So it took me a little while to get past the fact that I hate all the options: frankly, they all suck. But since I have to (as Pete says) ‘choose life’ I have to pick one. And the doctors really weren’t much help. Well, at first it seemed pretty clear: mastectomy would be the best choice. Least chance for it to return, possibility of no radiation or chemo, best chance for a somewhat normal looking breast. Longer surgery and recovery process, more painful – but I can deal with that.
So last Tuesday, as we made our rounds, by the time we got to the reconstructive plastic surgeon, I was pretty convinced it was the right move. We waited over two hours to see him and then got about 10 minutes of his time (after the video), in which he threw me a curve ball: basically said that he could never make a breast as good as a real breast and that if it was him he’d do everything he could to save his real one and to try the lumpectomy first. What?!?!
I don’t know about you, but I wanted a really confident – cocky even – plastic surgeon who would tell me how beautiful I would be when this was all over and that I wouldn’t miss it at all. Ha! Not even close. So it pissed me off and I just wanted to forget the whole thing. Then I remembered that is not one of the options. Which pissed me off even more.
So I calmed down a bit on Wednesday, and on Thursday called my breast surgeon asking for a referral to a different reconstructive plastic surgeon. She was shocked. “But Dr. H is the best! We’ve never gotten one complaint about him and he’s the very best at breast reconstruction.” She assured me that she’d get another referral for me, but also asked if she could talk to Dr. H’s admin about it, as she was sure he’d want to talk to me again. I agreed, conceding everyone has a bad day.
Long story short, he called and we spoke for about 45 minutes. He was genuinely sorry we got off on the wrong foot, but he also wanted to be clear that he cannot perform miracles and only God can make a real breast. This will not be the same and I shouldn’t expect it to be. I probably won’t have any feeling in it. And while he will do a lift on the other side (should I be lucky and not have the gene and have to do a double), they won’t look the same. Yes, this sucks, but it’s also better than having one that is much smaller than the other from the radiation and also has a huge chunk taken out of it – nothing normal about that either!
I realize I’m being vain. That I shouldn’t worry about how it will look and only be concerned with my health. I’m sorry but I can’t help it – I plan to live and thrive after this and I want to be happy with myself too, and hopefully be able to stand looking at myself. I guess we’ll have to see about that part.
Anyway, after our talk I agreed to see him again – and that appointment was today. Tara joined me this time. He was very similar to before – all business and straight to the point, but I got it this time. We talked through the procedure, which will be the tissue expander option. Basically after the breast surgeon removes my breast, he’ll start to put me back together, inserting the tissue expander (like a balloon). Then over a couple of months I’ll go in periodically for saline injections. Once the skin has stretched enough, I’ll have another surgery to put the implant in. And then a few months later will be nipple reconstruction. And the lift on the other side so they somewhat match. Yes, a long road – let’s hope the lymph nodes are clean so we don’t have to add chemo or radiation!
So I am now scheduled for a double mastectomy on April 30. We scheduled for worst case scenario because it’s easier to take the time off and just do one if the gene test comes back negative than it would be to add the time. It’s so late in the month because I asked what was the latest I could safely push it off to because I need some time to get my head around it all, and to get things in order at home and work (although everyone is so supportive and has assured me all will be fine and not to worry about it).
I feel better this way. I have time, I can get things in order, I have a plan and know, for the most part, what’s going to happen. I know, I know, the best laid plans… but you can’t blame a girl for trying, right?
I know this is kind of a weird response, but I also know you’ll get it…I am SO glad my ovaries and uterus were hidden and I didn’t have to make these choices! If I had planned on having more kids, it would have been more traumatic, but my trade-off for losing some of my girlie parts was no periods and fewer migraines. OK, so also hot flashes and the occasional ghost period pain, but overall not a bad deal. So, while I can’t relate on this point, I think any woman can understand at least a little what these choices must be like. And no, like Jackie said, you’re not vain at all. Just intelligent and thoughtful. You can never be 100% sure you’re going down the right road, but as long as it leads to recovery, then it actually is the right road!
Yes, I do totally get it, Sue, and also know you’re right: any road is the right one so long as I get to continue my journey here with all of you! I still am not completely sure what I’m going to do or if more will need to be done, but I will make my choice and not look back.
My Amy,
Though not in your situation and I certainly don’t pretend to know how you truly are feeling; scared, anxious, determined, etc…., I was hoping you would choose this option if you test positive for the gene. Our breasts, while we all appreciate and enjoy them, truly are not nearly as important as our lives and our futures with our loved ones. …and they certainly don’t define us as women either. Never choose vanity over a sense of well-being of having the best odds. Next time I see you it will be my shopping treat for the sexiest/funnest bras we can find!! 🙂 Hugs and hurricanes!!! 🙂
Oh Shannon, I miss you! Thank you for the reinforcement and reminder – and I very much look forward to our shopping trip! 🙂 xoxo
“I realize I’m being vain. That I shouldn’t worry about how it will look and only be concerned with my health. I’m sorry but I can’t help it – I plan to live and thrive after this and I want to be happy with myself too, and hopefully be able to stand looking at myself.”
My dearest, you are not in the least bit being vain…and BRAVO for not accepting that kind of behavior from the doctor. It’s completely inexcusable and I’m glad you let him know that and that he apologized to you. Would he treat his wife/daughter/mother that way? I continue to be awed by your strength and determination. Love and vibes, Jackie
Thanks J – I learned a lot of that from you, my dear! Can’t wait to see you at Deb’s! xo
Hello lovely Amy. Interesting that Dr H could be so blaise about your consultation – there might be some comfort in there too…that he clearly sees this as a very every day thing for him which also suggests high success rate and nothing that he sees as a problem – albeit perhaps a cosmetic one. I’m glad you gave feedback about him. He needed reminding of how this is feeling for you. I wonder how he would feel if you told him his penis might not look how God had made it!! Anyway..sounds like you have a plan!! All power to you girl!! xx Ger
Thank you Geraldine! You’re right – I now do see it as a comfort and will just trust he knows what he’s doing. He is one of the best. Hope you’re holding down the fort in the UK! xo