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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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I’m Lucky

Posted in Boston, Fundraising, work, tagged , , , on April 11, 2013| 1 Comment »

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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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Facing Cancer

Posted in Boston, Cancer, chemotherapy, connections, Denial, Discovery, family, hair, Planning, recovery, tagged , , , , , , , , , , , , , , on April 10, 2013| 2 Comments »

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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