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Posts Tagged ‘family’

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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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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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.

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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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My friend Lisa had her first chemo session at Dana-Farber yesterday. I think I was more nervous for her than I was when I went through it! There was no need, though, as she is one of the bravest, most positive people I know. There is no way she’s going to let this stupid cancer mess with her and her fabulous family. Frankly, cancer chose the wrong woman when it entered her cells.

But because I was nervous, I wanted to make sure I passed all I learned through my experience on to Lisa. Not wanting to forget anything, I made a list (on a bright pink post-it note, of course):

Lisa

  • All different
  • Tired
  • Food tastes
  • Eating/weight
  • Eyelashes
  • American Cancer Society (Wig website/Look Good, Feel Better)
  • Wig fitting
  • Lymphedema (sleeve/massage)
  • Insurance
  • Nails
  • Super B vitamins
  • YOU

Pretty random, huh? That’s the thing – so many of the things that are a big deal in your cancer life, you’d never expect. And there is so much happening, so fast, so much to read and absorb, it’s hard to distill what you really need to know. So during lunch, I ran over to Dana-Farber to sit with Lisa and download what I found to be the most important, like…

  • The all important disclaimer that every single person is different. Everyone’s body reacts differently to things – while my arm would get cold while the poison traveled through the IV into my veins, it didn’t bother Lisa. While I loved having my girlfriends at every chemo session (kind of like Sex and the City / Hospital Episode), she may prefer to be alone or just with her family. I was really lucky and didn’t get as sick as I expected from the chemo, and hopefully Lisa will be the same, although I have friends who didn’t want to do anything but sleep through it.
  • You can’t anticipate if you’ll lose or gain weight. Right after my first chemo, my mouth got the metallic taste and I thought for sure I’d hate food and lose weight (yay!)… but of course that only lasted a couple of days, my taste buds returned and food was what made my nausea go away. So of course I gained more than 20 pounds. But you know what? It didn’t matter! My mantra was “whatever makes me feel better” – which included food and retail therapy. And yes, I’m still losing those last couple pounds and trying to pay the credit card bills, but heck it was worth it, because those things made me feel better.
  • Part of that retail therapy were my many wigs, which I passed on to Lisa yesterday – and encouraged her to let her children play with, to help them get used to the idea. She texted me last night that her youngest put on her Little Mermaid dress with the red wig – love it!!!
  • Along with the bald head, I reminded her that EVERY hair on her body will fall out – not just those on her head. I encouraged her to relish the time that she doesn’t have to shave, as it will be back before she knows it. And I also warned her of what was most traumatic for me: losing not my eyebrows but my eyelashes… I was so happy the day they started growing back!
  • Yes, the stupid cancer can do a number on your self-esteem, but it’s so great that there are programs out there like the American Cancer Society’s Look Good, Feel Better program that not only teaches you how to apply your makeup (including creating eyebrows after yours disappear), but gives you a fabulous bag of goodies! A must to take advantage of.

I could’ve gone on and on, but knew I could never tell her everything, and didn’t want to overwhelm her, especially during that first chemo session. (Luckily, Lisa is happily married, or I’d have had to give all my “single cancer girl” tips, too! 😉 ) Really, everyone who goes through it has a different experience, and all we can do is pass on our experiences, hope the tips help you not feel like you’re the only one going through this and reduce the surprise of things people didn’t warn you about. And that’s the number one thingto remember: it’s all about you.

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

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

With Nick and Tara, ringing in 2013.

With Nick and Tara, ringing in 2013.

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

Boston, February 9. 2013

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

Disney March 2013

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

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

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

One Fund fundraiser at Towne, April, 2013

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

BAA 10k, June 2013

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

IMG_1336 IMG_1902 IMG_2524 IMG_2534 heath aldeanIMG_3334

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

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

Best second date EVER!

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

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

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

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

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

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

xo

Amy

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