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Archive for April, 2013

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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“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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Last week was emotionally exhausting (and physically exhausting for many, especially for those who started it by running – or trying to run – 26.2 miles). Friday’s intense manhunt for the Boston Marathon bombers, and the mandated lockdown throughout Boston and the surrounding communities, put us all on edge and paralyzed us at the same time. We all breathed a collective sigh of relief as the good guys finally won and captured the last of the bad guys (that we currently know of). And as it all came to a victorious end, as people clapped in the streets for all who do their best to keep us safe, I posted the following: “It just occurred to me why I am so bound and determined, so driven, loyal, passionate, proud and strong – because I’m from #Boston.”

You can’t help but be proud of the outpouring of support and kindness that has spread not only throughout the city or state, but literally throughout the world! I have heard from friends all over the globe about signs and runs and tributes to the people of Boston. It’s amazing, invigorating and inspiring. We all want to help those directly impacted. And luckily, the city and state joined together and created One Fund Boston to directly benefit the people most impacted by Monday’s horrific events.

One of the Genzyme Boston Marathon Team members asked me today if I thought it was too soon for a fundraiser, as he found a willing venue for this Friday night. Maybe, but maybe not – why not try? So this Friday night, April 26, Andrew and I are hosting a fundraiser from 6-8 p.m. at Towne Stove and Spirits at 900 Boylston St. Boston. They are just reopening, and we want to support them – and thank them for letting us have this in their upstairs bar for a few hours for this event. For a $10 donation, you will get admission and free appetizers (while they last), and a chance to buy raffle tickets for some fabulous prizes like:

  • Two tickets to see Kenny Chesney at Gillette Stadium on Friday, August 23, 2013
  • One night stay the the DoubleTree Boston
  • Restaurant gift certificates
  • And more!

I hope you can join us, even if just for a quick hello, hug and a drink, before you head out for the night. 100% of what we raise will go to One Fund Boston. We can make a difference. We can help. We are Boston Strong.

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My heart is broken for so many people. Those who were killed, those who were injured, and all who know and love them. And – albeit on a different level – for those who, like my cousin Tara, and several of my friends on our Marathon Team, were about to complete their first marathon when all hell broke loose.

Many people will have their stories of where they were when it happened, and this is mine. It was one of the scariest times of my life, and I know I’m still in shock because I haven’t really broken down yet…

I was there, in the heart of it. In fact, had Gail, the friend I was with, not had to go to the bathroom, we may not be here right now. You see, we were rushing from Mile 14 to the finish line, where we had VIP passes, including to the grandstand. I drove, with Gail, Derek from NORD, and David and Doug, our photographers, and the closest parking I could think of was at the Prudential Center.  There was a bit of a back-up getting in, and we wanted to capture as many images as possible of our Marathon Team runners crossing the finish line, so I let David, Doug and Derek out of the car just before entering the garage; Gail said she’d stay and keep me company – thank goodness she did.

We found a parking spot pretty quick and were hurrying to get out onto Boylston St. so we could get over to the VIP area and see the rest of our runners finish – a few were getting close according to the text messages. But as we headed out of the Pru, Gail asked if we could take a detour and go to the ladies room first. So back we went and stood in line, waiting, got through it, and then were back on our way out to the street.

All of the sudden, we heard the boom, and knew instantly something bad happened. And then, as people all looked at each other and then started toward the windows to see what it could be, smoke appeared out the window. And then, everyone in front of us – seemingly hundreds of people – all turned toward us and started running and screaming “Run, run, run” – so we turned and ran for our lives. We locked arms to try to run together, scared that we’d be separated. All I could think of while I ran was that it must be gunmen; that someone first set a bomb, were armed, too, and they were coming into the Pru. So we ran as fast as we could, along with everyone else, cutting through the food court, pushing chairs and tables out of the way,  anything to get out the side doors and away from danger.

Only outside we went, and saw the smoke. And the screaming. And the police were not far behind, pushing us away from the finish line, and the stands, and then ambulances were in front of us, and runners were next to us. They were as confused as us and we were all trying to piece it all together… then we were being told we needed to completely evacuate the area, and we had to go toward Mass Ave. One cop looked at us and said, “I’m sorry, but we don’t know how many more are in this area, so we have to get you all out so you can be safe.” So we went.

And along the way we tried both to update our loved ones, as well as to check on our runners and friends in the stands. From where the ambulances were, and the smoke, it appeared that it was all on the actual course, so we were most concerned about the runners. I tried a few times to call my son, my parents, and our photographers, but couldn’t get a line out. Texts weren’t being reliable either – kept getting held up. Luckily, my blackberry e-mail was working. I immediately went into crisis mode, updating our senior leadership team, partnering with Lisa in Corp Comm to make sure all of our runners and onlookers at the finish line were safe. It took many emails, texts and phone calls from various people over a couple of hours – all the while being constantly pushed further away from the scene, and praying my iphone, portable charger and blackberry would hold their charges – but we were able to confirm all were ok. I was even able to stand on top of one of the cement pillars at the Mass Ave. underpass and actually see Phil, Andrew and Shane, which filled me with a bit of relief.

Once we knew all were safe, and learned our photographers were just about back to Allston, we decided to head to my apartment where my cousin and her family and friends were, and Gail could be picked up from there. Nearly the entire way, past Kenmore Square, by BU, there were police swarming the streets, and sirens constantly going. We stopped quickly at Sunset to hug Nick (he was working), and then walked the rest of the way home and collapsed.

It’s all just surreal. It was like a movie, not like it really happened. The evening has gone by in a blur. Once things started going through there were so many texts and voicemails – and I haven’t even seen facebook yet. In the middle of it all, when I knew the texting and calls weren’t working I did a mass post to my facebook, twitter and linked in accounts so all would know we were ok. I can’t even express how much I appreciated so many people checking on us…

Gail and I hugged many times as she left, both so thankful we had each other through it all. I can’t imagine going through all that alone.

After a quick bite to eat, I was told the Pru garage was open. So Tara and I took a drive down there and found out that is most certainly not true. The National Guard (Army guys) or police are blocking off all the surrounding streets. When we got to the corner by the Pru, we asked, and explained the garage people told us we could get it, they said absolutely not – they’re not even letting anyone walk on those streets, let alone drive on them. Maybe tomorrow.

Or, I guess, now looking at the clock, later today. So that is my story. I know there are things I left out, my mind is a jumble, and my heart is so very heavy… but I am above all else thankful to still be here, for diverting our path at just the right time, and that all we know are safe. And so devastated for those who are not as lucky…

 

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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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I’m Lucky

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I do not have a rare disease. I am lucky that what hit me last year is one of the most common diseases. It may suck, but people know what it is, doctors can easily identify it and there are numerous treatments available. People with rare diseases are not so lucky. Often just getting a diagnosis is a struggle, never mind finding a treatment. That’s why awareness is so important. And that’s one of the main goals of our Genzyme Boston Marathon Team – to raise awareness of rare diseases, as well as funds to support NORD, the National Organization for Rare Disorders.

Want to help? Bid on one of the very cool items on our online auction at www.runningforrarediseases.org – it ends on Friday, April 12, at noon, so you better hurry up! Not up for shopping right now? Put on some warrior paint, like Nick and I did above. Each of our Marathon Team members are paired with members of the rare disease community. Phil is running in honor of little Wylder James who battled Niemann Pick A disease, and his parents have started the Warrior Paint Campaign:

“To show Phil our love and support for his efforts, and to remind him our Warrior Wylder James will be with him in spirit every step of the way … we have come up with a Warrior Paint Campaign!!  The goal is to receive 1,000 photos of YOU in your WARRIOR paint by next Monday!! It’s simple.  Dabble a bit of Warrior Paint (aka. face paint, or sunscreen) onto your cheeks and the cheeks of those you love and send them our way.  Send to me at shannon@wyldernation.org or post to the WN FB Page at https://www.facebook.com/Wylderjames ”

So get out your makeup or whatever and share the warrior in you!

 

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It worked. My determination to look forward and focus on the future really did help to pull me out of my funk and get me back on track. But what I also realized was that I couldn’t keep (and I can hear certain people snorting at this even before the words hit the screen) burying myself in work and denying anything is different. So I decided to finally – one year later – face cancer.

Just after my last blog entry called Facing Forward, I was on Dana-Farber’s website and found that a new session was starting called – ironically – Facing Forward After Breast Cancer Treatment. As you’ve probably figured out, while I love talking to people about their problems and helping them figure everything out, I’m not the biggest fan about talking to others about my feelings, especially if it could bring tears. But I realized that if I’m ever really going to move forward, this could really help. So I went.

It was the first time I’ve ever been in a room where the vast majority of women had hair practically the same inch or so length as mine – made me smile! As did hearing why these sessions were created: “Life as you know it is changed. You’re vulnerable. You’ve lost some control. You have a sense of time being limited.” Yup, yup, yup, yup. “During treatment you’re busy, focused on fighting.  Then it all stops. The transition can be very difficult. People assume since you’re done with treatment you should be ready to move on. And you feel guilty for not being there yet.” Exactly. Clearly I was in the right place.

It was explained to us that this is a “psycho education group.” So not a straight support group exactly, but a combo with expert speakers, the first being a medical oncologist. You would think after all the time I’ve spent with doctors during the last year that I would know it all – but I learned several new things – and felt good that I was able to answer some questions for others and help them, too. Some of what surprised me, I think I have heard before but probably just didn’t want to believe – or hoped that I’d be the exception. Not seeming so… As many of you know, I’ve been frustrated because I’m not back to where I was running-wise. Well, one thing I learned was that fatigue typically lasts about two years after treatment. Two years!!! So I guess my slow three miles (more walking than running), three months our of treatment, is better than nothing. You know what else can last two years? The neuropathy – the numb tingling feeling in my fingers and feet. I’m so sick of that – but guess it may be around a while longer…

But I’m here. And I’m basically healthy. And I have the best friends and family in the world. And I love my job. So I’m happy. And thankful. And I’m on the right track.

So I didn’t stop there. On Saturday, I took another step: I went to the Young Adult Cancer Conference at Dana-Farber. And I was really glad I did. More than the sessions, it was meeting other people around my age who have faced (or are facing) cancer, that made it such a worthwhile day. Everyone has a story, and they are all so compelling, no matter how straight forward they are. Kicking off the day was Mike Lang, a cancer survivor who, with his wife Bonnie, has completely transformed his life to help others facing cancer by taking them on adventures through Survive and Thrive Expeditions, as well as helping them tell their stories through movies, like Wrong Way to Hope. He shared his amazing story and clips from his latest venture: Valleys, which you can watch on Huff Post – Generation Why. Try to watch any of his work without shedding a tear – I dare you! It is so raw and true – we can all relate. What I really love is his motto: Reflect. Refocus. Rebuild. Live. Yup – that is exactly what I am doing!

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