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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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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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We live in a genuinely good world. People want to help each other. They care. I truly believe this. What, you don’t agree? Just look around!

I’ve spent the last hour watching the stories of Oklahoma. The caring, courage and strength shown by everyone from those teachers who did all they could to protect the students huddled with them in the bathrooms to the strangers rushing to the sites just to help anyone they could is awe-inspiring. Then The Voice opened with a somber message for Oklahoma, followed by a special tribute performance by Blake Shelton (who is from Oklahoma) and Miranda Lambert, with the words “To help disaster victims, please donate at redcross.org or call 1-800 HELP NOW” across the bottom of the screen.

oklahoma

I have loved ones in Oklahoma, family and friends I immediately worried about as soon as I heard what was happening, so I posted a message on Facebook. Now the site is flooded with pictures, status updates and prayers for all those in Oklahoma – and I know many of those who posted don’t personally know a soul in the state of Oklahoma. But they care.

On my way home tonight I got a call from my oldest Goddaughter. She was bursting with excitement over her day. She is a sophomore in high school and is involved with Best Buddies, a program for students with intellectual and developmental disabilities. They participated in the Special Olympics today and, as if that wasn’t excitement enough, the Franklin Police Department gave them a formal escort back to the school (“Just like celebrities!” she gushed) and then practically the entire school was outside to welcome them back and congratulate the Best Buddies. That’s just nice.

And people don’t just support each other verbally – they open their wallets, too. More than $30 million has been raised so far for One Fund Boston, to help the families of those killed and most seriously injured in the bombings at the Boston Marathon, barely a month ago. $30 million. That’s amazing.

But money can’t buy everything. Dana-Farber recently interviewed me for one of their publications. (This is the blog written based on the full article.) They wanted to know why I agreed to donate tissue. For me, it was a no brainer. Why in the world would I say no? Working for Genzyme, I know the importance of research and clinical trials. I was going to be in surgery anyway, so why not let them take a little more, so hopefully it will lead to improved treatments or even a cure. It won’t hurt me and could help others. Take extra tissue, extra blood, whatever can help!

None of this is unusual. This is every day life. People are genuinely good. They want to help. Don’t let the bad overshadow the good. See the sun through the clouds. Be the change you want to see in the world – lead the way and lend a helping hand (or tissue) when you can. You never know whose life it could someday save: yours, your son’s or your future grandchild’s …

 

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