Right now, movements like opening a jar (or a wine bottle), cleaning the counter or turning the steering wheel are still difficult and I can’t stretch my arms completely up or out the way I used to. The holistic healer blew me away. He spent 90 minutes with me in my home and did a combination of spiritual energy cleansing and targeted acupressure and acupuncture to my arms… when he arrived I couldn’t raise my arms higher than my shoulders and couldn’t form a T… when he left, I could raise my arms above my head and the next day, my last drain came out (finally).

It was expensive, but worth every penny.

So now that the actual “healing” pain is done, I’m just very stiff and still have involuntary muscle spasms across my chest. My nerves are also coming back to life, a great sign and one my doctors did not expect, but one that’s also painful. When the nerves fire, it feels like an electric shock. Earlier this week, the pain woke me out of a dead sleep. I guess I should be grateful?

This month I also started having phantom itches, probably also related to the nerves trying to find each other… the skin under my arms, or over the expanders, gets really itchy, and when I try to scratch it, the skin just feels completely numb… can’t even find the itch. Everyone knows what it feels like to have an itch you just can’t find… it’s torturous.

itchy

I just keep reminding myself, and my parents have reminded me too… IMAGINE I’d had one of the more aggressive reconstruction options my doctor was originally encouraging me to have… I’d be in much worse shape right now. The research I did in advance of my surgery was invaluable.

I also harvested my eggs in September so I could start Tamoxifen. This process was both unbelievably impressive and annoying. I wasn’t thrilled to have to inject myself with hormones, but I thought that would be the hardest part. That part was actually easy. I also thought I’d be a severe mental case, which didn’t happen either (true story).

Luckily my body was preparing to push out 18 eggs (YUP, that number again…) and so one day I woke up with this incredibly bloated feeling… the doctor warned me that in a few days, “Ï’d probably feel ‘a little pressure…'”

Yea… I felt more like this.

My belly was bruised all over from the injections, and my arms were totally bruised from daily blood work (yes, daily). I was put under for about 10 minutes in order for the doctor to extract the eggs from my ovaries using a needle. When I woke up, that “bloated” feeling was multiplied by 100. That pain lasted about a week.

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Sept. 30, 2015… “I woke up like dis” after having my eggs harvested

SOOOO… that’s the physical “feels…” Mentally, how have I felt?

Up and down.

I was so optimistic when I left the hospital. I’m spiritual, but I wouldn’t consider myself super religious… I’ve learned there is something to be said for people praying for you. Praying doesn’t have to be about God, or believing in a deity. But the power of positive energy being directed at you, or for you, cannot be denied.

It’s what helped get me through my hospital stay, and the tough week that followed, when my doctor broke the news my cancer was invasive.

That same weekend, when my best friends whisked me away to the Hamptons to help me forget about my shitty situation, I had time to reflect, and enjoy the sun. And at one point, while I was sitting by myself, at the pool’s edge, sipping expensive champagne in my underwear, trying to wrap my brain around why I deserve any of this, this song came on… and I started to sob. And now every time I hear it, I remember that moment, and that feeling… it wasn’t a sad, wallowing feeling… it was an eternally grateful feeling that I have people in my life who love me enough to drop everything to do whatever it is I need them to do.

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Life is hard. My year has been very hard. But I’ve never once had to deal with it alone. If I’d had nobody, I don’t think I’d have survived this year. And guess what… lots of people had hard years. Many people had a harder time than I did. I have a lot to be thankful for.

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Over the summer I also felt conflicted. Moving back into your parents’ home at 33-years-old and needing them to do every single thing for you, is not easy. My parents are the most wonderful, giving and considerate people in the world. But they are also parents. And I’m their baby who they will never stop worrying about or wanting to take care of. And parents inherently feel that they know what’s best for their children. In most cases, they certainly do. But everyone kind of reverts back to the time that you used to live together… back when you were still a teenager with little life experience, little responsibilities and little independence.

It’s a huge adjustment and everyone needs a lot of patience.

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In a lot of ways, I just wished for my former life back. I wanted Duane to be there, because he’d know exactly what to do, and when to do it, without me having to ask him. It was tough getting used to having to live without him, and I’m still getting used to that.

In early October I came back to my house in Beacon. I’ll be here until my next surgery in late November. I’m THRILLED to be home.

I have my independence back.

I have privacy.

I have a lot to look forward to and clarity to plan what I want the next few months, and years, to look like.

I’m doing the things I love — spending time redecorating and reorganizing my house, and getting to do all the little things you put off all year round because you just don’t have enough time to do them.

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I’m enjoying the Hudson Valley to the fullest — I live in heaven on earth and my town is full of creative, kind, young, self-sufficient people. I’m soaking every ounce of it in.

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Taconic State Parkway, Oct. 2015

I have to see the lessons in every experience, and I hope you do too. It’s not just lip service when people say, what doesn’t kill you makes you stronger and that everything happens for a reason. Those statements are true. I’ve spent a majority of my adult life focused with my head down, grinding the gears and doing what smart, experienced people told me were the right things to do. I’m grateful for the guidance, but when you live life with your head down, you miss a lot.

I’m experiencing what it’s like to actually put yourself, and the things in life that matter most, first. I’m challenging myself by doing the things that my gut tells me are right, even if they aren’t the most popular choices, rather than going with the crowd.

I’m ironically excited for my next and hopefully final surgery, and looking forward to spending quality time with my family and friends this holiday season. I’m eager to pay it forward more and practice more thoughtful behavior with those who showed me the same kindnesses this year.

I’m ready to close this chapter in my life, and embark on the great things to come.

Namaste ❤

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10 thoughts on “this is what it feels like…

  1. Wow, Mary, another powerful message! You have been yet another learning experience for me as a mother, a woman and nurse. Thank you for your love and insight. You have amazed me, literally, from the day you were born! xo

    Liked by 1 person

  2. Way to go Mary! That’s why Xena the Princess warrior ain’t got nuthin on you my dear Warrior Woman. Your journey has been a living nightmare! What’s amazed me is that you always looked beyond and saw Victory! Thank u again for sharing with us and allowing us to take a peek. Boy have I learned…
    I admire you and send positive energy your way. Your PR cousin, Laura

    Liked by 1 person

  3. I love reading these. I understand a lot of what you are saying here… Not being the patient but being the wife… And looking at life different now. Thank you for these wonderful blogs! They are inspiring.

    Like

  4. Mary
    You don’t know me
    But
    I grew up with your Aunt Tea
    I also had Breast cancer with reconstruction
    You are my hero
    Best of luck to you and if you ever want to talk
    I’m here for you
    Your new BC survivor friend
    Carol

    Liked by 1 person

  5. You have written this so perfectly well. I’m 43 and Have had three c-sections and a recent double mastectomy. This is way worse. You nailed the experience perfectly. Reading your blog has been an inspiration. Stay strong tough girl!!!

    Like

  6. sallie, thank you so much for the kind words. i’m glad my blog has helped you! i wish you good health and a smooth, speedy recovery. hang in there, every day gets a little better ❤

    Like

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