Archive for March, 2013

I haven’t posted in a while for several reasons: We were away; I was sick, including while we were in Florida; it’s been crazy busy at work both before I left and since I got back. But I guess the real reason is I haven’t known what to say. Or I should say, I don’t like what I’ve been feeling and hate being negative.

I’ve been having a really hard time with this anniversary. Last Thursday was one year from the day I found the first lump, and this Wednesday is the anniversary of the diagnosis. And I have just been living with this heavy dread, constantly fighting off tears, and in this just dark place. I hate to be that way. I slept till noon yesterday, and only woke up because Nick kissed my forehead to tell me he had great deli sandwiches in the living room. So I moved to the couch, had a few bites, and vegged back out. The only reason I got up at all was because we had a Running for Rare Diseases fundraiser and I try to never miss those. So I rallied for a few hours, but then went home and crashed again.

I woke up in the same funk. It’s been like living that time over and over – only this time it’s actually been worse, because I know the outcome. Last year I was out drinking and having a merry time with my cousin on St. Patrick’s Day, not thinking that the biopsy would actually come back cancer. This year I moped around the apartment. Let me tell you, the emotional scars are so much worse than the physical ones… I’m dwelling and I despise that. So I’m done. I can’t do this until Wednesday or I’ll go crazy.

So what? So what if it’s the anniversary? So what if it was a hell year? So what if my life is completely different? So what if it will never really be over? What is crying over it actually going to do? Nothing. I have to stop thinking about the past and focus on the future. Or at least start living in the present again. I may not really like everything about my current reality, but at least I’m here. I lived through it. I made it through surgery and chemo and radiation. And I’m recovering. My hair is growing back – strangers no longer see me and know I had cancer. In a few months I can have my implant surgery. Eventually I’ll feel like a normal girl again.

It could be so much worse. I am lucky. I know that. Blessed. And I am thankful, so thankful… Speaking of thankful, thanks to all who joined me in Florida last week – even those I only got to see for a few minutes! Nick, Tara, Kevin, Mike, Steve, Kelli, Hudson, Holden, Shannon, Jack, Julian, Janie, Monique, Dad, Maggie, Mom, Mark, Jake and Kacie (and congratulations on your engagement!!!)… it really was a great, relaxing time. And now I’ve done the requisite celebrating and can move on.

I’m going to do my best this week to stay focused on the future, and leave the past behind me. An anniversary is just another day. It is not happening all over again, so no need to keep reliving every moment over and over again in my head. What’s done is done and I have come a long way from then. No more mourning who I was – time to get back to getting comfortable with and accepting the new me. She’s not that bad, and hey, with a little time and attention, I can make her that much better…

Read Full Post »

I am an optimist. I always try to see the silver lining. While I may get a bit sarcastic at times, I try to stay away from the negative. But I can’t help feeling like someone is truly testing me. And starting to wonder what did I do? Why me?

I had a great weekend – really looking forward to my trip Thursday (see last post) to celebrate finally finishing the majority of treatment, had nice lunch with Alicia, great girl’s night sleepover with Tina and my Goddaughters, fun mani/pedi with Tara. Finally getting over my cold and sore throat. Even fit in a run and got my FitbitOne up and started before settling down in front of the TV with my laptop last night. On the right track!

And then I woke up this morning. It started as a slight pain as I got out of bed. I took a few steps to the bathroom, bent a little for my toothbrush and BAM! Shooting pain across my lower back, blinding, and sudden sweats – I thought I was going to pass out. I slowly made my way to my bed because every step hurt, and gingerly lowered myself.

Flashback to 12 years ago: A few weeks after my last miscarriage, I simply bent to pick up an empty laundry basket when I had a very similar episode, only it was worse: I couldn’t straighten from that position. The slightest movement made me want to scream with pain. With that, I ended up being out of work for over a month. Lots of rest, meds and PT.

Today was not that bad. I can move some. I can lay, propped up with my laptop and be in only minimal pain. Long story short, I went to the doctor this afternoon and his hope is that it is muscular. He gave me meds, said to rest, and offered a wheelchair for Florida. He believes it will be better by the end of the trip, as long as I take it easy. And if it’s not, then I will go back and we’ll do some tests.

So I guess I’m just a bit frustrated. I feel like anything I plan, something happens. Out of the blue, no rhyme or reason. Yes, I’m still going, but I don’t think I’ll be running around like I wanted to – or, literally going for runs in the sun, as I was really looking forward to! And dancing late into the night…

It will still be wonderful. I will be with my family and friends. And it will be warm. It will be all good. And maybe with lots of prayer (please everyone?) and rest (I don’t think I’ll be leaving my apartment before heading to the airport), I will be better in time to truly make the most of at least the majority of the trip… I guess some things only time will tell…

Interesting note: As I mentioned, I started my FitbitOne yesterday and I logged 7,816 steps, even with not having it on for the first part of my day. Today, I’ve worn it all day, including to the doctor, and logged a grand total of 608 steps. Yup. Haven’t gone far. I think the FitBitOne is being put away until after vacation and when my back is better I will try again… 

Read Full Post »

I am ready. It’s time to celebrate! I know, I know, I put up such a fuss just a few short months ago, so anti-celebrating anything. But not only is the 2011/2012 two-part hell year over, but so is 38! I turned 39 on February 9 and I feel like I have a new lease on life – and hopefully it’s a long one!

Of course, 38 couldn’t let go without a fight, so my birthday weekend featured a blizzard and not a lot of downtime, as there was much to do for work – I went from a utility where I had storm duty, to a biomanufacturing plant that must stay running 24/7, regardless of the weather. Snow days never mean much to me! Luckily, the governor lifted the driving ban my birthday afternoon, so a few of us braved the roads and went to dinner to officially mark the occasion. Thanks to Kevin and Tara for trekking and joining Nick and I!

The rest of the month was mainly a blur: lots of snow and sickness, I’m afraid. I’m not a huge fan of the white stuff, and it dumped more than what I consider our fair share on New England this month. And I caught a bad cold/sore throat that has lingered for three weeks now and just won’t let go. I was actually really looking forward to running what I thought was going to be my first (almost) 5k back on Rare Disease Day (see last blog post), but with still having a sore throat and barely running at all this month, I didn’t think it would be smart – especially with next week…

Oh, what’s next week, you ask? Why, the continuation of my celebration! In sunny Florida – Walt Disney World, to be exact! Several of my family and friends are joining us for a few days to celebrate so many things: It being 2013. Turning 39. The end of treatment (other than tamoxifen). And, it just happens to fall almost exactly a year from when I found the first lump. Happy Anniversary to me. So I’m going to take some time out, head south to the warmth, bask in the sunshine, enjoy some family and friend time, reflect on a tough year successfully concluded and focus on my fabulous future! I am so thankful for everyone in my life, and that I HAVE a life. I don’t want to take any of it for granted, and I want to not only appreciate it, but truly enjoy it, and the people who make it worth living! Cheers to you all!!!


Read Full Post »

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!

Read Full Post »