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Posts Tagged ‘decisions’

Make mine a double

Posted in Cancer, Decisions, tagged , , , , , on April 18, 2012| 10 Comments »

Why do we never take our own advice? Someone close to me recently had to make a life-changing decision – nothing would ever be the same either way. She was really torn. Like this, there was no good decision – the options both sucked in their own way. It seemed so simple to me: either try the 10-10-10 method from Suzy Welch (thanks to Kristen for buying me that book!) , where you consider how you will feel about a decision in 10 minutes, 10 months and 10 years (or similar), or simply pick a choice, convince yourself you’ve made the decision and live with it for a few days and see how it makes you feel. She listened to me, did some considering in her own way, and then made her decision and stuck to it.

So here I am with this major decision, trying to figure it out, and did I even remember what I told my friend just days ago? Of course not! Not until I ended up doing one by accident. And it did work, because it clearly showed me where my heart was. Here’s what happened…

Today was pre-op. I went to work in the morning and then to the hospital for meeting after meeting after meeting.I still wasn’t sure if I was going with the single or the double. I hate being indeceisive, but just wasn’t sure. I wanted clarification on the money part, though, before finalizing anything, so I called my health insurance. I was told that they would only pay for the left breast if it was deemed ‘medically necessary’ – so if it also had cancer. Well, there you go. I do not have thousands of dollars to do the other side. So it will just be one. The decision was made for me. And… my heart sank. But I knew there was no debating with her, so I said thank you, took the reference number and hung up. I’d have to accept that.

Fast forward to the hospital. I filled Mom and Mark in while waiting for the first appointment. We went in and spoke to the woman about the surgical consent. And there on the first line: bilateral mastectomy. I explained to her what the health insurance had said, she said she would need to get a new form, and called my surgeon’s office. Since she wouldn’t be able to talk to them for a few hours, we were sent on to my other appointments and told she’d catch up to us with the right form later in the afternoon.

So as we went to the different meetings, I digested the fact that it would be a single. And that I’d have to keep coming back here and continually checking the other breast. And going through all the tests. And then the worry any time anything unusual showed up. And the possibility of having to do it all over again. And (sorry – vanity) that I wouldn’t match. It just sucked, and felt like this is only the beginning – now it’s really never going to end.

At the last appointment (anesthesiologist), we met back up with the original (surgical consent) person, as well as talked to my surgeon’s assistant. Their news: my health insurance cannot deny me. It’s part of the Women’s Health and Cancer Rights Act – they have to pay for all related to the other breast, too, to make it symmetrical. To mom and Mark’s surprise, I immediately smiled, said yes, I want the double and signed the consent form. Living with the thought of only having a single, even for those few hours, showed me my true feelings. We all discussed it a bit, I explained, and the anesthesiologist said more and more younger women are electing this, so they don’t have to live with the constant fear of reoccurrence. And the younger we are, the longer we have to live (we hope) and so the more chance we have of it showing up again. No thank you, I want to be done, at least as much as possible.

Another bonus to my decision? I just learned I won’t have to take the Tamoxifen for five years, so there won’t be that concern if I’m ever again in a place where I want to have another child (don’t worry Nick, I’m not there yet!). But it is nice to have some positive options in my future…

Oh – and something that surprised me: tonight at dinner Nick said he knew that was what I was going to do. He turned to Alivia and she confirmed that he said that a week ago. He said that he knew I, like he, would want to do everything I could to just be done with it. And he was right. Like mother, like son. Next time maybe I should ask him what I should do? Hmmm… will really have to think about that one!

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The results are in…

Posted in Cancer, Decisions, Uncategorized, tagged , , , , on April 17, 2012| 13 Comments »

I should be happy. I should be elated. I should feel better. I got the results of the BRCA genetic test today and it’s negative – no mutations were detected. So I won’t be passing it on to my future granddaughter or nieces, which is the one part I AM overjoyed and infinitely thankful for. And of course I’m glad there’s not the likelihood of ovarian cancer, so I can keep my ovaries. So why am I not jumping for joy?

Because it means I have another damn decision to make. If the genetic test was positive, it would’ve been a double, plain and simple. The decision would be made. And early on I thought it was clear that if it was negative it would be a single. But then I went and spoke to people and read a ton, both discussion boards and other research, and so many people (including doctors and those who’ve been through it) recommend doing both anyway.

Their reasoning? Those who do just one have to be tested every six months. And they go through the worry all over again each time. And put their loved ones through it all over again. And then when there is something detected, it’s more biopsies and pain and stress. And God forbid it does appear in the other breast – it’s everything you’ve just been through repeated. This is not fun and not something I want to do again. And there are the cosmetic reasons too: doing both at once is easier to match and feel better about yourself in that way.

Why do some only do one? Less invasive – avoiding doing a possibly unnecessary surgery. Less pain and recovery time. To keep one natural breast, so you retain the feeling and the opportunity to breast feed if a baby is in your future.

So I don’t know. I’m so sick of options when there isn’t a clear one and none are good. Again, I hate all the options, and again, doing nothing isn’t one of them. Tomorrow is my pre-op so I will talk to my surgeon and see what he thinks. And I’ll also look into things more with my insurance. And I will make a decision. Because I have to.

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Decisions, decisions

Posted in Cancer, tagged , , , , , , on April 3, 2012| 8 Comments »

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?

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