Archive for June, 2013

It occurred to me that there are so many cool things going on that I want to spread the word about, so I created a new widget on the right of your screen called Upcoming Events. I’ll try to keep that as current as possible, and will usually provide a link for more info, too.

Learn: Bright Pink Boston is hosting Breast and Ovarian Health 101 on Tuesday, June 11, 6 p.m. at the Boston Public Library. “Become empowered to be proactive with your breast and ovarian health. This educational workshop could be life saving for you and/or someone you love!” I’m going and it would be great to see friends there!

Walk/Run: Some of our Genzyme Running Team members have teamed with employees from other Cambridge area life sciences companies to organize a 5K to remember those affected by the Boston Marathon bombings, to raise money for the One Fund, and to recognize local police officers for their service. You don’t have to work for a biotech – everyone is welcome! Thursday, June 13, 4 p.m., Genzyme Center, Kendall Square, Cambridge: Cambridge Life Sciences Memorial 5k for The One Fund

Walk/Run/Roll: This Saturday, June 15, 10:30 a.m.at the Massachusetts Hospital School in Canton is the fourth annual Spina Bifida Walk-N-Roll! I’m not sure if I will be able to make it, but please support my cousin Hannah’s team, Hannah’s Banana’s: http://www.walknrollsbagreaterne.org/ng/index.cfm/aa26888/regPages/pledge/HBANANAS97/

Paint: Urban Art Bar Event to Benefit Bright Pink Boston, Wednesday, June 26, 6:30 p.m. “Sip, socialize and paint at the Urban Art Bar and benefit the Boston chapter of Bright Pink!” Really wish I could go to this, but believe I will be away for work. Please go and have a drink for me – and have fun painting. 🙂

Walk with Us!!! I am FINALLY getting organized and really getting our Boston Marathon Jimmy Fund Walk Team (Sunday, September 8, 2013) rolling. Please join our Team Inspire Boston – sponsors are also welcome/needed! I’ll post more about this soon, but no need to wait – sign up or donate here: http://www.jimmyfundwalk.org/2013/teaminspireboston Thank you very much!

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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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