Feeds:
Posts
Comments

Posts Tagged ‘connections’

The Most Selfish Thing I’ve Ever Done

Posted in Boston, Cancer, connections, Decisions, Dreams, family, Fundraising, Home, Planning, prayer, recovery, work, tagged , , , , , , , , , , on December 11, 2014| Leave a Comment »

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!

Read Full Post »

Not All Happy Endings

Posted in Cancer, chemotherapy, connections, prayer, radiation, recovery, tagged , , , , , , , , on August 13, 2014| Leave a Comment »

It’s 2014. No one should die of cancer. It has to stop.

Almost exactly two years ago, in August 2012, a friend from high school messaged me and asked if she could pass my blog on to her cousin, who was also battling breast cancer. Of course, I told her, that’s why I write this – to try to help others through it. “Thank you, Amy,” my friend replied, “She just read your first blog and is crying her eyes out… she can relate and feels like no one understands.”

It wasn’t long before my friend’s cousin (who was always very private, which is why I am not using her name) and I became friends on Facebook, and then exchanged messages. “I can relate to your blogs so much!!” she wrote. “Thank you for sharing your story. I would love to be able to meet you someday. Good luck with everything! We seem to have similar stories. I am currently getting my second round of chemo (the strong stuff!). I started last March w/chemo for 12 straight weeks, had a radical mastectomy (right breast) in June and now I have 4 of these absolutely sucky chemos. After this is over I need to have radiation. Sometime next year I will have reconstruction. Stay strong & positive like you have been!”

Yes, we had similar stories, even a similar timeline. But, for some reason, I am here and she is not. She passed away yesterday. My heart is broken. It’s just not fair!

We exchanged a few more messages after that first one, sometimes she commented on the blog, or a picture, but we never got to meet in person. I naively thought she was, like me, on the road to recovery. I had no idea she had gotten sick again until 10 days ago when my friend messaged me:

“Amy, I just wanted to thank you for being such an inspiration to me and my family… especially my cousin  who has battled cancer. Your blog really helped her on her journey. Unfortunately, her battle is coming to an end but I just felt you should know that many a days you helped her get thru it. My love to you and your family!!”

I was shocked. Horrified. But her story was similar to mine??? How could she be dying??? She’s a mom – what about her kids, and everyone who loves and needs her??? But that’s how this miserable disease is. It doesn’t care if you have kids, are happy, love life. Rich, poor, whatever. And the fact is, you can never be sure you really beat it – it can come back at any time.

So now I’m going to go cry some more. For this life that was taken much too soon, and for all who loved her. And I’m going to be even more thankful now than ever for every minute that I get here on earth. I realize how truly lucky – so blessed – I am to still be here today. We don’t all get happy endings, no matter how much I wish we did…

 

Read Full Post »

Reflect: It’s the Thing to Do

Posted in Cancer, Decisions, Discovery, Dreams, family, prayer, tagged , , , , , , , , on February 24, 2014| Leave a Comment »

 

Ever since my birthday, I’ve been thinking about what to say in this blog about turning 40. Finally, last week, after the idea kept coming back to me, I decided to write “40 Things I’ve Learned in 40 Years.” I wrote 30 of them, decided that it was much too long for one blog entry, and split it into two parts. I was about to publish it when I decided I’d better write all 40 (both parts) before publishing one of them in case something that came at the end would fit better at the beginning, or vice versa. (You writer friends know what I mean!) Since at that point it was well past midnight on a work night, I pressed save and closed the laptop.Fast forward to the next day after work. It was my first night in a long time that I got to just go home after work (at a normal hour) and actually have a few hours to do whatever I wanted (rare, precious time). I decided what I most wanted was to go through the bags of gifts from my birthday and write thank you cards. (Kristen, you’ve taught me well.) More than anything, I love the thought put into the cards and gifts from my dear friends and family. And amongst them all, I found a letter that I hadn’t seen in the craziness of the party. I opened it and laughed out loud! It was from Vanessa: a list of things she’s learned since she turned 40! I figured it would be similar to the list I was making, but was surprised to find that it’s not. In fact, the things I’ve learned in my barely 40 years hardly overlap with the things she’s learned since turning 40. I thanked Vanessa profusely for sharing her wisdom and asked if I could include it here – and she said yes. Thank you, Vanessa! Enjoy all! (And I’ll share my 40 things later this week…)

February 3, 2014

Happy Birthday, Amy!

Hi there,

I’ve been thinking about what to buy you for your birthday for some time now. I thought about donating to causes and non-profit organizations in your name. I thought of milestone pieces of jewelry. I thought of kitschy-mementos to honor your birth year. They were all good, but they all rang hollow. Besides, what do you buy for the person who has everything? I mean, turning 40 is huge.

That’s when I knew what I would get you. Turning 40 is a distinct rite of passage. If you’re a woman, that journey is colored with complexities, shaded by doubt and confronted by bold dreams. I wish someone had told me that instead of texting me an unimpressive nursery rhymed, rhetorical “Lordy, Lordy, looks who’s 40” message.

So my friend, even though I’m only six months ahead, here’s what I’ve learned since turning 40:

  1. Life is just beginning; it’s not a cliché. Long before I heard Oprah bellow to her audience about turning 40 and hearing celebrity guests like the late Nora Ephron talk about using scarves to cover “your aging neck”, I never understood what the fear was all about. We’re fortunate to be alive at this time. Yes, the glass ceiling has cracked a bit and salaries of professional women have shown marginal increase, but our generation is not judged as failures if we’re not draped on some dashing Prince Charming’s arm by a certain “magical age”. No, women like us are leading the way. We may not have all gone on an 83-day-long cross-country-trip across the U.S., but we’re living by the rules we set for ourselves.  Sometimes there are stops and detours in that journey. When cancer threw you a curve ball, you stared that sucker down and kicked it in the groin—grinding in your stiletto for good measure. You have your whole life ahead of you. A life that’s yours to do what you want, and pursue your dreams and goals.
  2. It’s OK to rid yourself of toxic people. The key to enjoying the next 40+ years is peace. You can’t get peace if your life is full of toxic parasites who inject negativity and depression into your world. We all have them. They masquerade as fun friends, rational-thinking relatives and the occasional acquaintances maligning you with misguided, misinformed missives of mayhem. One of my friends at church reminded me I told her to be careful about who she allowed to “speak into [her] life” years ago.  It’s still true today and it’s a creed I live by now. Hurt and hurting people flock to those with similar experiences and/or those who seem to have it all together. That’s understandable, but it’s exhausting when those individuals drain their sorrows into your generous heart and are too caught up with their own needs to discern when you need an ear. I’ve learned to let them go. I need to be surrounded by people of like mind and attitude who know that friendship is a two-way street. One shouldn’t be forced into caring. Instead, true friends care and are there without being asked because they value precious people.
  3. I’m a big girl and can make my own decisions. For the longest while I felt like I needed to poll those around me, or get the opinion of those whom I respected, to help my decision making. As I’ve gotten older and my outlook has changed, I’ve come to the realization that no one will live with those decisions, but me. What galled me was people’s need to frequently correct and critique my decisions when they didn’t line up with what they would have done. I’m empowered now to kindly, and if need be, curtly thank them for their opinion and reinforce that as an adult I’m entitled to make my own decisions and choices. I may decide to revisit an old relationship or venture into something completely atypical from what my personality dictates. If my decisions come with mistakes, bring it. I’m a big girl and I can handle it.
  4. Turning 40 is empowering! Do you remember how you were in every past decade of your life? Did uncertainty and doubt overshadow decisions you made? Perhaps you found yourself subconsciously acting a certain way to fit in with friends, or saying particular things to impress peers or and even dressing to please a crush or a boyfriend? One of the many great things about turning 40 is you no longer feel pressured to do those things. I frequently hear myself saying, “I’m at an age and stage in my life where I don’t feel I need to (fill in the blank).” It is so liberating.
  5. Even though I’ve accomplished a lot, I still want to do more. Like me, you’ve done more personally and professionally than many people you know. If others were to view our dossiers, our lives would look successful, glamorous and extremely well-traveled. And that’s understandable, but I still feel as though there’s more to do. I still feel unfulfilled in some areas. For a while I listened to others who told me I “was too hard” on myself. Then I realized that I’m not hard on myself. There are things I want (or need) to do. And that’s OK. I’m constantly looking to expand my horizon and conquer new things. We shouldn’t feel guilty about wanting more from life.
  6. Put God first. I don’t consider myself religious, but I have a personal relationship with God. I pray or talk to Him as much as I can. I even have “date nights”. I know. It sounds hokey. Basically, I block off an evening, prepare a fantastic meal, key up some worship music on my MP3 or laptop and spend my evening listening to music, reading my Bible and pouring out my heart to Him. Sometimes I cry. Sometimes I yell. Sometimes I’m quiet. Whatever I do, I am always deeply satisfied after. You’ll find your own way, I’m sure. But who better to pour out my hopes, dreams and fears to but the One who made me? I couldn’t have made it as far as I have without Him and I tell all my friends the same. Put Him first and you’ll never regret it.

I’m sure you’ll receive numerous gifts and well-wishes. You’ll be surrounded by those you love and who love you just as much. When everybody’s gone and you’re left with your thoughts, I hope you’ll find these observations useful.  Like I mentioned before, we are alive in a time in history where the world is literally at our fingertips. All you have to do is pick up your phone or tablet and you will instantly have access to review opportunities and dreams before you pursue them. You’ll chart your own course, make your own rules, and live your own dreams. So happy birthday, my dear, the best is yet to come!

– Vanessa

With Vanessa at my 40th birthday party.

With Vanessa at my 40th birthday party.

Read Full Post »

Older Posts »