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With Joncille and Aunt Patsy, October 2011

With Joncille and Aunt Patsy, October 2011

I. Hate. Cancer. I want to scream and cry and hit things. But none of it will bring my cousin back.

I found out this morning that my cousin Joncille – my dad’s cousin, so my second cousin if you want to get technical – passed away. She gave in to stupid cancer. She has been suffering off and on for years, and, according to my uncle, didn’t want to fight any more. I was shocked.

I got to know Joncille when I visited her and her husband in Sugar Land, Texas, on my road trip. (You can read about it here: https://amysamerica.com/2010/11/09/finding-my-roots-on-day-61/) They welcomed me into their home with open arms and I couldn’t have felt more at home. It was like we were long lost friends. It was actually the beginning of a great friendship. Joncille was a wonderful support through my treatment. A constant cheerleader, encouraging me to remain positive, to trust in God and to know that I really would get past it all.

“I would like you to know, though, that this too will pass, and you will move  through this hardship one day at a time and in the bright future it will seem  like a bad dream,” Joncille wrote to me – and she was right. She sent me love, thoughts and prayers for strength, courage and healing. And they gave me strength and will to continue to plow through treatment.

“…grab hold of the positive things. Doing that will absolutely save your life and your sanity,” she wrote to me.

“From one who knows, bald ain’t too bad. One swish with a wet wash cloth and you have washed, dried and styled your hair and are ready for the day. And again,  from one who knows, it grows back.” Yup, right again.

And when I found out I did, in fact, need radiation, Joncille gave me a new way to look at it: “I do want to warn you that when you first see the tattoo that  marks the spot to radiate, you will feel that you have been marked as a CANCER  VICTIM, but YOU ARE NOT!!!! They are marking a survivor. I knew a radiologist many years ago that envisioned the power of the Holy Spirit entering  her patients as she applied the radiation. I held that vision in my mind  when receiving mine. I promise that there is a life after cancer.  It  just seems like a never ending saga right now. Hang in one treatment at a  time and before you know it they will all be over.” I adopted that vision from Joncille, and it was such a comfort…

I feel robbed. It’s not fair. We didn’t get enough time together. I want to hear more of her stories. I want to take her up on her offer to return to Sugar Land with my Aunt Patsy, who was one of her best friends. Joncille and Aunt Patsy remind me of Tara and me, cousins, confidantes, travel buddies and dear friends… and that just makes it all hit home even more.

No, life is not fair. I guess we all know that by now. And life is short. So don’t waste it. Spend time with the people you care about. Tell them that you love them. Be a real friend. Cherish the time you have. You don’t know when it will end.

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“All you can change is yourself, but sometimes that changes everything.” – Anonymous

The past two weeks I’ve been beat up, beat down, sucked in, worn out, and had more extreme highs and lows than a rollercoaster  – definitely felt the whiplash. Worst of all, it did such a job on my self-worth that I didn’t even feel like or recognize myself. I felt helpless and lost. (And dumb and unattractive and naïve and…) And I just went with all of it. Let it happen. I was at the mercy of the people and circumstances around me. And I was seriously worried that I’d never be me again – I didn’t know how to get the strong, independent, positive woman back.

“Time heals what reason cannot.” – Anonymous

I know it was not a very long time (although it felt like years) but somehow, I’ve snapped back. I feel like me again. I don’t know if it was time, telling my story (see below), the tattoo (also below), the Red Sox going to the World Series (woo hoo!!!) or what, but somehow this morning I woke up for the first time like “I’ve got this.” I can take my life back. And I’m going to.

“When writing the story of your life, don’t let anyone else hold the pen.” -Harley Davidson

I love that quote! It’s so true. Take control. Be you. Don’t let anyone else dictate your happiness, make you feel like you’re not good enough or think that there is anything you can’t do. (And don’t ever try to ‘fix’ someone else’s life – especially if they don’t want to be helped.) I used to know (and live by) that, and now I’m going to again. To be honest, I’m a little ticked off that this happened during the month of pink, when there were so many events with such great people, but then again, maybe it was keeping busy and doing all the events and seeing everyone that helped me snap back so quickly?

This has been a whirlwind of a Breast Cancer month:

  • Started at the end of September with the Komen walk, followed by the incredible Runway for Recovery event, and then the American Cancer Society’s Making Strides for Breast Cancer walk – all of which I already blogged about.
  • Last weekend the fun continued in Providence at the Gloria Gemma Flames of Hope run/walk. Alicia pulled together a team, including her fellow Rhode Island Charity pageant queens, their families and my friend Abby. In addition to all of us walking in the 5k, Alicia even ran the Pink Pump Palooza 50 yard dash in heels!
  • Friday mom joined me for Dana-Farber’s Breast Cancer in Young Women Forum. Because of how I’ve been feeling, I couldn’t even focus or make myself really think through what I was going to say until that morning. I’ve been in such a fog, I really didn’t want to do anything except what I had to. Luckily, I knew I had to do this, so that morning, mom and I left early, went to Dunkin Donuts and thought for a few minutes over tea. Then I told her, “Ok, I’ve got it. The most important thing is to have 1-3 main points. Here’s mine: You’ll hear lots of stories today – that’s the best part of days like today. But the most important thing to remember is it’s all about you. Everyone is different. Some things work for one person, but not another. You are unique: do what’s right for you.” And then, thinking through my story and all that happened since March 2012, I came to my second point: “It doesn’t matter if you’re married, single, have children or live alone – surround yourself with people who love you, who make you happy. That’s what got me through – all the incredibly loving and supportive people I’m so lucky to have in my life. And let them help you – it will help them through it, too.” (See, Tina, I do listen sometimes…) And the talk – and the day – went well… and I started to feel a little more like me…

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  • Friday night, while not breast cancer-related, I went to Salem with friends from our running team, to experience some of the haunted happenings. I know that just spending time with these friends who inspire me with their marathon runs and overall kindness and determination in life helped me feel more like me again…

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  • And finally, Saturday night was one of my favorite nights of the year: the Nashua Harley-Davidson Fashion Show and Live Auction Making Strides Against Breast Cancer Benefit. As you’ll see in the pictures below, Nick, Alicia, Vic and I all had a blast! Robin Dixon, of Nashua Harley-Davidson, is such an amazing supporter of the American Cancer Society and makes the event even bigger and better each year! In addition to winning things in the raffle and auction (and losing a few things like my TV, darn it!), we had fun with people asking to wear Alicia’s crown, the great food and… my first tattoo! Not only did I do one, but Nick also got a pink ribbon – his with wings…

So I’m not sure what actually did it, but somehow, thank God, I am me again. I love my life, am so blessed by all the fabulous people in it, and I will not let myself get lost so easily ever again.

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Sometimes I forget. It’s actually getting so that I think about cancer less and less. By this I mean it only pops in my mind a few times a day rather than every few minutes, but still. It’s progress. But in the last week or so there have been more and more reminders:

  • Before the walk and trip, I had an appointment with Dr. H. Luckily, my tissues have relaxed and we are finally able to schedule the implant surgery! It’s looking like December. I am so looking forward to not being rock hard and feeling like a freak any more…
  • A dear friend of mine, who has been so supportive and encouraging through my journey, had a double mastectomy. Rest up and feel better, Jillian!
  • And multiple friends had family members or friends die of cancer. Every day I am so thankful mine was caught so early, and that there are treatments for my type. I know I am so blessed…

And it’s because I am so thankful that I want to do all I can to support others in their cancer journey. While most of the time I’d like to erase it from my mind and pretend it never happened, any time retelling my experience or even just supporting things like walks, can help someone else, count me in! And the month of pink is quickly approaching – in fact, events are starting this month:

  • This Thursday, Sept. 19, 7 p.m. is the Bright Pink Experiential Outreach – Enjoy light bites at  Joe’s American Bar and Grill, Newbury St., Boston, while connecting with other Bright Pink women in your community to discuss mutual experiences. This event is open specifically to high-risk individuals. If you have any questions or to RSVP contact Community@BeBrightPink.org.
  • Sunday, Sept. 29, 9 a.m. is Komen Race for the Cure 5k Walk/Run  in South Boston. It is so much fun – so much pink! 🙂 I’m excited not to be bald for the walk this year! 🙂 Oh – and for a couple more days there is a half off deal for registration on Living Social.
  • Sunday Sept. 29, Nashua, NH, Harley-Davidson Second Annual Save Second Base Ride for Breast Cancer. No, I’m not riding in this but encourage anyone with a bike to do it! Info: http://www.nashuahd.com
  • Thursday, Oct. 3, 7 p.m., Revere Hotel, Boston: Runway for Recovery, a fashion show, silent auction and raffle to benefit families who have lost mothers to breast cancer. I’ll be volunteering with some friends from Genzyme, but you should attend and enjoy the evening!
  • Sunday, Oct. 6, 8 a.m., Hatch Shell, Boston: Making Strides Against Breast Cancer Walk I’m really looking forward to doing this walk for the first time – the American Cancer Society helps so many people every day, and certainly helped make my experience better…
  • Sunday, Oct. 6, 11 a.m., Worcester Run Like an Antelope: The 2nd Annual Memorial 5K and 1-Mile Fun Walk in Memory of Megan Proceeds go to Metastatic Breast Cancer Research conducted at UMASS Medical School. I am hoping to make it over to this after the walk, if at all possible!
  • Sunday, October 13, 10:15 a.m., Providence, RI – Gloria Gemma Foundation Pink Pump Palooza, 5K Run/Walk and 10K Run – join Alicia and me on the Pink Pumps for a Cure Team or sponsor us! And hey, it starts and ends at Providence Place, so you can get some good shopping in after…
  • Friday, Oct. 18, 8 a.m., Lucca Boston: Breast Cancer in Young Women Forum for Patients and Survivors (A great day, no matter where you are in your cancer journey – and I will be speaking on the patient panel! And Dr. H will be talking at this event, too, so if you need a fabulous reconstruction surgeon…)
  • Saturday, Oct. 19, 4 p.m. Nashua Harley-Davidson Fashion Show and Live Auction – this is organized and run by my friend Robin and it’s one of my FAVORITE events of the year – so much fun! Fun Harley-Davidson Pink Fashion Show, live auction, huge raffle, great BBQ – and I think I’ll even be getting my first tattoo (a survivors ribbon) at the event. Who wouldn’t want to go witness that? LOL!

I’ll try to keep the event list on the right as up-to-date as possible, but never hesitate to e-mail me if you have any questions. Hope you can join us for some (or all) of these great events. Hey, if we have to be in the world of cancer, at least we can be there together, support each other, learn from each other, make each other laugh and smile – and wear pink! 😉

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I’ve been so bad – totally procrastinating about updating this blog. I hate it when I do that. So much builds up, and then it weighs on me, and I know I’ll forget something… oh well! Deep breath and here are the high (and low) points:

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  • THANK YOU, thank you, thank you to EVERYONE who donated to our Boston Marathon Jimmy Fund Walk! Whether you donated $10 or $150, every single cent helps in the fight against cancer! Together, Heather, Tara, Amanda, Calley and Mia-Claire raised more than $3,400!!! I’m so proud of us – especially the little girls for joining us and being so fabulous and not only walking the 13.1 miles, but even throwing some cartwheels in along the way! And it’s not too late to sponsor our team – please help the girls get to their $100 minimum by sponsoring them here: Team Inspire Boston. Thank you!!!
  • As soon as the walk was done, Tara and I ran (well, not literally – we took the T…) back to my house, I showered, changed and she drove me to my cousin’s wedding. It was so fabulous seeing some of my family who I haven’t seen in so long, but couldn’t help crying as I left because my time with them was too short – but I had to catch a plane…
  • Tara and Ella were the best chauffeurs and cheered me up en route to Logan. The flight was ok (I fell asleep praying as we went through major turbulence, but hey, we landed, so all was good) and my arm faired pretty well. (Damn lymphedema.) I put my compression sleeve on while waiting to board the plane and I could tell by the look in the eyes of the woman sitting across from me that she knew exactly what it was for. She looked so kind and sympathetic, I both appreciated it and wanted to scream. I hate feeling like the girl who had cancer!!! Anyway, after all the walking and the flights there and back, there’s not really much noticeable swelling, and only a little pain, mainly in my hand. I have to get back to doing the massages every day, but I haven’t even been doing that. At least I’ve been wearing the sleeve when running. That’s something, right?

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  • Paris: it was a whirlwind work week. I was disappointed by how dark it was in the mornings, so my visions of waking every morning and running along the Seine quickly vanished out the window. I did get one good, five-mile run/walk in on the last day before my flight. It was great, even if the weather wasn’t that wonderful. The conference was really great, though – especially meeting Sanofi communications people from all over the world and hearing about all the great progress we’re making in the healthcare industry. I’m so proud to work for Genzyme, a company that truly cares about making a difference in people’s lives.

Didn’t I write something a little while ago about slowing down??? Hmmm… don’t think that’s happening any time soon…

 

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It occurred to me that there are so many cool things going on that I want to spread the word about, so I created a new widget on the right of your screen called Upcoming Events. I’ll try to keep that as current as possible, and will usually provide a link for more info, too.

Learn: Bright Pink Boston is hosting Breast and Ovarian Health 101 on Tuesday, June 11, 6 p.m. at the Boston Public Library. “Become empowered to be proactive with your breast and ovarian health. This educational workshop could be life saving for you and/or someone you love!” I’m going and it would be great to see friends there!

Walk/Run: Some of our Genzyme Running Team members have teamed with employees from other Cambridge area life sciences companies to organize a 5K to remember those affected by the Boston Marathon bombings, to raise money for the One Fund, and to recognize local police officers for their service. You don’t have to work for a biotech – everyone is welcome! Thursday, June 13, 4 p.m., Genzyme Center, Kendall Square, Cambridge: Cambridge Life Sciences Memorial 5k for The One Fund

Walk/Run/Roll: This Saturday, June 15, 10:30 a.m.at the Massachusetts Hospital School in Canton is the fourth annual Spina Bifida Walk-N-Roll! I’m not sure if I will be able to make it, but please support my cousin Hannah’s team, Hannah’s Banana’s: http://www.walknrollsbagreaterne.org/ng/index.cfm/aa26888/regPages/pledge/HBANANAS97/

Paint: Urban Art Bar Event to Benefit Bright Pink Boston, Wednesday, June 26, 6:30 p.m. “Sip, socialize and paint at the Urban Art Bar and benefit the Boston chapter of Bright Pink!” Really wish I could go to this, but believe I will be away for work. Please go and have a drink for me – and have fun painting. 🙂

Walk with Us!!! I am FINALLY getting organized and really getting our Boston Marathon Jimmy Fund Walk Team (Sunday, September 8, 2013) rolling. Please join our Team Inspire Boston – sponsors are also welcome/needed! I’ll post more about this soon, but no need to wait – sign up or donate here: http://www.jimmyfundwalk.org/2013/teaminspireboston Thank you very much!

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“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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Last week was emotionally exhausting (and physically exhausting for many, especially for those who started it by running – or trying to run – 26.2 miles). Friday’s intense manhunt for the Boston Marathon bombers, and the mandated lockdown throughout Boston and the surrounding communities, put us all on edge and paralyzed us at the same time. We all breathed a collective sigh of relief as the good guys finally won and captured the last of the bad guys (that we currently know of). And as it all came to a victorious end, as people clapped in the streets for all who do their best to keep us safe, I posted the following: “It just occurred to me why I am so bound and determined, so driven, loyal, passionate, proud and strong – because I’m from #Boston.”

You can’t help but be proud of the outpouring of support and kindness that has spread not only throughout the city or state, but literally throughout the world! I have heard from friends all over the globe about signs and runs and tributes to the people of Boston. It’s amazing, invigorating and inspiring. We all want to help those directly impacted. And luckily, the city and state joined together and created One Fund Boston to directly benefit the people most impacted by Monday’s horrific events.

One of the Genzyme Boston Marathon Team members asked me today if I thought it was too soon for a fundraiser, as he found a willing venue for this Friday night. Maybe, but maybe not – why not try? So this Friday night, April 26, Andrew and I are hosting a fundraiser from 6-8 p.m. at Towne Stove and Spirits at 900 Boylston St. Boston. They are just reopening, and we want to support them – and thank them for letting us have this in their upstairs bar for a few hours for this event. For a $10 donation, you will get admission and free appetizers (while they last), and a chance to buy raffle tickets for some fabulous prizes like:

  • Two tickets to see Kenny Chesney at Gillette Stadium on Friday, August 23, 2013
  • One night stay the the DoubleTree Boston
  • Restaurant gift certificates
  • And more!

I hope you can join us, even if just for a quick hello, hug and a drink, before you head out for the night. 100% of what we raise will go to One Fund Boston. We can make a difference. We can help. We are Boston Strong.

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