Transition …

I’ve been in a weird head space lately. I was warned by my cancer counselor that this “limbo” feeling was coming as I transition from patient to survivor. I just didn’t expect it to feel so weird.

My days are pretty simple. Get up. Go to water aerobics. Visit the tattoo shop and talk to Gerry about any errands he needs me to run. Come home. Get dressed. Walk the dog. Run errands. Make dinner. Rinse. Repeat. I like the simplicity of it all … but as I get farther away from my cancer treatment I am starting to feel pressure to reconstruct.

Everyone asks me when I’m going to reconstruct – like it’s the obvious next step after you have a breast removed. Like “why wouldn’t you want to reconstruct? Don’t you want to be whole again?

Well … truth is I’ve been thinking about deconstructing instead.

We went and talked to a plastic surgeon. It was our 2nd time going to talk about our options. The first time was right before my mastectomy. I was hoping I could find a way for the surgeon to save my breast – but when we realized that the tumor was as big as an avocado pit it was obvious to me that we needed to do a full mastectomy.

At the time I asked the surgeon if we should do both. I had a gut feeling that I wouldn’t like being asymmetrical but he talked me out of it. He suggested that it was too big of a decision to make and because I was already going to lose one breast that I should get used to it before I decide. Get through my chemo. Get through my radiation and then recover before I made any rash decisions.

I understand and appreciate what he was saying to me … but I wish I had listened to my gut because I find having one breast very uncomfortable.

The plastic surgeon looked at my remaining breast and asked me if I had had any work done to it. I said “Why? Because it’s so fabulous?” She agreed. She told me it was a beautiful breast and what a shame I had to lose the right one.

It’s true. My breasts (now breast) are beautiful. It’s probably the only thing on my body that I love. Isn’t it weird that I had to cut one off? Maybe the universe wants me to love the WHOLE PACKAGE!!

Anyway – the surgeon looked at my “area” and pulled on my love-handles and on my Buddha belly and told me I had a few options:

First important bit of information you need to understand:
Because I have had radiation – my “area” is forever compromised. It doesn’t matter if I wait a year or 10 years. It is FOREVER compromised. That means it won’t heal like the rest of my body would from surgery. So because of that she can’t just pop a breast implant in there and send me on my way.

First choice is: Latissimus dorsi flap

151096-3The latissimus dorsi flap moves muscle and skin from your upper back when extra tissue is needed.

The flap is made up of skin, fat, muscle, and blood vessels. It’s tunneled under the skin to the front of the chest.

This creates a pocket for an implant, which can be used for added fullness to the reconstructed breast. Though it’s not common, some women may have weakness in their back, shoulder, or arm after this surgery. The surgeon stated that it could effect my swimming/exercise and would require multiple surgeries. NO THANK YOU! Next.

151096-1My second choice is a: TRAM (transverse rectus abdominis muscle) flap.

The TRAM flap procedure uses tissue and muscle from the tummy (the lower abdominal wall). The tissue from this area alone is often enough to shape the breast, so that an implant may not be needed. The skin, fat, blood vessels, and at least one abdominal muscle are moved from the belly (abdomen) to the chest.

The TRAM flap can decrease the strength in your belly. The procedure also results in a tightening of the lower belly, or a “tummy tuck.” All the surgeons I have met have looked at me and smiled when they describe this procedure as a tummy tuck!! Who doesn’t want that??

The answer? ME!

It’s a 7-8 hour surgery with a 6-8 week recovery time. I asked my surgeon what the pain was like from this surgery and she said it was VERY different from the mastectomy pain I had. There was almost no pain when I had my breast removed but she said that recovering from 2x different surgeries on the same day can be quite painful – especially when recovering from abdominal incisions.

So besides the pain/suffering and recovery time – I have also seen in person a number of these surgeries and they all look ummmm… OK. I am happy for the women who are happy with their surgery but the majority of the women who I’ve met who have had this surgery are just “ok” with it.

None of them are over the moon about it and when I look at them – I just see an asymmetrical chest. These constructed breasts never looks like the other breast. I think it would drive me insane.

Third choice: Do nothing. Wearing a prosthetic.
Wearing a prosthetic makes my chest feel like it’s bruised (more on that later) so I can’t imagine putting something permanent under my skin that I can’t take off when I need a break.

So what are my choices if I decide not to do reconstruction. I can wear a prosthetic. I have tried all kinds of prosthetics. The first one I purchased was almost $500 and sticks to my chest wall. It fills my bra and once it’s under clothing it looks just like a real breast.

But my “area” is still so sensitive that I can only wear it for about 30 minutes before it makes my chest-wall ache. You know that rotten feeling when you press on a bruise? That’s what it feels like. So that expensive experiment went back into the box almost immediately. Worst money ever spent. Anyone need a C-cup prosthetic? I can give you a good deal on it. 🙂

I also purchased a $125 prosthetic silicone form that is lighter. It works pretty well but again the weight of it is uncomfortable against my chest.

I have now switched to a Handful Sports bra (love this bra) and a $13 foam insert. So far it works the best for me … and I have been trying to just get used to being a “uni-boob” but even a year and a half later since my mastectomy I am still uncomfortable in my body.

I don’t have one single day when I’m not thinking/feeling/stressing about wearing a prosthetic. Is it in the right spot. Is it high enough. Low enough. Full enough. UGH!

Fourth choice: Do nothing. Wear nothing.
I tried for a few months to just be a uni-boob. It doesn’t work. It’s just as uncomfortable for me as wearing a prosthetic.

So I started exploring “deconstruction”. I’ve brought it up with every doctor/nurse who asks me when I’m going to reconstruct. Almost all of them look at me like I’m crazy when I tell them I want to go flat. I feel like if I removed my other breast that it would be so much easier for me to move forward with my life.

I joined a group on FB called Flat & Fabulous. It’s women from all over the world who have had mastectomies talking about their experiences. A lot of them tried to do reconstruction and had issues because of their radiated tissue. Either they had complications from the surgery, difficulty healing their “area” and had to have multiple surgeries to fix or remove more tissue. Many of them have chosen to go flat and are finding ways to be empowered in their new bodies.

It’s been great to have a group like this to read about others experiences. It makes me feel less weird about wanting to deconstruct.

screen-capture-2Breasts are like earrings. They come in pairs. For me – having one breast is like wearing one earring. It doesn’t work. Only Prince can get away with wearing one earring.  🙂

Breasts come in two and for me the “having breasts” part of my life is over. It’s done. But my life isn’t over.

I want to move forward and be comfortable in my body.

My mastectomy wasn’t easy – but it also wasn’t as bad as I thought it was going to be. Recovery was quick. I was up and out of bed walking around. I barely had any pain. When I think about having the other side done – it feels like the best choice for me.

I keep having daydreams about getting dressed in the morning. I throw on a tank-top and walk out the door. Easy breezy and rocking a flat chest. I know I can rock it. 🙂

I was talking to a friend about my choices and she said “But if you remove your breast – what if you regret it?” I don’t think she gets it. I am already missing a breast. Missing my other one is not that big of a stretch. And if I don’t like being flat – I can wear my $13 dollar prosthetic for both. I kind of feel like wearing 2x foam inserts would easier than one because they’d be the same.

Anyhoo… I’m still mulling things over. My therapist wants me to wait a year before I decide to do it. She suggested that having “procedures” seems normal to me. I’ve just spent the last 2 years having daily/weekly procedures done. But having major surgery isn’t “normal” and so she wants me to wait a little longer so I can really think about it.

Truth is I’ve been thinking about deconstructing my chest since I woke up from my mastectomy surgery…

One thing I have realized from all my cancer treatment is that I just want my life to be easy and comfortable. If it’s too much work or it makes me feel uncomfortable – I don’t want it in my life and this left-over breast of mine is getting in my way!

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15 Responses to Transition …

  1. Stephanie says:

    It’s funny, when I first read reconstructing, I thought people were referring to a new store or entrepreneurial adventure, maybe a new book…then it hit me. Of course- your body.
    I lived with my housemate for 3 years as she went through a mastecomy and TRAM rebuild. It was immense. Nine months of nurses and in home viits, changing dressings, drainage tubes…and every one is different, of course. I would love to talk more about it with you if you’re ever inclined.
    I completely understand the desire for symetry, for balance, for being IN your own making, physically. Whatever you decide, I wish you nothing but ease and success in the next part of the journey. As a woman with small boobs who appears completely flat when ever I wear anything with compression, ie sport bra tops- I get it 😉 On one hand, it’s super easy to deal with. Yes, I battle with my own issues around feeling more feminine and desirable in a breasty, curvy, voluptuos varga girl way but man, our bodies are ours. We’ve grown up in them, all the scars and surgeries and tattoos and recoveries. Maps of our lives.
    I’m thinking and typing out loud here but as always you resonate with me. Lots of love and sending you increidble joy and laughter. Cause who the hell couldn’t use that, right?!? -stephanie

    • Sarah says:

      Hi Stephanie!!
      I had a friend say to me “But if you remove your breast – what if you regret it?” … I don’t think she gets it … I am already missing a breast. Missing my other one is not that big of a stretch. And if I can wear a prosthetic for one – I can wear a prosthetic for both. I kind of feel like that would be easier because they’d be the same. Ugh. Big love to your friend who had surgery. That sounds like the experience of most of the woman I know and it’s not something I am interested in doing.

      Thanks for writing.

  2. Sarah says:

    from the readers perspective, it feels like you’ve made your choice. Live the life you want to live, move forward with no regrets. When I see any women walking down the street I look at her face and hair, then I check out her shoes, then her outfit. As a woman, I never notice another woman’s breasts. Men…well…it seems you have an amazing hubby who wouldn’t care if you decided to have zero boobs or ten as long as you are happy.

  3. Jane Roth says:

    I had a lump in one breast about a year and a half ago. I opted for a double mastectomy and no reconstruction. I did not have radiation or chemo, so I cannot speak to that (the surgeon described the tumor as “very contained”, and he was able to get it all).

    I also discussed reconstruction with a plastic surgeon, and I found the description of the process, the number of procedures and the recovery time very distressing. During the visit, I had to ask him to put the implants out of my sight, since I found them very upsetting. He was surprised, but did finally put them away.

    But your topic was feelings. Women feel very differently about their breasts and their appearances in general, as I have found from my occasional attendance at Pink Ribbon Group sponsored by the clinic where I was treated. I found that feelings range from ” I am different/bald/deformed and this is the worst thing that could ever have happened to me” to “Who the hell cares? I am as me as I ever was.”

    I am at the “who the hell cares” end of the spectrum.

    I find the absence of breasts very freeing. I have no more bra pain, no more shoulder pain, much less elbow and wrist pain. I suffered with these problems for many, many years and am so relieved not to have them any more.

    The only thing I am considering now is some relatively minor surgery for tidying up. As my oncologist explained, people heal differently and there is no predicting what will happen in a particular case. I have some extra tissue on the sides I could happily do without. Maybe liposuction would work? We shall see.

    I am absolutely convinced that each person faced with any amputation must decide for him/herself just what degree of reconstruction or prosthesis they want for themselves, and that there is no one right answer.

    One thing I can tell you is that I have not been able to find a swimsuit, even a post-mastectomy swimsuit that does not proceed from the assumption that all women desire a busty appearance. And that has been my worst problem stemming from my decision.

    • Sarah says:

      Thank you for sharing Jane!! You’re my hero. 🙂

      I went to Swimco and found a few suits that I could wear without my breast form. I have a Speedo and a TYR Athletic suit that I use for water aerobics. It has sew in cups but they lay perfectly flat against my chest wall. You could definitely wear one of those. They also have lots of lay-around the poolside looking fabulous suits and I found more than 5 that I could wear that didn’t require me wearing my prosthetic. I told them I had one breast – and they bent over backwards to find me the perfect suit. I am a life-long customer now. 🙂

  4. Jens says:

    Hey Sarah,

    From a male perspective… I loved my hair when I still had it. There are nen that spent a lot of time, pain and money on being “complete” again. When they are not models or actors everybody looks funny at them. Going without any hair is very easy for me and saving me a lot of trouble. Maybe time for hair is just over for me. This might not help you with your decision a lot, but it might help you discussing with 60% of male friends doubting your decision if you go for deconstruction.

  5. Dory says:

    Hi Sarah. I am coming up on the one year anniversary of my bi-lateral mastectomy and decision to not have reconstruction. My cancer was only in my left breast, but after many meetings with my surgeon, my cancer counselor and a plastic surgeon, I decided I would be more comfortable being flat and even. I also was only eligible for implants, which held no appeal for me. Having been small breasted to begin with, when dressed I really don’t feel any different. Also, there are a number of women on my mother’s side of my family that have had breast cancer, so making the chances of dealing with recurring breast cancer as minimal as possible, seemed the smartest choice. For me it was the correct route to go and I have had no regrets. This is what was right for me. You are an amazing, strong and intelligent woman. Trust your feelings, deep down you know what is right for you.

  6. Laura says:

    Best to you in this next leg of your journey wherever it takes you. Not that anyone’s opinion other than your own matters in this regard, but I fully understand where you are coming from on this one. I have always wondered how women manage with one breast and thought if I ever had to decide between one breast and no breasts, I’d go for none. It’s obviously an intesnely personal decision; but, I think, on a core level, we really do know our own minds and bodies and what will work best for them if we just listen. I had a similar situation when doctors told me to keep a uterus I didn’t want, wasn’t going to use, and was causing me no end of issues. I kept it for almost 10 years before the constant struggle and pain made doctors agree with me that it just needed to go. It’s not the decision for everyone, but it was the decision for me and my life is better for having made it. And you will most defintely rock whatever you choose!!

  7. Shannon says:

    What a great post. I can’t even begin to imagine the decision you have to make but ultimately the best decision is the one that makes Sarah happiest. Breasts are breasts. They don’t define you.

    Thanks for always begin so open and sharing.

  8. Hi Sarah. I came across your blog by way of another link on a recent Vegan Essentials email ad and I’m a little embarrassed to say the last time I’d heard of you was an interview with you on the Vegan Freaks podcast I think around 2005! Just for the purpose of perspective, I am an Abolitionist vegan. I advocate unequivocal grassroots vegan education because I believe animal welfare and “single issue campaigns” have the ultimate effect of encouraging continued overall animal exploitation.

    Obviously a lot happens in ten years and needless to say I was shocked and sorry to read of your ordeal but very happy to find you coming through it so relatively fortunate. I have a long time friend in Nanaimo who has endured *3* brain tumour surgeries in the past 3 years and to be honest I’ve found his constant optimism flabbergasting and inspirational at the same time, especially since his initial diagnosis was on the heels of the loss of his Mother, whom he loved dearly and had been nursing for the previous 7 years or so.

    Anyway, in response to your post I wanted to say, of course, being a man, I cannot fully empathize with how I might feel in your position, but based on the options as you describe them, if it were me I would not want to pursue reconstruction. I can’t help but feel there is a patriarchal component here in the process rearing its ugly head. I think, if I were a woman, I’d prefer the fabulously flat approach for symmetry as you say and also for less work/risk. And if I were that woman’s partner, male or female, it wouldn’t make a particle of difference to my feelings for her no matter what she decided.

    Good luck going forward.

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