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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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The last couple of nights I’ve woken up in the middle of the night with nightmares. They were very different, but both had loose ties (very loose) with my old life when I lived in Blackstone and got married. I know it’s probably because I’m at that place again – major changes are happening in my life.

Today is two years from the day I had my double mastectomy. I felt like I was one person when I went under the anesthesia and another when I woke up. I mourned the old me for a long time and found that the only way I could cope with being cancer girl was to share my journey and hopefully help others who were struggling through the same shock.

Well, I can’t say I’ve come full circle as I will never be that girl again. Cancer will always be a part of me (hopefully more figuratively than literally). But I am done thinking about it every single day. I’m ready for it to be just a small part of me rather than the main focus. And that’s why I’m “ending” this blog.

I discussed this with fellow blogger Jypsy J. Book last night and she convinced me not to actually end it completely, but to evolve it once again. “Why start over with a whole new blog,” she asked. “You’ve built this one up so much and you’ve already shifted it once from your original travel blog to your cancer blog – just evolve it again.”

So this morning I texted Cory and told him that today, on the two year anniversary of my surgery, I was going to put my blog on hiatus. My phone immediately rang. “This doesn’t mean you’re going to stop writing, does it?” he asked. And that is one of the many reasons I love him.

No, I will not stop writing. I just need to figure out what I really want to write about.  I’ve felt guilty letting so much time go by between these entries – like I’ve let my readers down – but I haven’t wanted to dwell on or analyze every single cancer experience and thought that I’ve had lately. So I know it’s time to move on.

I am going to change the “About” section in the header of this blog to direct people looking for my breast cancer experience to those dates, and the travel readers to the earliest entries. And – probably in a few weeks or months – I will be back with a new focus. Of course, I completely understand if you want to unsubscribe if it’s only cancer-related stories that you’re interested in. (This is starting to sound like a break-up letter…) Otherwise, I hope you’ll stick with me for my next adventure… Thank you ALL for ALL of your love, support, positive thoughts, prayers, kind words and friendship – I never would’ve made it through the cancer journey without every one of you by my side!!!

xo

Amy

p.s. Some have asked why I’m ending this today and not after next Thursday. To be honest, this simply felt right: the day they cut the cancer from me. Everything won’t be done next week – I still suffer from lymphedema; I am on Tamoxifen for another nine or so years. But I leave an open invitation for any breast cancer sisters who want to know about the 3-D nipple tattoos to e-mail me and I will be happy to give them a play-by-play on the entire experience! I am always here to answer ANY questions – big or small – for anyone dealing with breast cancer. The silver lining from this is that I can help others through it, and that will never change.

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I don’t know why, but I’m suddenly feeling shy and hesitant to post certain things. I got the best news in a long time this afternoon and wanted to tell every stranger I walked by that (spoiler alert) I can now get nipples, but as soon as I got home and thought about updating this blog, I got nervous. Then I saw on Facebook “Duke Porn Star on What People Don’t Understand About Sex at Work” and I thought, “Jeesh, if she can talk about that, I can talk about nipples!”

I found the first lump on March 14, 2012 and this Thursday will be exactly two years from the day I received the call informing me that I had cancer. This is, and I think will always be, a tough week for me. But Tara and I often talk about rewriting memories and maybe getting this news puts a new, happier anniversary on my calendar.

Today I went for my follow-up with Dr. H, my super fabulous reconstructive surgeon. As Cory pointed out to me today, I’ve been worrying about this visit for weeks. Even though I’d been told that the right one would heal differently due to the radiation, I wasn’t sure that the way it was healing differently was the right differently. I’ve thought over and over about friends who have had trouble with their implants – one who said it was like a baseball, another who just had it replaced for the third time – for a total of five surgeries in the last 11 months!

So as Dr. H inspected it with his normal dead-pan expression – he must be a great poker player – I mentioned nervously some of the things I’d observed, like some of the scarring being hard in places, and an end that just didn’t seem as healed as the rest, and I asked if it was healing normally or if it was worse. His response? “It’s healing abnormally well!” He explained that it’s actually better than he expected and really as good as we could hope for a radiated breast. Phew!

So then I asked the question I’ve been waiting to ask since the April 30, 2012, when I lost my breasts: “Can I make the appointment to get 3D nipple tattoos?” Dr. H smiled, nodded, and replied, “Yes, you certainly can.” Woo hoo!!! I also found out that I don’t need to go all the way to Maryland for them (although Vinnie appears to be the Michelangelo of areola tattoos and amongst the pioneers of 3D nipple tattoos). Dr. H recommended Juli Moon right down the road in Lynn, assured me he’s never heard anything but good things, and showed me her portfolio.

Needless to say, I called as soon as I got in the door, before I even got my coat off. I didn’t make the appointment yet as I need to check some things with my schedule, but it looks like in early May I will feel just that much more normal again…

And for some of my friends who are just in the beginning stages of this journey – recently diagnosed, just finished surgery, in chemo or radiation – it may feel like forever, but that will be over soon! You’ll be through treatment, your hair will grow back, you’ll regain your strength and so much of your life. It will be your new normal. And it will be wonderful, and you will be stronger for all you’ve been through! And this is all for you! I wouldn’t be on here talking about nipples if I didn’t think it would help answer some of your questions and ease your road ahead! xoxoxo

 

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So as I wrote these I thought how cliché and dippy some of them are. I erased them all and started over multiple times. But they kept reappearing on the screen. Because even if they are dippy and cliché, they are true. They are the things that I’ve finally learned and come to know as true, and they help me every day in my quest for a happy life…

21. Do what makes you happy. Not because someone told you to. Not because it will make you money. Just do something because you love it. If you’re passionate about something, everything else will follow.

22. Happiness is contagious. It’s hard not to smile back. Make someone else smile today. It’ll make you happy. It’s a fabulous circle!

23. You know what else can make you happy? Running. I never would’ve believed it, but once I tried it, I found it’s true. That whole endorphin thing, I guess. I actually always think I hate running when I start out, but once I get going my mood totally improves, and after I always feel better than when I started.

24. Music. Another thing that can totally change your mood. (And why is it that you can always remember the words to songs, even (especially) the ones you can’t stand???)

25. Travel. Explore. Discover. Whether it’s by the Mediterranean Sea, the streets of San Francisco or the mountains of New Hampshire, you’ll find new aspects of you along the way.

26. Be yourself. Don’t try to be anyone else. You’ll never succeed and it’s not worth your time or energy. Love yourself as you are. But…

27. Know that if you are not happy with yourself, you are the one person who can change things. You have control over you. Don’t waste your time being miserable.

28. And don’t waste your time with people who don’t treat you the way you deserve to be treated. If they make you cry more than smile, it’s a clue that you should get out. (It took me way too long to realize that one. Please trust me on this one and if that sounds like your relationship, get out now!)

29. In fact, don’t waste any time. Your time. Other people’s time. Nothing is more precious.

30. Guilt is a wasted emotion. If you feel guilty, do something about it. Change it. Or get over it.

31. Your parents probably do know best. And they will always worry about you, know matter how old you are. And when you become a parent, the worry will never end. It just comes with the job.

32.  Every day is another chance to start something new. Or start over. It can be whatever you want it to be.

33. Don’t let anyone else put you down, discourage you or tell you that you can’t do or be something. Usually they are the ones with the issue.

34. Encourage others. Boost them up. Help them find their way and thrive. It takes nothing away from you – you both win.

35. Spend time talking with your elders. Learn their stories. They are your stories, too, and they’ll be lost if you don’t listen… and spend time with the younger people in your lives, too. They can benefit from your experiences, and you can learn a lot from them, too – like how to relax and play! (Something I’m always trying to learn – the relax part…)

36. Learn the art of compromise. I’m trying. It’s something I’m still learning, but what I do know is that you can’t have everything your way all the time. And that’s ok.

37. Everything happens for a reason. We may not always understand it, but the reason usually becomes clear later on. (I’ve often thought that maybe the reason I got cancer was to help raise awareness and save others. So do your self checks people!!!)

38. Say thank you. Be grateful. Appreciate everyone who is there for you, helps you, loves you. Thank you are two words you can never say too much.

39. Pray. No matter where you are, what time it is or what’s happening around you, you can pray. It’s one thing that always helps make me feel better. And the other…

40. Deep breaths. Breathe. Just breathe.

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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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At least once every couple of weeks, another person tells me a friend or family member was just diagnosed with cancer. And it’s often breast cancer. I honestly had no idea how common it was until I entered the cancer world nearly two years ago. I now know so many (mostly) women who are all at different stages of their cancer journey. I have one message for every single one of you, no matter what stage of treatment you’re at now: you will get through this!

Treatment will end – and, honestly, that will be one of the hardest parts. But you will move on. You will get your hair back – on your head, your eyelashes, your eyebrows, all of it. You will get (if applicable and you choose) new boobs. You will stop feeling so tired. You will start remembering things again. Your head will clear. The tingling will go away. Your visits to the hospital – your home away from home for so long – will grow further and further apart.

People will no longer be able to tell by looking at you that you had cancer. In fact, many will forget you had cancer. You will never be able to forget, but you will stop thinking about cancer constantly. You will go a full hour without thinking about it, then a few hours, and then even a full day! (I haven’t gone longer than that yet, but expect eventually I’ll even go a week or more without thinking about it – at least I hope!) Your life will resume a new type of normal, which, if you want it to, can at least resemble your old normal.

For my friends just starting their journey, considering their options and deciding their route: it may seem like forever, but honestly, one day (maybe about two years from now) you will be looking back, amazed at how much has happened in such a short amount of time – and happily moving on with your life…

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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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