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Guest Blog: What a Difference a Year Makes

Posted in Boston, Cancer, chemotherapy, Dreams, family, Planning, radiation, recovery, work, tagged , , , , , , , , , , , , , on April 30, 2013| Leave a Comment »

The following is a guest blog written by my dear cousin Tara, because she knew I just couldn’t tonight. Thank you, T…

A year ago, exactly, Amy asked me to guest blog on AmysAmerica.com. She asked me to write for her the day that she had her surgery, knowing she wouldn’t be up to it that night. I felt a wash of things. Honored she would ask me to write here, a place where she shares her own thoughts, advises, and inspires so many people. Terrified, that something would go wrong in surgery, that it would be worse than we feared. Angry, that at 38 and 39, somehow our lives had taken this unbelievably wrong turn and the girls that grew up pretending to be happy, secure (wealthy… famous…fabulous) adults, found ourselves a little off course, a little scared, and facing challenges we wouldn’t have even known to imagine.

Well, we did it. You did it, Amy. You not only survived the year – a LONG year of surgery and treatments – you did it with courage, with style, with grace, and not just a little tenacity and fervor. 

I woke up and texted Amy this morning: That no matter what happened today, it had to be better than last year. And then, finally, a new month, new us, the more organized, more empowered, don’t f*** with us versions. 

And we laughed. 

And tonight when she texted on her way home from a long day at work, to go home to do more work, to get up to get in early for another long day tomorrow (Because that’s what she does. Well. And loves it), I offered to write again. Not, at the time, realizing that it had been exactly a year ago that I did so. And it just felt right. Because that’s what you do for the people you love, right? You step in, you take a little something off their full plate, anything to share the burden. 

A few weeks ago, I ran the marathon (almost). And I had a bunch of amazing family and friends either there in person or in spirit. And in frustration, adrenaline, and maybe some post-run dopamine influence, I signed up to run the NJ marathon this weekend. I just did it. And when I told Amy, she didn’t ask why, she didn’t tell me I was crazy, she simply asked “want me to book the hotel room?” And I cried (because I’m still pretty emotional over the whole marathon disaster) and texted back “really??? you want to come to NJ” and she wrote “(rolling my eyes) do you really think I’d let you finish your first marathon without being there?” (yeah, I’m crying now, too.)

I guess my long-winded, one year out, post surgery anniversary blog point is this. Things happen every day that we couldn’t have imagined a year before, a day before, an hour before, even. Terrible, horrific things, beautiful, mind-blowing, life-affirming things. We just don’t know. And that’s a lot of chaos and uncertainty. But with luck, you find a few people to ride the crazy roller coaster with and make the best of the worst and better of the best times with. I count myself incredibly fortunate to have some of the best. You at the forefront, Amy Lee. 

I am so very, deeply, to the core, thankful that this chapter is ending. That a new one starts now, that every day you remind me to take the lessons from the past and then file it away, plan for the remarkable things we have yet to achieve, but live in the present and be thankful in this moment.  

Here’s to May 1.

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Crazy for a Cause

Posted in Boston, Cancer, chemotherapy, connections, Fundraising, recovery, work, tagged , , , , , , , , , , on April 29, 2013| Leave a Comment »

“I have to say you are the most active person I’ve ever met. You are exhausting just to follow on facebook.” Seeing that post from my cousin’s husband on my facebook wall when I woke up this morning completely cracked me up. “Ha ha ha – yes, I exhaust myself much of the time, too…” And this weekend was really a prime example of it:

  • Friday night’s fundraiser for One Fund Boston was AWESOME! We raised $3,175 for the One Fund – and Genzyme will add to that through our GIVE program. Not bad for just starting on Tuesday with Andrew IMing me saying “So do you think Friday’s too soon for a fundraiser?” So glad we did it! Thank you to everyone who helped, Nick for helping Andrew and me at the door, everyone who joined us, bought raffle tickets, donated raffle items – and Towne for donating the space and delicious appetizers. Such a wonderful venue! If you haven’t been, you need to check it out. Great people as well as fab food.

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  • Several of us went from Towne to Legal’s for a late dinner – and then I had a presentation to finish for work so there wasn’t much sleep before…
  • I had to be up early to attend Dana-Farber’s Second Annual Summit on Fundraising at the Copley Marriott. The initial panel with Dana-Farber doctors and staff was surprisingly difficult. Hearing the facts and statistics about cancer – even the positive ones on the progress being made – just really hit home. As Lisa Scherber, the Director of Patient and Family Programs, spoke about helping girls with cancer see that they are still beautiful, tears welled in my eyes. “Not sure I’m strong enough to be here,” I texted Tara. But I took some deep breaths, dabbed my eyes and tried to focus on WHY I was there – to get new fundraising ideas to help make a difference in people’s lives who really need it.  So I attended three other sessions: Fundraising 101; Social Media and Online Resources; and How to Secure a Sponsorship. I learned at least one new thing in each session, and they inspired other ideas that are now swirling around in my head. I texted Heather about our Jimmy Fund Marathon Walk Team and we are both so excited to kick it off – more info coming soon!!! (And please let me know if you want to join our team – Sept. 8, the Boston Marathon route, Hopkinton to Copley, although you can walk shorter 10, 5 or 3 mile routes.) One of the highlights of the day was running into a woman I met at the Young Adult Cancer Conference a few weeks ago. She lives nearby and we’re going to meet up soon. Of course the way we ran into each other – as we were evacuating Copley due to fire alarms – wasn’t fun, but at least they let us back in the building, told us it was a false alarm with the sprinklers, and were able to continue the seminar…
  • And then I had to run home and get ready for the Passport to Belonging event at the West End House Boys and Girls Club in Allston. Genzyme was a major sponsor of the event, so I was part of the event planning committee and have really been looking forward to the evening for months. I was joined at the dinner by several colleagues and friends, many for whom it was their first visit to the West End House. All were impressed with the facility, which is such an incredible place for kids of all ages in the community. I was relieved I got there in time to still purchase some of the things they made in the art studio and the kitchen, but next year I’m going earlier to make sure I get to see everything! At least we were there for the full program: Peter Gammons, the award-winning sportswriter, was there as he is the mentor of one of the students who was honored, and he interviewed both students on stage, really letting them tell their stories in such a great format; then there was a fun live ask and auction (I want to host an auction just so I can hire that auctioneer – she was a hoot!); and then we danced the night away to the Anthony Steele Band. No one could match Vanessa’s moves, but we all had fun trying! 528410_10201006189144049_738326541_n
  • Today it was hard to wake up – but I did, as I got to have lunch with Tina and my three beautiful Goddaughters. It’s only been a little while since I last saw them, yet somehow they grew so much!!! After lunch Allegra and I went shopping for her shoes and accessories for her upcoming Best Buddies prom. We had a great time, and now she’s all set! Can’t wait to see the pictures…

So yes, I may be crazy busy much of the time – and yes, I will try to get more sleep, Dad – but at least I’m crazy for a cause. Several of them, actually… so it’s more than worth it! Just wish there were a few more hours in each day, or another day in the week…

 

 

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The Curse is Broken!

Posted in Boston, Cancer, chemotherapy, connections, Decisions, Fundraising, Home, Planning, radiation, recovery, Uncategorized, work, tagged , , , , , , , , , , , , , on April 14, 2013| 12 Comments »

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This morning I ran the BAA 5K. For those not familiar with it, it is 3.1 miles along Newbury St., Commonwealth Ave., and starts and finishes on Boylston St., by the Boston Public Library. In fact, it ends at the finish line for the Boston Marathon, which happens to be tomorrow. While the Marathon has been consuming much of my time – helping our Genzyme Boston Marathon Team with events and fundraising for NORD – the 5K has been looming in my mind.

As many of you know, I only started running in October 2011. I always swore I’d never run. I was the non-athlete who thought she was going to die when they demanded we all run a mile in school. But inspired by both our Genzyme Running Team and my cousin Tara, I ran my first 5K in December 2011 – the very fun but very cold Jingle Bell Run – and participated in Genzyme’s first Rare Disease Day Relay (last three miles) on February 29, 2012. Then, of course, I was diagnosed with Breast Cancer in March 2012 and with the ensuing surgery, treatments and side effects, the running pretty much stopped.

I tried numerous times to get started again – and each time I did, something happened like:

  • I was signed up for the Newport Half Marathon in October, then found out I needed more chemo, so that was out.
  • I signed up for the Jingle Bell Run in December, thinking that was a good way to start over (repeating my first race), then found out I needed radiation.
  • I signed up for the second Rare Disease Day in February, and then got sick just before.

So it was declared that it must be the lingering effects of the 2011/2012 hell year combo and I was cursed. I simply couldn’t sign up for any more races until I successfully ran one again – and luckily I had signed up for the BAA 5K before that third bullet, so we were just holding our breath that nothing would happen before it…

Th BAA 5K is significant to me for multiple reasons:

  • This was the first race I saw Tara run, in April 2011. I took her kids to cheer her on and watch her cross the finish line. I was so proud of her, and it never even occurred to me that I could do the same thing – 3.1 miles seemed like forever! And at that point I hadn’t quite made the connection yet that if I ran, I could eat and still lose weight, so I was still swearing off running.
  • I’ve been supporting our Boston Marathon Team since I joined Genzyme and they are such a fabulous group of compassionate, committed people. While I have no desire to ever run the Marathon (sorry Phil), I love the idea of doing something that ties so closely to the team.
  • It’s one of my favorite courses – it’s basically home. Since it’s right between my last apartment in Beacon Hill and my current apartment in Brookline, it’s one of my main running paths, especially at night. When I first started out, I mainly ran along the Charles River, along the esplanade, but then some runners were attacked there, so I started running up and down Boylston, Newbury and Commonwealth – all busy streets with wide sidewalks – if I was going out after dark. And there’s nothing like window shopping and people watching to make a run fly by!

It’s been harder getting back into running than I thought it would be. I think that’s in part due to the season and the cold – I am always so much more motivated to run when it’s nice out. Lucky for me, spring is now here: the Swan Boats returned to the Public Garden on Saturday, so now it has to be nice!

And the last few weeks I’ve been having shin pain, which I’ve never had before, and have really just been slugging along- much more walking than running… but I was determined, no matter what my pace or if it hurt a bit, to do this race.

And I did (even remembered to wear my compression sleeve), with such an incredible group of supporters: Tara (who in just three years has graduated to running her first Boston Marathon tomorrow!), and some of my Genzyme Marathon Team family: Jessi, Colleen, Kyle, Andrew, Sean and James – and Cian and David from Ireland not only cheered me on, but ran, too! I look forward to cheering you all on at the Marathon tomorrow!  And Nick and Shay even joined us for a celebratory brunch (complete with mimosas for a few of us…) after the race. Thank you all so much for being there for me – it meant more than you know!!!

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So now the curse has been lifted, and I am mulling a new goal: Disney Princess Half Marathon in Walt Disney World in February. (If it wasn’t the end of kid’s February vacation, I would definitely do it – but must weigh pros and cons before committing.) In the meantime, I’m going to sign up for a few more 5Ks…

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