Monday, January 18, 2010

Lessons Learned From My Mastectomy


It has been exactly one month since my mastectomy, and I've learned a lot in the past four weeks. Originally, I thought my blog posts after surgery would be rather straightforward: this is what happened to me on this day, and this is what you can expect on that day when you are recovering. But I realized quickly that my recovery is so very different from anyone else's, and that everyone heals at her own pace, that it wouldn't be very helpful to simply chronicle day-by-day changes. Plus, this blog hasn't been a forum for diarying as much as it's been a place for me to contemplate the bigger existential issues -- the "what does it all mean?" aspects -- of life as a previvor, and my posts here have been more like essays or ruminations on subjects than anything else. So I can't offer you a play-by-play of what to expect in the first month after your mastectomy, nor do I want to tell you every little detail about what happened during mine (mostly because it would be SO boring. Day 9: Slept. Day 12: Slept. Day 16: Slept). But I do think I have learned some things worth passing along, and so I proffer this instead. Behold: Five Things I Learned From My Mastectomy.


5) A mastectomy removes only your breasts; it does not change you in any other way.

This may seem like an obvious one, but bear with me. Before surgery, the mastectomy seemed like such a game-changing event, such a cataclysmic tear in the very fiber of my existence, that I imagined I'd wake up (if indeed I did -- remember, I was pretty convinced I was going to expire on the table) a completely different person. I also imagined that life after mastectomy would be very different. And to some extent, it has. But I also made the mistake of thinking that things would magically be better. This is a common mistake. Women do it a lot, especially when we want to lost weight. For example, say you want to lose ten pounds. When you imagine yourself at your goal weight, you aren't just you: you are not only thinner but happier, you always have good hair days, the lights always are green for you, and your partner always emptys the dishwasher. It's a Disney-fied version of your life, where the bluebirds alight on shoulder and the deer in the meadow pause by the brook to let you pet them. This fantasy occurs when we conflate the idea of happiness in one area with happiness in unrelated areas. And I fell into this trap before my mastectomy. I imagined that on the other side of surgery, life would be better: sunrises would be more brilliant, I would be thinner, people who are jerks would no longer be jerks, and my partner would always empty the dishwasher. Guess what? I haven't seen a sunrise (remember: all I've been doing for a month is sleeping), but I haven't lost (or gained) a pound, jerks are still jerks, and I just emptied the dishwasher all by myself. Which is fine. Because a mastectomy has nothing to do with the dishes. That's why I say a mastectomy does exactly what it's supposed to do; nothing less and nothing more. I recently saw a friend for the first time since my surgery and after we'd been chatting for a few minutes she look at me stunned and said, "Geez, you are exactly the same." And I understood the impulse. In fact, I remember thinking the same thing about this very friend after she'd had her daughter a few years back. Mastectomies don't change who you are any more than having a baby does, but they are such monumental, life-changing events you can't help but marvel that you come out the same person you went in. And what a relief! I know my friend meant what she said as a compliment, and I took it as such: she was happy to see that after everything I'd been through, I was still her old friend Steph. Just with new boobs. Which is exactly the only thing that has changed. As it should be.

4) Getting your teeth whitened hurts more than having your breasts removed.

I've allowed myself a few indulgences to celebrate my recovery from surgery. I've gone shopping and I've gotten an edgy new haircut (with bangs! The last time I had bangs, I hadn't even developed boobs!). But to really treat myself, I decided to get my teeth professionally whitened (remember: mastectomies do not whiten teeth, even if in your post-surgery fantasies your smile is suddenly sparklier). Big mistake. I expected discomfort the procedure (the dentist uses a tool called a "cheek separator" -- I'll leave it to your imagination what it does and how it feels) but I had no idea I would be in howling pain for hours afterward. My teeth, I've since learned, are particularly sensitive to whitening agents. My mouth hurt so much, I asked my husband several times to punch me in the face, because I was sure a broken jaw would both hurt less and distract me from my pain. It hurt to talk. It hurt to breathe (the air on my teeth triggered shooting pains). And the ironic thing was, it hurt SO much more than my mastectomy. The gift I gave myself to celebrate recovering from major surgery hurt more than the major surgery. The lesson is this: mastectomies are really no big deal. But think twice before you get your teeth bleached.

3) The worst part of surgery is the fear and anxiety I felt leading up to it.

It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.

2) You get used to it.

The first time I saw my new breasts, I thought to myself, I'll never get used to seeing my nipple there (it is a lot closer to my face than it used to be). But guess what? I've gotten used to it. I thought, man, I'll probably never feel comfortable with the fact that I had a mastectomy. Guess what? I barely ever think about it. I thought that I'd never love my body again. But I already do. Yes, things are different. But I can accept that. I feared I would hate those changes. But instead I embrace them. After all, I chose to change. And I'm glad I did. Life under the threat of cancer was stifling. Now I'm free. I'm still getting used to that.

1) Life goes on.

Tomorrow is my first day back at work since my surgery. Physically, I feel fine. But I'm worried about faceplanting on my keyboard at about 2 p.m. After all, I've been pretty sedentary these last few weeks and my energy levels are still pretty low. But whether or not I'm discovered tomorrow afternoon curled up under my desk with a book under my head and my thumb in my mouth, it's time to get back to the real world. I had a dream recently that I went back to work and everyone was just sort of like, meh, whatever, there's a bunch of stuff you need to sign off on on your desk. And I was crushed. Where was the fanfare? Where were the hugs? But at the same time, I understood that this was OK, too. Because life isn't all about me and my breasts. Life goes on. And now my life can go on, too. But if my work friend do hug me, I hope they are gentle.


All of this is to say, simply, that there is life after surgery. It's mostly the same life you had before surgery. It's not that much better, but it's definitely no worse. There are much worse pains than the pain of surgery, and resilience and adaptation are partners in healing. But most of all, surgery changes only what it's supposed to: my mastectomy took away my breasts, my cancer-risk, and my anxiety and fear, but it didn't take away my personality, my sense of humor, my optimism, or my joie de vivre. And that, to me, is a very good outcome.

27 comments:

  1. Thanks for the insight. Sounds exactly like what my social worker has been trying to tell me.

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  2. I love this. I recently had a mastectomy and I would like to print number 5 out and put in on my refrigerator, and mail it to all my friends and keep it in the car with me. Hand it out to everyone who asks me how I am feeling "emotionally" Thanks so much for sharing.
    If I had any of the accounts listed below, I would post as someone other then "anonymous".
    Carolyn

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  3. Another great post. In other words...life goes on.. and that's the point of doing what we're doing, right? I'm really glad to hear it too. BTW, thanks for the awesome thank you card, that was very sweet of you!

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  4. Dear Steph,
    As usual, this is so well said and so right on! Big, gentle hugs to you. Oh, and thanks for the teeth whitening warning! Love you and miss you. Come visit me in the sunshine! We can test out the new boobs on a topless beach! I bet no one will be looking at your shiny white teeth!

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  5. Great advice! It's important to remember that who we are as women isn't tied to outer appearance. Thanks for sharing!

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  6. Hi Patty... having my breast removed 6 yrs ago and the battle was long and horrible.
    It changed my life in many ways.
    I came out of this bitter and angry, and scared and why me, I was a stunning women, who lost it all...
    I lost my friends and my partner of 16 yrs.
    I don't know the person that was left after the battle, so I'm sorry it's not about loosing your Breasts and being the same, as you are NOT the same, and never will be.
    To battle the demon Cancer...your life has changed forever!

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    1. I agree, it DOES change you, for better or worse. But how could you not be changed from such a huge body altering event?? I find it hard to contemplate she has not changed. I suppose it's all about how you handle it mentally. Dr. Phil said something that helped me some, (I heard this before my surgery), "You are not defined by the tissue you carry around."

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    2. I agree with anonymous ,it does change you and like her I am going through a long hard battle , its been 9 months since I had my right mastectomy , and I still have a whole in my chest ,its been so slow in healing and I cant exercise incase it rips open again , my chest is tight .I am glad there are people out there who seem to get back to normal .And I wish I could too , I don't go out socially , I have put weight on ,I cant exercise at the gym ,my life has changed and is still changing . Thank goodness for my 4 toy poodles

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  7. I will be traveling this path toward end of July and I have done so little except cry and feel sorry for myself. After reading this, I felt better. I just hop the good feeling lasts. I have my ups and downs. If anyone can say anything to make my anxiety feel at ease, please let me hear it. It feels good to read positive remarks and it certainly feels good to know that there is life after mastectomy. Thank you for sharing...

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  8. Hi well i think that lose the breast for a girl have to be quite hard but there still implants in the good side but still a very traumatic process and i just want to say just like the shirt you lose you're boobs not you're sense of humour

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  9. My Easley SC dentist uses special scraper to lessen the mild pains of teeth cleaning. It is more of a clay-ish rubber pallet operated by electricity. Though I haven't had any scary stories to share about dental visitation, I can tell that it lessens the grind this machine creates on my mouth. Talking about my dentist, Easley SC has a reputation of having innovative doctors and dentists trying out new technology for their craft.

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  10. Thanks I am waiting for surgery next week and am having the worst anxiety attacks for the first time ever. Worried won't wake up, worried about unbearable pain and blood.
    Thanks for your blog makes me feel better knowing that you have come out the other side
    Lin

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  11. thanks so much...im a bit less nervous about my upcoming mastectomy. and actually look forward to my nipples being where they used to be!!! :)

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  12. Having not really spoken to anyone going through the same as me (feeling like climbing inside myself and not coming out for about a year)! I stumbled upon your blog....Thank you. I'm due to have a mastectomy tomorrow, my heads all over the place, i'm normally a positive happy-go-lucky young Mum of three small children and it feels like i'm living in a bubble! Who is this person walking round in a daze - oh it's me!!!! It's so good to feel reassured that when this is all over, I will be me again, wife, mummy, daughter and friend - just a little lopsided! Thank you. xxxxx

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  13. I'm gettting a single mastectomy next week but I notice I'm getting very very angry at my family a lot. Whatta you think? Is it common?

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  14. OMG I wish I had found this before my simple nipple saving unilateral mastectomy 4 days ago! YOUR words would have been such a comfort to me. You are so right... nothing is worse than what I put myself thru before surgery! I was anxious and scared to the point where I thought I was going crazy. I had my surgery 4 days ago and I was in the hospital for 3 days (complications from anethesia). I am home now and feel SO much better. I am a little sore but have pain meds. Most of all I don't feel anxious or scared like I did. I honestly thought I was going to drop of a heart attack - never mind the d*mn breast cancer! lol That was such a scary place to be... I even named it "The BAD Place". Anyone out there now that is awaiting surgery and is scared and anxious - PLEASE try to relax! IT will be okay! Really, the mental anguish you are going thru before surgery is truly the worst part. And don't forget I am only 4 days from surgery and I am saying this! BTW - I can't drive but I am gardening, walking around, doing laundry, cleaning the house, showering..... I am actually upset that my Dr.s won't allow me to do more! I am very active and very fit which I think also helps a LOT.

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  15. Thank you for this. You really have a very good sense of humor. I have a friend who just had a mastectomy and I would like to share your blog so she'll at least have a chuckle.

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  16. this is exactly what I needed to hear. thank you!!

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  17. Love this, thank you for sharing! I'm 37 and having a unilateral mastectomy this Thursday. I've been calm and optimistic through this process, but am trying to be mentally prepared for the anxiety I'll feel leading up to the surgery. It's reassuring to know this may in fact be the hardest part, mentally, of the process. I'm looking forward to being on the other side of it soon! -Lisa

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  18. Hi This is by far the best advice that I have come across so far! Thanks for sharing your experience in such a positive bright way! My surgery is in 30 days for Stage Zero DCIS with Multi Focal (Widespread pre-cancer cells). You have given me such relief that it will be Okay. It does not have to be better or worse post life altering surgery but just Okay and that's Okay!

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  19. Hi This is by far the best advice that I have come across so far! Thanks for sharing your experience in such a positive bright way! My surgery is in 30 days for Stage Zero DCIS with Multi Focal (Widespread pre-cancer cells). You have given me such relief that it will be Okay. It does not have to be better or worse post life altering surgery but just Okay and that's Okay!

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  20. Thank you for your story. I have a double mastectomy scheduled in 3 days and I'm severely anxious and scared of the procedure. I've basically been an emotional train wreck since they said I had breast cancer. I cant wait for this to be over. Thank you for sharing your positivity.....

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  21. Your story is inspiring to many but not really the normal. Bilateral Mastectomy is painful, lymph node removal is painful. And no one talks about PMPS (Post Mastectomy Pain Syndrome) which is real for over 30% of Mastectomy patients. Stage IIb both breasts with lymph node involvement. Yes it gets easier but this doesn't happen overnight.

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  22. I wish we all felt that way. Funny thing is, while I was slightly nervous about a major surgery, I was having immediate reconstruction....great right? Well, not exactly....I lost both implants 10days post op. Now I have these big craters in my chest with ribs poking out. While we may not be defined by the tissue we carry around, I found it to be a good solid kick to my feelings as a woman. While I never gave my boobs a lot of thought before, I sure do now that I do not have ANY.

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