ONE YEAR LATER: What it feels like

Hi all: this entry from me is to help women who are preparing for the ‘other side’ of the mastectomy journey.  A little different from the usual “MB4M” post, but hopefully helpful!

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This was the week for bilateral mastectomies.

 

I received a beautiful email from a woman who wrote that she had been preparing for her own mastectomy, and she had been using my blog as a means of support and encouragement. So, the night before her surgery, she emailed me to tell me that.

 

Funny, I had done the same thing to a woman who’s blog I had been following. The night before my surgery in 2010, I tossed and turned. I finally got out of bed, made my way to the laptop, and emailed the woman who, virtually, guided me through my process. I hit send, went to bed, and fell soundly asleep until it was time to get dressed for the hospital.

 

There is some sort of shared experience about the possibility of dying that really makes you want to thank people.

 

The woman’s email to me got me thinking about the experience post-surgery. I have had two friends have  their bilateral mastectomies this past weekend, and one other friend who is considering the surgery next year. They’ve been pouring over the “how to prepare” advice; and so I thought it would be timely to write about what it actually feels like one year later.

 

Disclaimer: I intentionally am not going back into the blog archives to check out how I was feeling those days. Rather, I’m looking back. I’m reflecting on what it feels like — now — back then.

 

Those first few days

I remember feeling like someone had cut me open, ripped out my boobs, stuffed some things down there that didn’t quite fit well, and then wrapped me up. Easy enough. I recall stating “I feel like I’ve been stabbed” as a way to explain the kind of pain and sensation I was having.

Physically,  I remember being thankful that I had some good abdominal strength to pull myself up. I knew I had done what I could to be physically ready for this difficult journey towards recovery.

Emotionally, I remember feeling relief. I was relieved that it was over. That the anticipation was done.

But, physically-emotionally, I couldn’t look down. I couldn’t bear to look at my stitched chest. Couldn’t look at the drains coming out of my side. Couldn’t bear to look at the sight of my blackened chest. Now, one year later, and even just weeks post-surgery, I LOVE my chest. I love that I bear battle scars. I love that they are reminders of a strength I carry, a strength I possess, and a promise of life. I love my scars.

 

Those first few weeks

When I got married, the advice I got from all my new-bride friends was “At your wedding, be sure to eat. Eat the food you took so long to pick out. Eat the cake you taste-tested. Eat. Sit down, and eat.” After my mastectomy, I took the same advice. I slept. I rested. I let my body heal. I let people bring me prepared meals, and yes, I ate them. All. I stayed on top of my pain medication — I hate pain medication — and gave my body the rest it needed in order to recover. I made sure no one came to visit in those first few days because, frankly, I didn’t want to feel the pressure of having to get up, brush my teeth, and play hostess (after a week or so, people did come by to visit and I was ready for them!).

 

I also made sure I got online to support groups to re-read all of those post-surgical stuff that didn’t make sense to me when I was preparing for surgery. Now, I was spending my awake time just reading.

 

I did fine having the little ones around. My children were very patient, kind, and understanding of what was going on. There was still a lot of stress in the house — it was by no means an easy journey. I did find myself frustrated with daily things I used to do, and I stubbornly did things that I probably should not have (i.e. lugged a load of laundry to the basement; vacuumed the floor; washed dishes), but I needed to do them to keep my sanity. I just did them at a fraction of the speed.

 

For the first time in forever, I caught up on lots of television. Though I had books to read, I just wasn’t interested. It was actually hard to hold up a book, and it was even harder to sit up for any long periods of time. I developed  a drain infection, and the only thing I could do was to watch some mind numbing television. So, I did.

 

Those first few months

I had to learn to understand my body. Before the surgery, I was an active runner. Now, I couldn’t feel the upper half of my body. I had to learn what the “numb” sensation felt like. And, I had to learn to just be uncomfortable with it.

 

The look of it allLike I wrote before, it did take me some time to accept the dark scars on my chest. But, I did grow to love them. I’m proud of them. My chest did seem funny looking — a bit uneven and kind of lumpy and misshapen. Though people told me to be patient, I was anxious about how uneven my implants looked. And, sure enough, after about six months, they began to even out and look normal. I’m told that the swelling — real deep swelling — takes time to work itself out. Now, at one year later, I think they look totally natural!

 

The feel of it all. Let’s talk about the numbness for a moment. Until about 10 months post-surgery, I couldn’t feel a thing from just above my implants to just under it (so, the bra area). It felt so freaky weird to not have sensation. My body temperature around my breasts is always a little colder than the rest of my body. My implants, at first, felt really hard. Now, one year later, I think they move naturally, feel fine, and I even have sensation back around 50-60% of my chest (compared to 0%).

 

Today

Today, I feel really great. There are still some movement and strength issues, but overall I feel good. I made sure to go to physical therapy (a MUST MUST MUST – even if your doctor tells you that it’s not necessary — which is what my doctor told me!). I continued to strength train, run, and work out. Though, after helping to move a couch the other day, I can feel the tightness in my chest again — nothing some stretching can’t handle.

 

Is it all back to “normal”? No. It won’t ever be. I still know that I have implants in there — they pull and tug sometimes and they remind me that they there. But, overall, I don’t think about them.

 

What was “normal” anyway? I don’t think it’s “normal” to have lived my life worrying about breast cancer. Panicking at every lump, bump, and soreness in my breast. I worried about dying. I worried about chemo, radiation, and having to disrupt my life for cancer … again. I think “normal” is having a life, and not having to obsess about cancer. Though I’ll never be totally naive to it, this mastectomy lifted a weight off of my already busy mind.

 

One year later.  It was worth it. It’s hard to imagine what life will be like when you’re on the other side of considering a mastectomy. I’m here to tell you that it’ll likely be just fine. And, in my case, it’s even better.

 

Peace, love, and looking forward,

Liza


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2 Responses to ONE YEAR LATER: What it feels like

  1. Robin says:

    Liza, thank you again. My mastectomy (one side) was Friday, and thanks to you and your step-by-step candor, I have been able reach out and accept good care for myself. I came home Saturday, and have gratefully accepted the care of nurse friends who stop by each night to do the drain stuff, I have sent other visitors away, and I have watched an unfathomable amount of tv. And I take the pain seriously! You have made a tremendous difference for my family and me.

  2. Tina says:

    Liza, what a gift you are giving to those facing the same surgery, its recovery time and what comes with it. I’m sure that most doctors do a good job of telling women ‘what to expect,’ but to hear it straight, no sugar-coating, from someone who has been in the trenches must be incredibly empowering and comforting.

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