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Guest Blog: What a Difference a Year Makes

Posted in Boston, Cancer, chemotherapy, Dreams, family, Planning, radiation, recovery, work, tagged , , , , , , , , , , , , , on April 30, 2013| Leave a Comment »

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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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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