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Taking it Easy

It’s not easy taking it easy. It’s never been something I’m good at. So while my chest hurts, that pain is more bearable than trying to stay still.

Surgery went really well on Wednesday. Dr. H was able to go in the same old scars and he was able to avoid drains. I was very relieved to wake up and learn both of those facts. I got to choose my painkillers, so picked those that impact my mind the least (can’t stand being fuzzy from medications), and went home that afternoon with one overarching order: to do absolutely nothing for at least one week.

I’m not supposed to lift my arms, have to keep them by my side, and am supposed to just rest, staying on the couch or in bed. Then after the first week or two, I can start getting up and slowly doing stuff again. The line that most made me smirk? “No lifting more than 10 pounds for one month.” I think my purse weighs at least 10 pounds! It’s a good thing most of my holiday shopping is done…

So I’m doing my best but am already going a tiny bit stir crazy. I so appreciate that my mom is here, cooking, cleaning, doing laundry – but it is so hard to watch someone do those things in your home, and not get up and help at all! I’m taking deep breaths, though, and trying to stay as still as I can…

I was allowed to take a shower for the first time today and that was good, except it’s really hard to wash your hair without raising your arms… but at least it wasn’t the psychological shock that showering for the first time after the last surgery was. I knew what to expect this time, and I know how much better it will get over time.

For now I’m just very thankful to feel somewhat normal again. Yes, my chest is sore and achy, but it is no longer hard as a rock. (And yes, I admit to poking myself several times and smiling at them being squishy once again!)

So while it is definitely not easy taking it easy, I also don’t want to mess up Dr. H’s handywork, or cause myself any more pain than I’m already in. So I will do my best to follow doctor’s orders and continue to rest… I see lots more movies, books and possibly some online retail therapy in my future…

Overload

I think my head is going to burst. Way too many things running through my mind, and I really can’t focus on any of them.

Today I was 100% focused on helping Tina and family do our best to convince the Parole Board not to release Scott’s killer. It will be several weeks to several months before we will know their decision, but I am confident we did everything possible and pray that justice will prevail.

In fact, I was so focused, it wasn’t until I went to my car and heard the voicemail from the hospital that I remembered I was supposed to call them to confirm my surgery by 3 p.m. Oops. Luckily they were still there and confirmed when I returned their call.

(Pleeeaaaasssseeee do not be offended if you are one of the dozens who’ve asked me this question) but no, right now I am not too excited for surgery. (Tissue expanders are being replaced with implants – finally.) I don’t feel like I have any of that emotion to give. Yes, I am thankful that I will finally get these rocks off my chest and start to feel some semblance of normal again, but no, it’s not the end. It will be months for these wounds to heal, and then I can do the nipples. And even then, although it will be physically over (besides the lovely lymphedema), there will still be somewhere between 4 and 9 years more of Tamoxifen. Honestly, it will never be over, because then, after I go off my wonder drug, I will worry about recurrence…

This feels somewhat like when chemo ended and people wanted me to celebrate. I’m just not feeling it. However, some have suggested a birthday party for my new boobs each year – now that is an idea that makes me smile! I’m not sure how my youngest goddaughter will feel about sharing her birthday with them, but when she’s older she’ll probably get a kick out of it – at least I know I’ll never forget the date! (And it seems so much more fun to remember that date than dates like when I found the lump, got the diagnosis or had the double mastectomy…)

So between the hearing, surgery, birthdays (my 10-year-old Goddaughter and my 102 year-old Nana), holiday parties, decorating, shopping for the holidays, trying to make sure all is wrapped up at work (and push it all out of my mind from now on), etc., etc., I’m fried. I’m actually looking forward to being drugged up tomorrow (uh, well, I guess today now since it’s 1 a.m.). Maybe it will quiet my brain enough that it will reset and all will suddenly be clear. Ha! I can hope, right? At least I know I’ll be amused with mom and Nick taking care of me until Cory’s down this weekend. And with Tara and Mark at the hospital, too, I know I don’t have to worry about anything. And no, Tina, there will be no skyping to laugh at my drug-induced musings – although I’m sure they will have fun telling you all about it…

Change the World

Last Thursday I spent the day with 10,000 women. (A dream for the few vendors lucky enough to have a table, and yes, very long bathroom lines.) I’ve always wanted to go to this conference – The Massachusetts Conference for Women. I knew it would be a day of learning, female camaraderie and, most of all, inspiration. It was all that and more. Cory asked me that night what my favorite part was and I was stumped. “Ooooh, that’s hard,” I said, “all of it!” And when Tara and I were comparing notes after – since we decided to divide and conquer some of the sessions – I looked at her, shook my head and said, “Well, now we just need to figure out how we’re going to change the world for the better.” That’s how you feel when you leave an incredible conference like that.

Those of you who follow me on Twitter or are friends with me on Facebook know I was posting quotes throughout the day. (If you missed it and need some inspiring words of wisdom, go back to December 5 on my Twitter feed.) What has stuck with me more than any other was not any of the people or sessions that I went there to see, but a surprise last minute addition: Nobel Peace Prize winner Leymah Gbowee. She is a Liberian peace activist, trained social worker and women’s rights advocate. She told us in a very straight, matter-of-fact manner, as if we were a bunch of girls gathered for afternoon tea and catching up, how she helped to bring together Christian and Muslim women to help end Liberia’s Civil War in 2003 – when she was just 31. Over and over in my head I keep hearing her saying the words, “exploit your collective power.” Basically, she was saying – much more eloquently – hey, you! If you believe in something, find a bunch of other people who believe in the same thing, join together and you can make anything happen! And I know she’s right.

One of the main reasons I accepted my job at Genzyme was because I was told repeatedly by all the people who interviewed me that I could make a difference in the lives of people with rare diseases. And that has proven true, especially as I got more and more involved in the Genzyme Running Team (GRT) and helping to engage employees, create patient partnerships and raise funds for NORD (the National Organization for Rare Disorders). The Running for Rare Diseases Genzyme Boston Marathon Team – a small subset of the GRT – is such a prime example of what Leymah is talking about: the relationships they are building, the increased awareness of rare diseases like Niemann-Pick Type A, Homocystinuria, and Pompe, and the funds they are raising – none of this could be accomplished by one person alone. It is because we are all joined together for the common purpose that we can make a difference.

Today I am going to be joined with another group, to try to exploit our collective power in another way: to prevent a killer from leaving prison. On May 31, 1993, Scott was murdered when he tried to stop two men from robbing the Walpole McDonalds, where he was working. Today, because of a deal he cut, the one who actually pulled the trigger is eligible for parole. I will be in court with my best friend Tina – Scott’s Irish twin – and her family to do everything we can to prevent him from returning to the streets and taking more lives. Tina has gathered many written testimonies and signed letters protesting his release, and several of us will be there to read as many as we’re allowed, to make it clear that it was not just any life taken that day: it was Scott Christopher Down, loving brother, son, friend. A hysterical, determined, unique blonde boy with the most incredible sparkle in his eye. He was always determined to help change the world for the better. Don’t worry, Scott, you live on in Tina, Jason, their incredible children, your parents, friends and all of us. We will not let you down. xoxoxo

Scott Christopher Down

Scott Christopher Down