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Posts Tagged ‘Boston’

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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Wigs Away!

Posted in Boston, Cancer, chemotherapy, Dating, Decisions, hair, recovery, tagged , , , , , , , , , on February 4, 2013| 6 Comments »

I put my wigs away this weekend. That statement may surprise those of you who see me nearly every day and haven’t seen a wig on my head in months. I made the unconscious decision to stop wearing the wigs long before a real hair started to grow back on my head. And then it was a conscious one, when I was at the really awkward stage with just a few scattered tufts of hair and many bald spots – a defiant, I-don’t-care-what-I-look-like-and-screw-you-if-you-don’t-like-me-for-it kind of attitude (much tougher than I really felt inside). And finally, I didn’t need them as – sighs of relief – the follicles began to sprout faster, and the bald spots filled in. But I couldn’t bring myself to rid my room of the ever-present long (and short) hair perched on my shelf. Until now.

I only once in the last couple of months considered putting one of the wigs back on my head. I was going out for a night on the town and really wanted to flirt. And believe me when I say I have done my research and nothing tops having long hair when you want to attract attention. (Ok, maybe a few things, but that’s not the kind of attention I was looking for!) Men will overlook a lot of other flaws if you have beautiful, long hair. But my pride won out and I went with my own boy-like hair. Yes there was a tad bit of flirting, but I was flung back to reality when the guy was staring at the picture on my phone (he didn’t believe I had a 21-year-old son, so I showed him the picture of Nick with me in the red dress from last January) and he said “Wow, you’re beautiful!” But not looking at the me in front of him, looking at the pre-cancer me (with long, brown hair) from one year ago. Forget strikes one and two – that will count as three and you – are – out!

I had a lot of fun with my wigs in the beginning. They helped me get comfortable with the new me. Made me feel a bit better when I looked in the mirror. Helped me poke fun at the stupid thing called cancer. And I want to donate them to help other women do the same. But just not yet. I did loan a couple of them to a friend who is going through treatments now. But the others, now in a hatbox in my room, are almost a security blanket. I need a step process for this. First, out of sight but accessible. They are there if I need them, if suddenly I wake up, and all my hair is on my pillow, again. Not that it’s likely I’d put one on, even then, but I’d have options. And hopefully in the next few weeks, I will forget they are there. I will be secure that the hair on my head is here to stay. And one day, maybe in a couple of months, I will stumble across them and want the storage space for something else – like barrettes and headbands and elastics for my growing locks. And then I can find someone to pass them on to, who is at the start of her cancer journey and needs those wigs to boost her confidence and mood – to be her security blanket – as I let go.

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An end – and a beginning

Posted in Boston, Cancer, chemotherapy, Decisions, family, hair, prayer, radiation, recovery, work, tagged , , , , , , , , , , , , , , , on January 15, 2013| 8 Comments »

Sometimes you just can’t explain it. I should be thrilled. I should be excited. I should be beaming from ear to ear. Instead, as I left Dana-Farber this morning, I just cried my eyes out.

Strangely enough, I felt just fine going in. It has become such a part of my daily routine. I wake up at 6:15, have a little something to eat and then shower. I don’t put any lotions or deodorant on because I’m going straight to radiation. I get dressed for work except bring my bra and necklace in my bag because I know I’m going to have to take them off as soon as I get to Dana-Farber, so what’s the point of putting them on? I walk out my door by 7:20 and pull into the Yawkey Center garage by 7:35. As a radiation oncology patient (who they know is normally in and out), I get to park myself in the valet area. I say hello to all the valets, go down a floor to P2, and walk through the very cool gene display. I say hello to the folks at the radiation oncology desk, scan my pink card to check myself in and head on in to change. I quickly swap my jacket and shirt for to hospital gowns: the first open in the back and then one over it open in the front, like a bath robe. I stash my stuff in a locker and typically by the time I close it, I’m called in.

The very friendly staff make small talk as I leave the top robe on a chair and go to the center of the room to lie down on the small metal table, covered in a white sheet. (Picture Frankenstein.) I slip my right arm out of the gown and pull it down to expose my right breast. A round pillow is put under my knees and I raise my hands back above my head, but with a slight bend at the elbows. I shift my chin up and angle my head to the left. I become dead weight then. There are people on either side of me chatting away, as they use the six tiny tattoos on my chest to align me exactly with the machine. They tug the sheet if they need to move me or push my body, but I am not to do anything. I freeze from that moment on. Once they have me where they want me, they leave me alone in the room with the music and the machine. Today it was soothing soft rock, love songs – I think because it was all women. It can be anything from classic rock to Michael Buble. One day, I left singing songs from Grease, the musical.

Along with the music of the moment, the giant machine whirs to life. Typically it will start on my left side so I have a perfect view of my right breast and the red beams in the reflection. For the first 10 or 15 appointments, I pretty much kept my eyes closed the entire time. Heck, it was embarrassing lying completely exposed on a hard table with your arms raised over your head, your scarred fake breast the center of attention and your muffin top pouring out over the top of your pants or skirt – especially with young, cute men on staff. And add to it that you’re not allowed to move at all the entire time. I was so nervous at first that I would have a jerk reaction – or that I wouldn’t be able to lie still in that exact position long enough. My heart would start beating so fast, and my breathing got heavier, I was afraid even that would mess it up! But it soon became relaxing and I looked forward to those few minutes alone in the room, music playing, the humming machine and me.

Lots of people gave me different advice about what to think about while I laid there:

  • God healing me. I love that one, and would often at least start there.
  • Nothing – clear my mind. I tried really hard to do that. Never lasted long.
  • Focus on healing and forget work. Again, I really tried hard, but it was typically work that ruled my mind, even there.

What actually consumed my mind more and more each time was how to tell this story for others who will go through it. How to help make it easier for them. And how lucky I am.

Before I can think much more, the machine finishes its rotation, the whirring ends with a click, the doors open, and the friendly staff return. “All done – you can put your arms down now, Amy.” They lower the table, I cover myself back up, hop off, scurry to put the second robe back on and we wish each other good days. I go back to the changing area, finally put on my deodorant and then lotion up the now raw, red and even a bit blistering breast and underarm. I get dressed, touch-up my make-up, grab a bottle of water and wish the reception staff well. I go back to P1, pay my $5 to park (thank goodness it’s under an hour) and head off, typically arriving to work about 8:15.

Today was a tad different – I had to get Nick, so he could drive me to work and take the car. And of course today was the day that as I left the hospital, I had to hold back the tears. They flooded out as soon as I closed the car door in the garage. I hate crying in front of people so I had to get it all out before I got 10 minutes down the road to my apartment to get Nick.

So what the heck is with the tears? I guess tears of relief. To be done, and to be ok. I am so thankful to have made it through these last 10 months relatively easily. (Mainly thanks to my incredible support system – my strong family, loving friends and supportive work colleagues.) I know it could have been so much worse in so many ways. And the bottom line is I’m here and healthy and on the road to being me again.

Just writing that line makes me start crying. I know I’ll never be the same person I was. I know I will continually wonder in the back of my head if the cancer is going to suddenly appear elsewhere in my body. I know I will never look at my body the same. I know I will never again say I hate my hair, no matter what it looks like. I guess in a way, I’m still mourning the old me, who disappeared on April 30 when I had the double mastectomy. And just as I was getting used to being The Cancer Patient, really getting the hang of it, the biggest chapters (chemo and radiation) are ending.  I guess I feel a little lost and have to figure out who I am now. I want to be the old me but know that’s a lost cause. No use dwelling on the past, so I will now get to work on Amy version (almost) 39. The new, hopefully improved, healthier and happier version. Who has an extra hour back in her day now that radiation is over. I am going to put it to good use…

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