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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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Crazy for a Cause

Posted in Boston, Cancer, chemotherapy, connections, Fundraising, recovery, work, tagged , , , , , , , , , , on April 29, 2013| Leave a Comment »

“I have to say you are the most active person I’ve ever met. You are exhausting just to follow on facebook.” Seeing that post from my cousin’s husband on my facebook wall when I woke up this morning completely cracked me up. “Ha ha ha – yes, I exhaust myself much of the time, too…” And this weekend was really a prime example of it:

  • Friday night’s fundraiser for One Fund Boston was AWESOME! We raised $3,175 for the One Fund – and Genzyme will add to that through our GIVE program. Not bad for just starting on Tuesday with Andrew IMing me saying “So do you think Friday’s too soon for a fundraiser?” So glad we did it! Thank you to everyone who helped, Nick for helping Andrew and me at the door, everyone who joined us, bought raffle tickets, donated raffle items – and Towne for donating the space and delicious appetizers. Such a wonderful venue! If you haven’t been, you need to check it out. Great people as well as fab food.

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  • Several of us went from Towne to Legal’s for a late dinner – and then I had a presentation to finish for work so there wasn’t much sleep before…
  • I had to be up early to attend Dana-Farber’s Second Annual Summit on Fundraising at the Copley Marriott. The initial panel with Dana-Farber doctors and staff was surprisingly difficult. Hearing the facts and statistics about cancer – even the positive ones on the progress being made – just really hit home. As Lisa Scherber, the Director of Patient and Family Programs, spoke about helping girls with cancer see that they are still beautiful, tears welled in my eyes. “Not sure I’m strong enough to be here,” I texted Tara. But I took some deep breaths, dabbed my eyes and tried to focus on WHY I was there – to get new fundraising ideas to help make a difference in people’s lives who really need it.  So I attended three other sessions: Fundraising 101; Social Media and Online Resources; and How to Secure a Sponsorship. I learned at least one new thing in each session, and they inspired other ideas that are now swirling around in my head. I texted Heather about our Jimmy Fund Marathon Walk Team and we are both so excited to kick it off – more info coming soon!!! (And please let me know if you want to join our team – Sept. 8, the Boston Marathon route, Hopkinton to Copley, although you can walk shorter 10, 5 or 3 mile routes.) One of the highlights of the day was running into a woman I met at the Young Adult Cancer Conference a few weeks ago. She lives nearby and we’re going to meet up soon. Of course the way we ran into each other – as we were evacuating Copley due to fire alarms – wasn’t fun, but at least they let us back in the building, told us it was a false alarm with the sprinklers, and were able to continue the seminar…
  • And then I had to run home and get ready for the Passport to Belonging event at the West End House Boys and Girls Club in Allston. Genzyme was a major sponsor of the event, so I was part of the event planning committee and have really been looking forward to the evening for months. I was joined at the dinner by several colleagues and friends, many for whom it was their first visit to the West End House. All were impressed with the facility, which is such an incredible place for kids of all ages in the community. I was relieved I got there in time to still purchase some of the things they made in the art studio and the kitchen, but next year I’m going earlier to make sure I get to see everything! At least we were there for the full program: Peter Gammons, the award-winning sportswriter, was there as he is the mentor of one of the students who was honored, and he interviewed both students on stage, really letting them tell their stories in such a great format; then there was a fun live ask and auction (I want to host an auction just so I can hire that auctioneer – she was a hoot!); and then we danced the night away to the Anthony Steele Band. No one could match Vanessa’s moves, but we all had fun trying! 528410_10201006189144049_738326541_n
  • Today it was hard to wake up – but I did, as I got to have lunch with Tina and my three beautiful Goddaughters. It’s only been a little while since I last saw them, yet somehow they grew so much!!! After lunch Allegra and I went shopping for her shoes and accessories for her upcoming Best Buddies prom. We had a great time, and now she’s all set! Can’t wait to see the pictures…

So yes, I may be crazy busy much of the time – and yes, I will try to get more sleep, Dad – but at least I’m crazy for a cause. Several of them, actually… so it’s more than worth it! Just wish there were a few more hours in each day, or another day in the week…

 

 

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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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