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Posts Tagged ‘mastectomy’

One year ago today I shaved my head. So many other things were happening – I was moving, I had just started chemo, my relationship was ending, I fell and fractured my arm and bruised my knee – and then my hair started to fall out, so I shaved it. I remember the day so well; thinking about it makes me feel like I’m reliving it. (It all really hurt, some mentally and some physically, so I’m not going to spend much time thinking about it or rehashing it here.) But then in other ways, it feels like it was a lifetime ago. Sometimes I’m amazed at all that happened in the span of a year!

Last night, I took a break from unpacking (yep, I moved again!) and Tina and I went to see Tim McGraw at the Comcast Center. And of course he sang Live Like You Were Dying. Just as last year when I saw him perform it live at Gillette, it wrecked me. As I listened to the words (and cried my eyes out), I thought. Have I lived like I was dying? I know that was my original intention, but what have I really done in this past year? The first thing that jumped in my head was “survived.” I have survived the year. I fought through the year. I struggled to remain some semblance of normalcy through the 24 weeks of chemo and six weeks of radiation. I bought any beauty product that I thought might make me look more normal while bald. I tried to keep everything going even when I felt like just going to sleep.

I didn’t go sky diving. I haven’t been mountain climbing or bull riding since my road trip in 2010. I’ve tried to stay close to my friends and family, but I haven’t seen or talked to them nearly as much as I would like or feel I should. In fact, my life has seemingly resumed its normal chaos, pace and craziness. Maybe that’s not a good thing. Maybe it’s time to change that.

The problem is, there simply is not enough time in any day, not enough days in a week, not enough… well, you get it. There are so many things I want to do and never, ever enough time to do it. So maybe what that song means is not just that I have to rush to do all the things I want to do (in case I die tomorrow), but to take the time to do the things that really matter. To spend what precious time you do have wisely. I need to think about that. And I will. But for right now I am happy and thankful. Happy and thankful to have hair again, to be settling into my new apartment, to have a job I love, and family and friends who mean the world to me. And that I don’t have to go through chemo this summer and remember to put lotion or a hat on my bald head!

Tim2013

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So the disappointing news about the surgery wasn’t the worst thing that happened last week. In fact, my conversation on Friday with my physical therapist put the one with my reconstructive surgeon to shame.  It’s taken me until now to digest it all – in fact, I don’t think it’s really sunk in yet, but I decided I need to write about it to get it out of my system and start the new week fresh.Long story short: she told me that I am supposed to wear the damn sleeve and glove every day for the rest of my life. Yes. Every. Single. Day. Forever. You can imagine my response. In my head: F@$% that! In reality: “You’ve got to be kidding me?!” Her response? “No, I am completely serious. You’ve see what happens when you don’t wear it – the swelling comes back. You need to wear it to keep the lymphedema under control.”

The miserable glove and sleeve

The miserable glove and sleeve

She went on to inform me that while she “didn’t want to scare me” if it got worse, she and I would become best friends because we’d need to go to wrapping in which case I would have to go there every day for about two weeks, 7-8 hours a day to have my arm wrapped the entire time. You’ve got to be kidding me. Frankly, this is all way worse in my mind than cutting my chest off.

So every day, must do the massage, and the exercises, and wear the sleeve and glove. Ugh. I honestly can’t comprehend this right now. Just when I think I get to go back to being somewhat normal. I just want to scream.

I came home rip-roaring mad (it didn’t hurt that a family member had called and given me other disappointing/frustrating news), and told Nick all about it, ending with, “They expect me to wear it every day for ever – I don’t think so!!!” (Maybe there were a few bad words mixed in there too…) And once again, Nick just looked at me and said, “Mom, don’t be stupid. If it’s going to help you, you do it.” Ugh. When did he become the parent?

I know logically that he is right. But I don’t want to. I hate the sleeve and glove. They’re grungy even though (or because) I wash them. It’s summer and they’re hot. Mom is going to try making some lightweight, fashionable sleeves to go over the medical sleeves (which are really expensive or I’d get all different ones like those from Lymphedivas). And they make it obvious something is wrong with me. People are always asking me now what the sleeve and glove are for, and because explaining what lymphedema is can be confusing, I just say “cancer related – my arm swells.” And it used to be when they would ask how long I have to wear it for I would say “just a little longer.” Not any more…

So I need more time to let this sink in. I’m not going to say I’ll wear them every day forever, but I won’t rule out wearing it the majority of the time. We’ll see. I have a lot of research to do…

 

 

 

 

 

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I felt stupid as silent tears streamed down my face as I walked through the bridge connecting Brigham and Women’s, where I’d just seen Dr.H, my reconstructive surgeon, and Dana-Farber, where I was parked. And I was mad at myself for not making it to my car before crying.

This was the appointment where I was supposed to be cleared to have the implant surgery, so I could start to feel normal again, rather than have these two solid rocks sticking out from my chest. But instead I learned that my body just isn’t ready. I quickly explained that I’m seeing a trainer, and my physical therapist, and that I can ask them for exercises to loosen me up, and Dr. H looked at me sympathetically and said ‘Its not you, dear, there’s nothing you can do. It’s just your body, your tissues just aren’t loosening and ready.” Then he patted my arm, smiled broadly and said ” If you do find a way, let me know – I have 250 other patients who would love it!”

I hate it when there is nothing I can do, when it is completely out of my control. I left feeling totally and utterly disappointed. I really thought the end was somewhat in sight. But now I can’t even think about scheduling the next surgery until I see him again in September. Ugh. This really is the neverending story. Hence the tears. As soon as they started flowing I made a pit stop in Dana-Farber’s Healing Garden, the oasis where I feel a little less stupid crying, and usually can calm myself down.

Why did I feel stupid? Because this is simply a little set back. It’s cosmetic, essentially. And people in these hospitals have so much bigger problems. I am lucky. I am done with all treatment but tamoxifin. My hair is growing back. And I am going to be fine. So really, the tears were unnecessary. I wish my mind could have just convinced my body of that! I guess we can’t control everything. Or, sometimes, anything. And we just have to wait.

When Nick and I both got home tonight I told him my disappointing news. He hugged me and said he’s sorry, but maybe it’s for the best. I looked at him like he’s crazy and he just shrugged and said “Hey, you’re the one who always says everything happens for a reason, so maybe there’s a reason for this.” How can I debate that? I can’t, so I will listen and I will try to be patient. Definitely not one of my virtues…

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