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Just writing that title made me smile and also want to cry a little simply because I am so thankful to get to be 42. Actually, I did both last night: Cory rolled over after midnight, said, “Happy birthday!” kissed me and then started to fall asleep. I, however, felt this huge gush of relief to have made it to 42 and, while I tried to hold it in (knowing he’d freak out), the tears started flowing, the convulsing sobs escaped and he bolted up, “Are you ok? What? What’s wrong???”

“I’m just… so happy… and thankful… to get… to turn… 42,” I eventually got out between the sobs  He didn’t quite believe me at first. “Really? That’s it???” he asked doubtfully. Really.

Not everyone gets another birthday and, while maybe you don’t have to bawl your eyes out over it, you should be grateful God is letting you have more time on earth with the ones you love. Yes, we may have more wrinkles, more weight, a bit more gray and not be able to do everything that once came easy to us – physically and mentally – but we are here.

I won’t bore you with a list of my blessings – although I will share that I am blessed to be writing this blog from a beach chair in the beautiful Dominican Republic:

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While here, I’ve been thinking a lot about how to make 42 one of my best years. Those who know me will agree I am a generally happy person with few regrets (like I wish I fed Nick better when he was little), but I do need to make some changes in my life. So here is what I will attempt (nice caveat, huh?) to do differently in my 42nd year:

  1. I am going to think about the things I put in my mouth and try to eat slowly. I’m a stress eater. A habit I must break if I want to continue to fit in my clothes. And I must get back to running (though my marathon days are over) and yoga or at least some exercise on a regular basis.
  2. I am going to continually remind myself what is really important. Not let myself get so incredibly stressed out (that I’m stuffing food in my face – flashback to #1), or feel like I have to be the first one in the office every day and login every single night. They say your best ideas and most brilliant thoughts come in times of absolute calm, and that’s why people should meditate and practice mindfulness. I love the idea but need a loooooooot of practice! And it’s not just that “me” time I have to make more of. I always want to see more of my friends and family – there is never enough of that. And that is what really matters.
  3. BUT I’m going to try not to feel guilty for not being able to do everything or see everyone. As you may have heard me say, guilt is a wasted emotion. And yes, I need to keep reminding myself of that. We are all better at giving others advice than ourselves.
  4. This year I hope to realize that I may not be able to change or save the entire world but I can make a difference every day even in the little things I do. (That’s what I dreamt about last night after my crying attack – trying to save the world. I failed. Sorry.) But seriously, did you see that ad during the Super Bowl? We can all turn off the faucet when we brush our teeth – and so much more, without shouldering the entire burden of world peace.
  5. Be present more. Stop looking at my phone so much. Don’t freak out when I’m disconnected. This vacation in paradise is helping me practice that. And yes, I may be spending more time online than I have in a very long time but it’s all reading my friends’ blogs and posts and news – fun stuff, not work!
  6. My most concrete resolution for myself this year is to be more responsible with my money. I am very blessed to have a great job that pays me well, and yet I still have a ton of debt and my son pays more attention to my 401k than I do. I am a smart woman and it’s time I stopped acting stupid about money. When I think how much money I throw away on silly things I want to slap myself. I’m not saying I can’t spoil myself or the ones I love – that’s why I work so hard (well, one of the reasons), but I need to know I really want something before buying just because I can. And I could probably make a bigger impact if I was more focused and thoughtful with my charitable giving.
  7. Along those same lines of thinking about what I am spending my money on, instead of scrolling Amazon for gifts (or myself), I am going to buy things from my incredibly talented friends and other artisans and small business owners like Melissa Houlihan’s designs, Jason Covert’s cool art and Sam’s aprons. And if I ever get another tattoo I’ll go to Larry DiGiusto. (Note: my mom’s my favorite artist and writer, but I still get her stuff for free. 😉 )
  8. And I will read what some of my eloquent friends are writing like writing like Sue Stevens books, Arlene Lagos’ books and blogs like Champagne Thursday by Jess and Surgical Strikes 2.0 by Dan. I will also continue to watch my friends work like Jay in Fat, Mike in Yellow Brick Road, and the reality TV like Hollywood Medium by Duffy and Pit Bulls and Parolees by Jen. And can’t forget all that Cesha has worked on including the upcoming Ghostbusters and recent Black Mass (ok, I’m sorry, I’m not really going to see that – but would if I thought it would make a difference!) I could go on and on – I have so many talented friends – and I am going to support them more.
  9. Which reminds me of my own writing and my ninth and final (for now) resolution: I’m only going to say something if I’m going to actually do it. Like writing my book. Which one, you may ask? I did start 16 and Pregnant but haven’t gotten far. The road trip book can wait. I think the breast cancer book is the most important. Approximately one-to-two new people are referred to my blog every month, even though it’s been more than a year since I really stopped updating it. I get the nicest notes about how finding it has helper her/her mother/sister/friend through their battle. Imagine how many people it could help if I put it in book form and published it?

So that’s what I really want to do in my 42nd year: Slow down, breath, learn to relax, think more, do more selectively, get a bit smarter, appreciate and help others. Makes me smile (and not cry) just thinking about it! Thank you, Lord, for this 42nd year!

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I can’t believe it’s been so long since I last posted here! Well, I think I’ve found something to write about…

With fellow Running for Rare Diseases Board Members (Jessi, Kai, Phil, me and Andrew; Not pictured - Shay and Marissa) after all - except me - finished the Boston Marathon...

With fellow Running for Rare Diseases Board Members (Jessi, Kai, Phil, me and Andrew; missing: Shay and Marissa) after all – except me – finished the 2014 Boston Marathon…

Dear family and friends,

As some of you may have known I would do long before I consciously considered it, I have decided to officially join the Running for Rare Diseases Marathon Team as a runner in the 2015 Boston Marathon. (You should see my face every time I say or think those words – scrunched up in a combination of terror and excitement, with butterflies in my stomach and sometimes tears in my eyes.)  Others may be as shocked as I still am at my decision.

Why am I doing this, you may wonder? I joke that I’m only doing this so I can buy one of those Boston Marathon jackets, but that’s not it. Ok, maybe a little bit… but if you have attended any of our Running for Rare Diseases Team events or read our blog, you know this isn’t really about running, even for a wicked cool jacket. Yes, I know I’m going to have to run (gulp) 26.2 miles on Marathon Monday and do the hundreds of miles of training in the next 100-plus days, but that’s just a formality. This is about people. Inspiring, strong, caring people. The people in the Running for Rare Diseases community. The rare disease patient partners and their families who live with challenges much more daunting, scary and personal than any sporting event, and who do so with the most positive, hopeful attitudes every day. And all the past team members – especially those who, like me, aren’t fast or born runners – who make this more like a family than a work team.

I want to continue throwing fundraisers for our NORD/Genzyme NIH Undiagnosed Diseases Program Fund and help those people out there who have been struggling for years without knowing what disease they have, and don’t even have enough money to have the initial testing done to get them into the program. I want to help them on that first step to finding an answer. And I want to get to know my own patient partner and his or her family. I want to follow the instructions on connecting that Shauna, a 10-year-old patient partner, gave us at our kick-off meeting: exchange lists of 10 things about you with your patient partner; make funny faces together; and get on the same level. Without question, I know this will be the highlight for me.

Yes, I, Amy Lee Tull Atwood, one of the LEAST athletic people ever, am running the 2015 Boston Marathon. I wonder how long it will be before those words roll off my tongue without cringing, and feeling slightly ill?

My friends Gail and Anne, both members of our Running for Rare Diseases community, asked me at the team kickoff meeting, “So are you running the half marathon?” I shook my head, scrunched up my face and whispered, “Nope. I’m running the whole thing.” They joined in my shock and excitement. I honestly don’t know when I crossed the line from “Never ever” to “How can I not?” I know that at the dinner on April 19, 2014, I was still strong in the denial I’d maintained since getting involved with the team in January 2011. I think it was just two days later at the Marathon that I cracked. There I realized that while I have done practically everything I can for this team as a Board Member, part of me still felt like a bit of a fraud or an outsider (even though Jessi said I am one of the cool kids and I was in some of the team pics). There were still things like team lists that screamed at me that I wasn’t really on the team. Most of all, while I actually felt lucky to get to know so many patient partners, I didn’t have one of my own. And this really hit home for me at Mile 14 when all the partners were holding signs for and eagerly awaiting their runner.

Some, like Tara, my parents and my teammate Beth, were nice and said, “Ok, but you don’t have to do it this year if you’re not ready.” Honestly, I feel like each year I have ramped up my commitment and this is the only next step. And I know that I will never really be ready. I’ll never have enough time and I’ll never be in well enough shape. I know in my gut that it has to be this year.

My mother also emphasized that I need to stop doing everything for everyone else, and to focus more on me. I thought about this a lot as I agonized over whether I could really do this. As usual, Phil, our team founder and leader, had some pretty insightful words. He said that this is actually the most selfish thing I will ever do. While yes, I will be running for my patient partner, running to raise awareness of rare diseases and fundraising, most of what I will be doing will be by myself. All of the running I will need to do for the next 18 weeks. The intense training, making time for runs four days a week and cross training two other days. Especially the long runs that will sometimes take me three, four, five or more hours, when it will be just me, my thoughts and my iPod. Since I can’t compromise work, that is all time away from my family and friends. And we all know I never have enough time for my family and friends even without training! (I am truly sorry for that – I so wish there were more hours in the day or days in the week…) I’m actually joining Nick’s gym so I can see him on a regular basis. (And run inside on the track since I despise the cold.)

I also question whether physically I can do this. While Tara and the team inspired me to start running, I honestly still can’t jog one mile straight – even after all this training. I still walk/run, and probably always will – which my dad reminds me is better on my knees, anyway. I am out of breath within minutes. Some of you know I am on a clinical trial for a breast cancer drug, so I checked with my oncologist to be sure I’m ok to do it, even though this drug can significantly reduce my white blood cell counts. (She said yes.) Which actually reminds me of yet another reason I feel like I have  to do this: because now I can. I think of how sick I was in 2012, when I couldn’t run a 5k. And I think of others going through cancer treatments and surgeries like I did: I want to show them that they, too, can get through it and be strong again. And I want to do this for those who weren’t as lucky as me…

But I am slooooooooowwww. My goal is to finish before they close the finish line. (Seriously.) The theory is that if you can run a half marathon, you can run a full marathon. So I promised Phil that if I could finish the BAA half (which was one of my 2014 New Year’s resolutions) in October under 3 hours, which is just before they close that finish line, then I would run Boston. My time? 3 hours and 3 minutes. Theoretically, that means (especially with the next 18 weeks of training) I should be able to finish the marathon in 6 and a half hours, and I know the finish line was still open at that point last year.

So how am I going to do this? Only with all of your support, understanding and prayers. Please don’t get mad at me for never being able to do anything or for simply being too tired to talk much. Know that I love and miss you, think about you often and am probably even having conversations with you in my head while on my runs. (Yes, this really happens. I think you all know way more than you do and I imagine what’s happening in your lives!) And when we do talk or write, please don’t mind that much of my side of the conversation will be related to Running for Rare Diseases and my training, since that will pretty much be my life outside of work.  And yes, of course, probably most of my Facebook posts, Tweets and Instagrams will be related to this, too… And I would really love to see you at Mile 14 where our patient partners, team members who will be running Providence, colleagues and other friends and family will be gathered to cheer our team on – or anywhere along the marathon route on April 20 – I will be one of the very last runners so you shouldn’t have a problem seeing me…

And yes, this means I will be hitting you up for donations. As daunting as running 26.2 miles is, raising the minimum $3,500 for the  Genzyme/NORD NIH Undiagnosed Diseases Program (UDP) Fund will be just as challenging. Please know that if you intended to get me a gift for Christmas and/or my birthday, I’m making it super easy for you! I seriously, seriously do not want anything for Christmas or my birthday except donations to my Running for Rare Diseases page (except you, Cory – you’re not getting off so easily, and anyone who is actually making me something homemade like mom). So if you planned to spend $5 on a gift for me, please instead donate $5 to my fundraising page: https://www.firstgiving.com/fundraiser/AmyAtwood/2015-running-for-rare-diseases-team No donation is too small. Every cent counts.

Thank you for your love, support (emotionally and financially if possible), understanding, prayers, positive vibes and patience with me through April 20, as I embark on this most selfish (and crazy) thing I’ve ever done.

Amy

p.s. Andrew (who is running the Paris Marathon for our team) and I are throwing a joint fundraiser – the first Running for Rare Diseases 2015 Marathon Team fundraiser – a Pub Night, on Friday, December 19 from 6-9 p.m. at the Lansdowne Pub near Fenway Park. Tickets are only $10 in advance or $12 at the door and include a raffle ticket and free apps (while they last – come early)! Hope you’ll join us!

p.p.s. Join our Running for Rare Diseases community (if you haven’t already) by subscribing to our blog, liking us on Facebook, following us on Twitter, Instagram and watching/sharing our Boston Marathon and Rare Disease Day Relay videos.

Thanks!

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I thought I could get away from cancer. I thought by ending the blog, I wouldn’t think about it every day. Ha! Once you’ve been diagnosed, it doesn’t matter that you’ve finished chemo, radiation, multiple surgeries and been declared “cancer free.” It is always there. With every strange feeling, with each routine health screening, with every glimpse of myself with hair! And now, as many of you know, cancer is my ‘day job,’ too. I wondered if working for an oncology organization would be difficult or depressing, but it’s really the opposite: it energizes me and gives me hope that we can really find a cure (or, realistically, multiple cures)!

If you read my last blog entry, you know that my heart broke over the recent death of a breast cancer sister. This must stop! Help us create happy endings by funding the research needed to find better treatments and cures for all cancers. There are many ways you can help:

Join our fabulous team!!!

Join our fabulous team!!!

  • If you live too far away, are busy that day or just prefer to donate rather than walk, while we will miss your company, we would so appreciate any donation. You can donate by clicking here – and please don’t forget to complete your company’s matching gift request, if applicable!
  • Do you need anything for your kitchen? Shop one of our fundraisers and not only can you get what you need, but a portion of the proceeds will go toward our walk!
  • Have an idea for a fundraiser that can be done by Sept. 21? Please e-mail me and let’s talk!
  • Finally, another of my very favorite events of the year is coming up: Runway for Recovery! Join us on October 16 at the Revere Hotel for my (I never thought I’d say this) modeling debut! Buy tickets here, come cheer me and the other survivor models on, and you will be helping children who have lost their mothers to breast cancer, as well as providing opportunities for health care providers who care for such patients. It’s such an inspiring night – a true celebration of life, sisterhood and survivors.
Last year, I volunteered with Genzyme friends for Runway for Recovery - and excited to be modeling this year!

Last year, I volunteered with Genzyme friends for Runway for Recovery – and I’m excited to be modeling this year!

Please remember, together we really can make a difference and help find a cure! Thank you for helping us kick cancer!!!

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If you read my last blog entry – Vanessa’s reflections – you know I started this list last month. So now I’ve been 40 for almost a month rather than 9 days, but other than that, everything else still applies…

I have been 40 for exactly 9 days now and it was just when writing that headline that it started to sink in. Wow – I’m 40! There’s just something so different when you write it versus when you say it… Anyway, I won’t dwell in awe (at least not here). I’ve learned a lot in my 40 years – especially the last two spent in the cancer world – and thought I’d share some of it here. No, none of it’s brain surgery (and much of it’s splashed in pretty graphics on Facebook posts), but sometimes it’s nice just to be reminded of the simple things we all, hopefully, eventually come to realize. So here are 40* things I’ve learned in my 40 years:

  1. Smile. Even when you want to cry, scream, throw something, hit someone. Seriously, just smile. It does help.
  2. Don’t overanalyze. Anything. Men/women, doctors’ faces, actions, words, whatever. It’s doubtful you’ll figure out what they really think/mean/intend anyway. Why waste your time?
  3. If you don’t know, ask. Ask anyone anything. It’s the only way you have a chance at discovering the truth. And it’s the best way to learn.
  4. Never stop learning. Take a class, read a book, go to a seminar, join a club. I’m going to learn French (for real this time). And maybe even how to cook. (Nah, maybe I’ll leave that one to Cory.)
  5. There are at least two sides to every story. Even the one I’m telling right now. We all come at things from different perspectives, so can rarely see the full pictures ourselves. (Like Nick says I cook better than I give myself credit for, but I wouldn’t win any contests.)
  6. Speaking of – did you know that you have to enter contests to win?! That includes the lottery. Which probably explains why I haven’t won.
  7. It can take longer to convey your thought in 140 characters than it can in 500 words. (Just ask Jessi!)
  8. Listen. To everyone. Think about what they say. Consider. Absorb. Don’t just rush to respond, explain or prove your own point. Sometimes we need to just listen.
  9. I know that takes patience. Patience is truly a virtue. One I’ve often admitted in this blog that I don’t have. (Just ask Nick – he will confirm this.) But I am trying. If you see me taking lots and lots of deep breaths, you’ll know I’m trying to be patient. It definitely doesn’t come easy to me…
  10. Keep breathing. Literally and figuratively. Yes, there are some things beyond our control in this area – like getting the cancer diagnosis at 38. But there are so many things we can all do to improve our health and that will help us breathe a little easier – especially when walking up many flights of stairs!
  11. Any day can be your last. Or your loved one’s last. So make that day – and every day – count.
  12. Tell people you love them.
  13. Don’t hold grudges.
  14. Spend your time where it truly matters – with the people you love. Yes, we all have to go to work and other obligations, but…
  15. No one really cares if your house is clean. Probably not even your mother. She’d much rather you visit her than stay home scrubbing the tub.
  16. We don’t have to do everything for everyone. Even when we want to do it all, it doesn’t mean it’s the best idea – or even physically possible. So…
  17. Learn to say no. It’s really not a bad word. It’s not even four letters. You can say it nicely: “I’d really love to but…”
  18. Learn to ask for help. Or at least accept help when it’s offered. I was struggling to lug two suitcases and a giant purse the other day when a guy offered to carry one. What did I say? “No worries, I’ve got it.” Why? Why did I say that? Accept the help, Amy!
  19. Be kind. (That means to yourself, too!) Even when others are not. You never know what is going on in someone else’s life.
  20. Share. Share what you learn, share your experiences, share your thoughts, share your opinions. We all have a story to tell. And your story may just be the one that makes someone realize they’re not alone. That’s why I write this blog. If it can help just one person, it’s worth it.

*Disclaimer: I have learned more than 40 things in my 40 years. This is just a sampling of some of my favorite things I’ve learned, not an all-inclusive list.  And yes, I realize there are only 20 above. The final 20 will be in the next blog – an exciting two-part series! 😉

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I love lists. Nothing helps me feel more organized and in control than making a thorough list. I make lists for everything: to-do lists, topics I want to cover in this blog, places to visit, lists for Nick. And I write the lists on everything from napkins to the back of receipts (and sometimes even in my iPhone) and hopefully they eventually get transferred into my Arc notebook (best invention ever: moveable pages, so I no longer agonize over what to write on the first page). And it’s the time of year for the list of all lists: New Year’s resolutions.

Before I jump into my latest list focused on 2014, I want to take a minute to look back on 2013. I can hardly believe it’s over! It definitely beat the 2011/12 combo hell year by eons – especially the last few months – but wasn’t exactly a cake walk:

With Nick and Tara, ringing in 2013.

With Nick and Tara, ringing in 2013.

  • It began with me nearly bald, with just some wisps making their way back, and still going through radiation, with one deflated boob.
  • One of my dear friends became a US citizen, at an incredibly moving ceremony at Faneuil Hall, which I was so honored to witness.
Boston, February 9. 2013

Boston, February 9. 2013

  • My birthday was marked by one of the year’s biggest blizzards – an appropriate end to my hellish 38th year – and getting to reinflate my right boob.
Disney March 2013

Disney March 2013

  • Celebrated new beginnings (and the end of treatment other than Tamoxifen) with Kevin, Tara, Nick, Mike, Shannon, Julian, Janie, Monique, Steve and Kelli, and many other family and friends in fabulous Walt Disney World.
Pre-marathon breakfast in Ashland with our Warrior paint on!

Pre-marathon breakfast in Ashland with our Warrior paint on!

  • April brought incredible highs and lows with our Genzyme Boston Marathon Team fundraisers and celebrations, and then the shocking tragic end when the marathon was viciously cut short for the team, Tara and thousands of others. It was the scariest day of my life, as I know it was for so many others.
One Fund fundraiser at Towne, April, 2013

One Fund fundraiser at Towne, April, 2013

  • And less than two weeks after the marathon, Andrew and I threw together a fundraiser for the One Fund that brought in more than $3,000 for the victims.
BAA 10k, June 2013

BAA 10k, June 2013

  • I ran my first 10k (Thanks Lisa!), and learned to deal with lymphedema. (Note to self: Don’t forget sleeve when running!) I also learned to love headbands – anything to control the uncontrollable curls (but ever thankful for any hair!).

IMG_1336 IMG_1902 IMG_2524 IMG_2534 heath aldeanIMG_3334

  • It was a summer – a year, really – of incredible concerts with my best friends and family.

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  • Fall brought the Jimmy Fund Boston Marathon Walk (thank you so much to all who sponsored us!!!) and Paris.
  • Of course, it also brought the month of Pink – and I was so thankful so many family and friends joined me for many of the walks, runs, fundraisers – and to cheer me on while I got my first tattoo!
  • Both sets of my parents celebrated 30 years of marriage – and I couldn’t be more thankful for all four of them, and that they each found each other. I know I wouldn’t be me without all of them (or have my two awesome, unique brothers).
  • The Red Sox won the World Series!
  • Several of my friends and family celebrated milestone birthdays and either met, got engaged or married the love of their lives… in fact, I have  (I can’t believe I’m admitting this publicly) Tinder to thank for getting Cory and me together, which really has made my whole life happier…
Best second date EVER!

Best second date EVER!

  • And in December I finally had what was hopefully my final cancer-related surgery: the implants. And I can finally pull my hair back into a baby pony tail. A pretty great way to end 2013…

Now, I’m not one who subscribes to the idea that resolutions are only for January 1. I make them – and evolve them – throughout the year. In fact, I just stumbled upon the list I made on the plane ride home from LA in March 2012, the night before I found the first lump and life changed forever. It’s actually a little painful to glimpse the person I was that day, so innocent of  what was growing inside me. I was thinking about cleaning out my wardrobe, getting my finances in order, running more, getting a healthier love life, career development opportunities. So… typical. Most of the list was simply forgotten, as all of my focus shifted to ridding my body of the cancer. Some of the things on that list – like go to France and join a community board – happened in 2013. Some are just making it back to my list now for 2014 – like get more involved in a communications industry organization and run a half marathon. (Half, Phil, half. Not whole. That’s not on any of my lists!) And others will probably be recurring themes on my lists forever: be healthier (run more, eat better), get organized, spend less.

But this year’s list is different. Yes, I am sure I will have sub-lists with many of those same things on it, but I want to prioritize and simplify my 2014 list.

  1. Live in the present. Cory, his mom and I debated the wording of this one, as he insisted on pointing out that you really can’t live in any other time unless you have a DeLorean and are friends with Doc Brown. But you know what I mean! Don’t dwell on the past and don’t agonize over the future. And don’t live on my phone/computer. I don’t need to see every Facebook, Twitter or Instagram update – constantly looking at my phone takes away from the real life I’m living, and the time I’m spending with the ones I love. Let yourself be in the moment, right now, right here, and enjoy it. Which really leads to…
  2. Slow down. I’m always running around, crazy busy. And it’s not always necessary, or for things that matter.
  3. Spend time with the people I love. That’s what does matter. The people in your life. And I am so blessed to have many incredible people in my life and I want them to know how much they mean to me. And nothing says that more than the gift of your time. I know I am happiest when I’m just hanging out with my friends and family…
  4. Be healthier. Ok, yes, this is on the list above, and is ‘typical’ but I can’t help it. I texted Tara the other day that as much as I hate running, I need it. I’ve been in a bit of a funk lately, grouchy more than normal and it hit me: I am simply happier when I’m running and eating better. So I’m actually anxious for this mandated rest period while my chest heals to end. Of course, I hate the cold, so the real running may not completely ramp up until spring, but I can start eating better and running on the treadmill. It will help make me…
  5. Be a better person. I stole this one from Cory. I love it. It’s exactly what I want to do this year. I want to be a better person for me, and for everyone around me – and ultimately to help make the world a better place. I want to pay it forward for all the love and kindness you all bestow upon me all the time. I’m going to think more positively and mute the negative. I want to learn – both to enhance my knowledge for my career and for enjoyment. I want people to know they can count on me, I want to realize that I don’t need to do everything myself and I want to learn to trust. I want to help people through their tough times, as so many have helped me these last couple of years. Above all else, I want to say “thank you” more, to pray more, and to make sure that everyone I love knows how much they mean to me. Kind of like Live Like You Were Dying, huh?

I know many others are thinking along the same lines as me on their lists this year. In fact, Tara posted a link to this great list on my Facebook page, and she really is right on: Resolving to Care More and Slow Down in 2014 by Doree Shafrir for BuzzFeed. Can you imagine how much happier we would all be if we all had lists like this – and actually followed through with them? I’m going to do my best to live this list in 2014. Please help me – call me out if I’m not living it!

Wishing you all your happiest, healthiest year yet! And I want to hear what’s on YOUR list!

xo

Amy

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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

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“Why, why, whhhhhyyyyy???” I woke up whining. And I hate whining. But it’s also very cold and I hate the cold. And while I love that running lets me eat and helps me not get huge, I don’t love running. (Sorry Phil.) And have I mentioned that I am not a morning person? I thought so. Yet here it is, Thanksgiving morning, when really I don’t need to be anywhere before noon, and what am I doing? Getting up. Early. To run. In the cold. Why? Because this year I can.

I never think of the weather when I sign up for these 5ks. I think of the cause (in this case Multiple Sclerosis – it’s the Boston Volvo Village 5k Road Race for MS) or the other people running (some of my Genzyme Running Team peeps) or the great people watching (people dressed up like turkeys, pilgrims, Indians and I’m sure there will be at least a few Santas).

I did, however, start to think about the weather yesterday, when I heard how incredibly cold today was predicted to be. Andrew asked where and when to meet, and I told him I’d be there if it was above 30 and not raining or wicked windy – I can’t afford to get sick with surgery less than two weeks away. Then, last night when I was snuggled warm in bed, and was thinking how crazy it is to be out in the cold period, I texted Tara.

Me: Remind me there’s no excuse not to run in the morning. I won’t get sick and it doesn’t matter that I haven’t run in two weeks or how slow I am.

Tara: Slow and steady! Something is not just better than nothing, it’s an investment in you. I’m running/walking a turkey trot in the morning. You’ll feel better for doing it.

And I know, as usual, she’s right.

So I woke up and rolled over to check the weather, figuring above 30 and I’m good, since the beams of light shining into my room already told me it’s not raining. And what does the weather say? 30 – and then “feels like 19” – ugh! I could’ve texted Andrew, told him I didn’t want to risk getting sick (which is seriously the big fear in the back of my mind, but also an excuse), but I didn’t. Because then I started thinking about last Thanksgiving.

Last Thanksgiving I couldn’t run, regardless of the weather. Thanksgiving week 2012 I finished my 24th week of chemo. It was the last, but my body ached more than ever, I had tons of numbness and tingling in my fingers and feet, and the lymphedema had just started. And I had radiation still ahead of me. Oh, and I was bald. No eyebrows, no eyelashes and no hair on my head. Running was the last thing on my mind – I was just thankful I could get up in the morning!

So today I am running. Because I can. Because God is good and has given me a great life, and a second chance, and I don’t want to waste it. 2013 may not have been the easiest or best year, but it’s been a hell of a lot better than 2012. I am so thankful for all my family, friends, and work buddies who have stuck by me, encouraged me and even pushed me when needed. And I am thankful for the new people in my life, including someone who makes me smile every day, even when he’s not in the same state! I have incredible hope and confidence that as great as things are now, they are going to keep getting better. And for all that I am beyond thankful.

Andrew just texted.

Andrew: Running?

Me: Yup. Will be there shortly.

So I better stop typing and go freeze, I mean run. 😉 Happy Thanksgiving all! Xo

Post run update: Yup. I ran. And froze. But it was worth it!

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