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Archive for the ‘connections’ Category

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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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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Running for Rare Diseases

Posted in Boston, connections, Fundraising, work, tagged , , , on March 1, 2013| Leave a Comment »

Today was Rare Disease Day around the world. It’s a day about raising awareness of all the approximately 7,000 rare diseases that affect nearly 30 million Americans. What is considered a rare disease? In the U.S., any disease affecting fewer than 200,000 people is considered rare. And because they are so rare, even many doctors don’t know much about them, and therefore many people are misdiagnosed – and therefore mistreated – for years. Learn more by visiting www.rarediseaseday.us or by watching this video. Or for a very personal account, visit my friend Monique’s blog about her experiences with Pompe Disease.

I met Monique during my very first month working at Genzyme, two years ago. She visited to share her story with employees, and we were all so impressed with her energy and determination for advocating for people with Pompe. And she made us realize how important what we do every day is to our patients. Genzyme is a very special company. It’s been developing and making therapies for rare diseases for more than 30 years now. For many people, their disease would have no treatment if it wasn’t for Genzyme.

What really makes the company is its people – and there’s a special group there who take the patient connection to the next level: the Genzyme Boston Marathon Team. The team has grown from a small grassroots effort by a few Allston employees to now an international team with 17 runners. Still completely employee driven, the team has increased not only its runners, but its ties with the patient community through an increased partnership with the National Organization for Rare Disorders (NORD) and by pairing each runner with their own patient partner. Great, lasting relationships are built out of these partnerships. Something that just doesn’t happen at other companies with their customers.

A major part of the team’s focus is raising money for NORD, through various fundraisers. They are always FUN fundraisers, and ’tis the season right now! And they are open to everyone, so join us whenever you can! I will post various ones as they come up – particularly watch for the fabulous online silent auction in late March. Here are a few:

  • Jessi’s VIP Beer Tasting Event – “The word on the street is that the brand new Harpoon Beer Hall is a wicked awesome place to have a good time. You are invited to a private, narrated beer tasting at a VIP room in Boston’s finest brewery. Harpoon Brewery 306 Northern Avenue, Boston, MA 02210 Wednesday, March 6 … 7:30 p.m. – 9 p.m. Not only is this the most fun you’ll have on a Wednesday night all year, but you’ll be supporting a good cause – the National Organization for Rare Disorders (NORD). Reserve your spot on the guest list today by donating $20 directly to Jessi’s FirstGiving page (http://www.firstgiving.com/fundraiser/jessicacolund/bostonmarathon2013). All proceeds will benefit the National Organization for Rare Disorders (NORD) and my epic Boston Marathon adventure.”
  • Andrew’s Bowling for Rare Disorders – “I am hosting a bowling fundraiser at Jillian’s Boston to support the National Organization for Rare Disorders (NORD). You will get two hours of free bowling, tasty appetizers and a raffle ticket.  We will also have some great raffle prizes including gift certificates to local restaurants. Please come to learn more about NORD, meet new friends and socialize while supporting a great cause. For the 5th year in a row I will be running in the Boston Marathon raising awareness about rare disorders and running on… behalf of Kristin, who has a rare disease called Cowden’s Syndrome. Jillian’s Boston 145 Ipswich Street Boston, MA 02215 Reserve your spot on the guest list today by donating $25 directly to my First Giving Page – http://www.firstgiving.com/fundraiser/andrew-scholte/bostonmarathon2013“
  • Kai, Jen and Colleen’s Raise a Glass for Rare Diseases “March 16th at the Sherborn Inn in Sherborn, MA.  We have collected some pretty great silent auction items that we’re excited to share with you.  You’ll have a chance to bid on Sox/Yankees tickets, a baseball autographed by Red Sox closer Andrew Bailey, a beautiful canvas photo from photographer John Fischer, a massage from MacMed Spa, a basket of designer hair products from the Anthony Fredrick Salon, tickets to a taping of Late Night with Jimmy Fallon, a $100 gift card to J. White Automotive, and much more!  Plus all guests will receive a gift bag containing items from NORD, Genzyme, and some of our wonderful sponsors.  There will also be wine tasting from 6-8pm, and some great appetizers.Tickets are $35 each. ” If you’d like to purchase tickets, please go to any of their FirstGiving pages: http://www.firstgiving.com/fundraiser/colleendalton-petillo/bostonmarathon2013 , http://www.firstgiving.com/fundraiser/kailenesimon/bostonmarathon2013 or http://www.firstgiving.com/fundraiser/jentedstone/bostonmarathon2013.

Not able to attend a fundraiser? There are plenty of other ways to support the team:

And no, I will not be running a marathon any time soon! I am part of the Genzyme Running Club, and finally signed up for what I am praying will be my first 5k back (don’t want to jinx it): the BAA 5k on the day BEFORE the Boston Marathon. I am just a very big cheerleader for the team and love supporting them by helping with fundraisers and any other ways possible. They inspire me, as do their patient partners. They are a fabulous example of living the Rare Disease Day motto: “Alone we are rare. Together we are strong.”

So yes, back to Rare Disease Day! It was a great day, marked by our second annual relay race, and this time went international, with a virtual handoff from Ireland to Framingham. Folks then ran in multiple legs, 26 miles in total, from Framingham to Cambridge. The last leg was also the biggest, with more than one hundred people running from our Allston facility to Genzyme Center. It was awesome to cheer the employees, lead by a visiting patient, who spoke with employees before joining the relay, as they set out to complete the relay and raise awareness of rare diseases. The spirit of the original core Marathon Team has reverberated throughout the company, and is really building our rare disease community, as more and more people are, quite literally, running for rare diseases!

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