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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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Curt Schilling, the former World Series Champion Red Sox pitcher just announced to the world that he has cancer. Tears welled up in my eyes. Not because I know Curt personally, but because I know exactly how he felt when he heard those words, “You have cancer.” It was probably the same way my friend Monica’s mom felt when she was diagnosed. And Greg. And Lisa. And Patrick. And Bonnie. And Giuliana. It doesn’t matter if you’re famous, if you’re young, old, a guy or a girl. The world as you know it has ended.

Cancer doesn’t care if you’re rich or poor. You can’t buy your way out of cancer. And the doctors, nurses, and other healthcare workers at Dana-Farber Cancer Institute, Brigham and Women’s Hospital, and I’m sure other hospitals, treat you the same regardless of your bank account. They want to help you beat it, whether your name is in the newspaper or not.  

I hate that anyone has to go through what I did – and some much worse. If I knew Curt, I would tell him the one thing that matters most: It’s all about your attitude. Stay positive, truly believe you will beat it, and (with lots of prayers, support and your dream team of doctors) you will. Be like Monica’s mom who, when she lost all of the hair on her head, simply said she’s happy to be saving money at the hairdresser. Because when it comes down to it, she’s no different from you, Curt. Cancer doesn’t care. But luckily people do.

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There is never enough time to think or plan. There is always so much going on! When does it ever stop??? I guess that’s what I need to learn: to not let it get that way. To make time to think and plan. Otherwise it will never happen. Of course, we all know what happens to the best laid plans – things like my 2012. But  you can’t let that stop you.

There are such things as over thinking and over planning. I’m constantly coaching my girlfriends (and reminding myself) not to over-analyze things their boyfriend/husband/lover/dream boy does – we’re never going to figure them out, anyway. And sometimes when you over think a decision you end up with the wrong one – sometimes you’ve just got to go with your gut. Over planning is something I can definitely fall into. Nick was telling Cory the other night, “Just wait ’til you go on vacation with her! She’ll plan your every second and have you going so fast, you’ll never be able to catch up! You should’ve seen Gramma and me trying to keep up with her in Rome.” And my mom chimed in, “That’s why we just gave up and went to the pub.” I admit, I was bad on that trip – and I vow to never over plan a vacation like that again!

What I have to be careful of now is to not over plan my life. I am so thankful to have my life and energy to really live it (and my eyebrows, eyelashes and hair on my head), that I’ve had a tendency to say “yes” to most everything, and to try to fit everything in. I’m always going, going, going, when one of the things I vowed less than a month ago was to slow down. (I think I need to print my resolutions and keep them with me to make them actually stick…)

I did pass up a few things this week, like I resisted buying concert tickets to see shows I’ve already seen – I don’t need to see every country show that comes to town! What I didn’t pass up were things that really matter to me:

  1. I signed up for the BAA Distance Medley. That is the BAA 5k in April (two days before the marathon), the BAA 10k in June and the (GULP) half-marathon in October. There it is – I said it in my resolutions and now I have a date to work toward. And boy do I have work to do! I haven’t been running much since I hate the cold, and I found out that they have a mandatory finish time of two and a half hours. That means I will have to cut my 13 minute plus mile down to 11:45. We’ll see… luckily I have connections with a certain running team and trainer who I am sure will give me a few tips…
  2. The second thing that I didn’t pass up actually caused me to tear up. I received an e-mail from Olivia Achtmeyer inviting me to be a model at this October’s Runway for Recovery event! I don’t think I’ve been to a more moving fundraiser than Runway for Recovery 2013. Seeing all those women (and some men) with their families, celebrating the survivors and honoring those they’ve lost, in such a supportive, energetic environment – I can’t even do it justice trying to describe it. Go to the site and check out the  video. And mark your calendars for October 16, 2014 to see me walk (dance, strut, I don’t know – just hopefully not fall!) down the runway at the Revere Hotel in Boston, all to raise money for children who’ve lost their mothers to breast cancer. I can’t think of a better way to celebrate my second year of survivorship.
  3. Finally, I am going to book a flight to Florida for a few days to see my Dad, Maggie, Steve, Kelli and my crazy handsome nephews. I miss them and don’t see them enough. And there’s never enough time or a good time – so sometimes you just have to make time!

These are the kinds of events I’d like to fill my calendar with…

 

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I woke up and heard Cory telling his sister on the phone that it was going to be a rainy day. I reached over and grabbed my phone and saw that not only was it not raining yet (only 60% chance at 9 am – yes, I slept until 9), but it was 46 degrees out – woo hoo! Because today is the first day I’m allowed to start running – again.

I’ve had more starts and stops in this short running career since I was inspired by Tara and the Genzyme Running Team to take it up in the late fall of 2011. Ran my first 5k that December (the Jingle Bell Run – so fun!), then found the lump and got the breast cancer diagnosis in March 2012. Surgery quickly followed. No running for a long time. Start back. Chemo. A little running but not much energy to run – then afraid I’d fall with my numb toes and soles of my feet. Lymphedema set in – so glove and sleeve when running from now on until eternity. Then a bit of running, but winter and radiation and the combo was not my favorite – and still little energy and numbness. I ran my first 5k back, the BAA 5k, the day before the Boston Marathon – it was strange that I got to cross the finish line when so many of my friends and family didn’t get to the next day. I worked my way to my first 10k – the BAA 10k, their first event after the marathon. Since then it’s been some running, walking, a stupid fall – and then surgery again. (Oh and winter – which we know I hate to run in the cold.) But now hopefully the last surgery is done and I’m allowed to start running – again.

So back to realizing it was warm (relatively) out. I know me. If I didn’t roll out of bed and get in my running clothes and out the door right then, before the rain, it wasn’t going to happen. And I have new sneakers to break in!

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So I did. And the second after I got outside and snapped that picture of my new sneakers, it started to pour. Of course it did. I thought about going back inside, but thought “Amy, you just posted a picture saying you’re going for a run – you have to run at least a mile.” (Well, run/walk – remember, I do intervals.) Argh. Fine. I turned up my music, turned on Map My Run, tucked my phone in my sleeve and started to run. (Quick side note and shout out to awesome Matt O’Shea for sending me info on how to make Nike+ show my map while running – I remembered the tip halfway through, tried it and it worked! May switch to that app from now on. I like the cheering. 🙂 Thank you! )

Luckily, after about a mile the rain stopped and it just remained… dreary, and at least not cold. And heck, I’d gone a mile – I might as well go another half before turning around, right? Which brought me to Kenmore Square:

20140111-104108.jpgAll the restaurants made me realize I hadn’t eaten anything, so definitely time to turn around. As I was running by a store window I caught a glimpse of myself and realized: it’s the first time I’ve been able to run with a real pony tail!

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Kind of silly, I know, but a milestone that made me smile… And as I ran I had various aches and pains – first my knee, then my hip, then my ankle, and always slight throbbing on the right side of my chest, but all things I can work through. I think my body is just shocked it’s moving again!

I made it back, slowly, but having put the first 3.1 miles on my new sneakers – so basically a 5k. Not bad for the first venture out. It will be a long road to my goal of a half marathon this year, but I know I can do it. And hopefully no more start/stops in the foreseeable future…

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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!).

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  • 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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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…

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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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