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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!

I thought I could get away from cancer. I thought by ending the blog, I wouldn’t think about it every day. Ha! Once you’ve been diagnosed, it doesn’t matter that you’ve finished chemo, radiation, multiple surgeries and been declared “cancer free.” It is always there. With every strange feeling, with each routine health screening, with every glimpse of myself with hair! And now, as many of you know, cancer is my ‘day job,’ too. I wondered if working for an oncology organization would be difficult or depressing, but it’s really the opposite: it energizes me and gives me hope that we can really find a cure (or, realistically, multiple cures)!

If you read my last blog entry, you know that my heart broke over the recent death of a breast cancer sister. This must stop! Help us create happy endings by funding the research needed to find better treatments and cures for all cancers. There are many ways you can help:

Join our fabulous team!!!

Join our fabulous team!!!

  • If you live too far away, are busy that day or just prefer to donate rather than walk, while we will miss your company, we would so appreciate any donation. You can donate by clicking here – and please don’t forget to complete your company’s matching gift request, if applicable!
  • Do you need anything for your kitchen? Shop one of our fundraisers and not only can you get what you need, but a portion of the proceeds will go toward our walk!
  • Have an idea for a fundraiser that can be done by Sept. 21? Please e-mail me and let’s talk!
  • Finally, another of my very favorite events of the year is coming up: Runway for Recovery! Join us on October 16 at the Revere Hotel for my (I never thought I’d say this) modeling debut! Buy tickets here, come cheer me and the other survivor models on, and you will be helping children who have lost their mothers to breast cancer, as well as providing opportunities for health care providers who care for such patients. It’s such an inspiring night – a true celebration of life, sisterhood and survivors.
Last year, I volunteered with Genzyme friends for Runway for Recovery - and excited to be modeling this year!

Last year, I volunteered with Genzyme friends for Runway for Recovery – and I’m excited to be modeling this year!

Please remember, together we really can make a difference and help find a cure! Thank you for helping us kick cancer!!!

Not All Happy Endings

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…

 

The End… for Now

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.

Today is my check-up with my oncologist. Driving here – the whole two miles – I was biting my nails (sorry mom) and tense, and of course what comes on the radio? Tim McGraw’s Live Like You Were Dying. I’m already on the verge of tears with the anniversary of the Boston Marathon bombing, I really don’t need this, too. Not sure why I didn’t make the connection when I confirmed the appointment…

Nonetheless, I’m here now. I’ll be able to tell Dr. M about all my aches, pains, side effects and symptoms, all of which are constant dull voices in the back of my head, saying, “it’s back…” I know I’m crazy, I know most of its nothing, and I know the simple blood tests and physical that are being done today will not be able to tell if a secondary or other cancer is lurking within me. No full body scans or other tests to say for sure I am cancer free. I know that is for my own good, with all the false positives and questionable images. And I know that even after talking to Dr. M the voices will linger. But I also know I will feel a bit better having shared all my worries and hearing her tell me not to worry.

I guess one cancer makes you an instant lifetime hypochondriac.

20140415-084032.jpg

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

 

I was always taught if you don’t have anything good to say, don’t say anything at all. I also really hate to bad mouth a company, especially one that has a strong charitable giving arm. But this has been bothering me for weeks and I’m sick of it. And I think you need to speak out when you truly believe something is wrong.

Nearly every day while driving my very short route to work I hear the same commercial: Avon’s Walk for Breast Cancer. And it makes me want to scream. In fact, when I hear the ending, I sometimes do scream back at the radio. (Yup, people probably think I’m crazy – or that I’m on blue tooth.) I’m sure you’ve heard it. Because it’s on so often, it’s possible you just tune it out and haven’t really listened to what they’re saying. Well, let me share: the last line is “Will you walk, or will you walk away?”

That’s when my blood boils. How DARE Avon accuse people of turning their head from breast cancer just because they don’t sign up for their walk??? I think their walk is great, I am glad they do it, I simply choose not to participate because I only want to do one major thing per year where I beg people for financial support – I don’t think it’s fair to solicit your friends year-round. And I choose to do the Jimmy Fund Boston Marathon Walk for a million reasons including the fact that Dana-Farber provide me and my friends such fabulous care and that the money supports multiple types of cancer research and treatment. And especially because it was one of my dear friend’s ideas to have a team.

So I think it’s great that Avon has their walk and does so much for breast cancer. But don’t use guilt advertising! I don’t go for guilt in religion, in life or in advertising. In fact, it makes me want to do the opposite; it completely turns me off. So do as you do in the TV version, Avon. Leave that line off your radio commercials. It’s not helping your cause, which happens to be one of mine, even if I don’t do your walk.

 

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