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Posts Tagged ‘research’

I thought I could get away from cancer. I thought by ending the blog, I wouldn’t think about it every day. Ha! Once you’ve been diagnosed, it doesn’t matter that you’ve finished chemo, radiation, multiple surgeries and been declared “cancer free.” It is always there. With every strange feeling, with each routine health screening, with every glimpse of myself with hair! And now, as many of you know, cancer is my ‘day job,’ too. I wondered if working for an oncology organization would be difficult or depressing, but it’s really the opposite: it energizes me and gives me hope that we can really find a cure (or, realistically, multiple cures)!

If you read my last blog entry, you know that my heart broke over the recent death of a breast cancer sister. This must stop! Help us create happy endings by funding the research needed to find better treatments and cures for all cancers. There are many ways you can help:

Join our fabulous team!!!

Join our fabulous team!!!

  • If you live too far away, are busy that day or just prefer to donate rather than walk, while we will miss your company, we would so appreciate any donation. You can donate by clicking here – and please don’t forget to complete your company’s matching gift request, if applicable!
  • Do you need anything for your kitchen? Shop one of our fundraisers and not only can you get what you need, but a portion of the proceeds will go toward our walk!
  • Have an idea for a fundraiser that can be done by Sept. 21? Please e-mail me and let’s talk!
  • Finally, another of my very favorite events of the year is coming up: Runway for Recovery! Join us on October 16 at the Revere Hotel for my (I never thought I’d say this) modeling debut! Buy tickets here, come cheer me and the other survivor models on, and you will be helping children who have lost their mothers to breast cancer, as well as providing opportunities for health care providers who care for such patients. It’s such an inspiring night – a true celebration of life, sisterhood and survivors.
Last year, I volunteered with Genzyme friends for Runway for Recovery - and excited to be modeling this year!

Last year, I volunteered with Genzyme friends for Runway for Recovery – and I’m excited to be modeling this year!

Please remember, together we really can make a difference and help find a cure! Thank you for helping us kick cancer!!!

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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 am frustrated. (Hmmm… I don’t think this is the first time I’ve started a blog entry with those words!) Ever since March 2012 when I was diagnosed with breast cancer and my dear friend Heather said “We are doing the Jimmy Fund Marathon Walk in your honor!” I’ve wanted to walk the full 26.2 miles. Last year I was still going through chemo, and hadn’t even begun radiation, so was only able to do the last five miles with the team. I said this was going to be my year!

Now it’s looking like it’s not. No worries, it’s not severe health related or anything truly bad like that, it’s just about listening and being smart. You see (maybe you should sit down, this is such a shock coming from me), I have a lot planned on September 8.

  • First there is the Jimmy Fund Boston Marathon Walk. I intended to walk the full 26.2 miles, beginning at 6:30 in the morning and guesstimating being done about 2 p.m.
  • Then it’s my cousin Rick’s wedding late that afternoon in Wrentham…
  • And as if that isn’t enough for one day, I need to then get to Logan for a 10:30 p.m. flight to Paris. (Yes, Paris – for work.)

At first it was like “great – you’ll be so tired, you’ll conk right out and sleep the whole plane ride!” Ah, but I can’t! We can’t forget the delightful lymphedema in my right arm! I was told that I will need to be up exercising it and walking around every hour of the flight – oh, because of the fear of blood clots, too, because of the tamoxifen. And this is also if my arm isn’t already swollen from the intense walk…

So my close friends and family have all chimed in. And there has not been one person who is in favor of my doing the whole 26.2. In fact, some have quite vehemently told me I will NOT be doing the full walk. (Note: when told I absolutely cannot do something, that usually makes me want to do it even more.) Arrrggghhhhh!!! Why does it all have to be on the same day???

But none of those dates and times are in my control. What is in my control is my body. And how much I put it through that day (and every other). Sometimes I forget I’m not superwoman. That I have limitations. (I know, this blog is full of shockers tonight, huh?) I honestly don’t want to be in pain or have an abnormally huge right arm for my Paris trip. I want to actually be in the work meetings I will be there for, not in a Paris hospital, simply because I was stubborn and insisted on doing it all.

So that’s that. I will only walk the half marathon: 13.1 miles. I’m trying to get over the feeling of letting people down by not walking the whole thing. I feel like I’m letting everyone down (not really sure who everyone is, but just everyone). The Jimmy Fund. Dana-Farber. Everyone who is donating to my walk. Myself. I know in my head that it’s not true; no one else feels that I’m letting them down. I will keep reminding myself that. And I will remember that, thanks to Dana-Farber and all the awesome doctors, researchers, nurses and everyone there, I am here and able to walk and raise money to help kick cancer!

And thank you to everyone who has sponsored me and my team – Team Inspire Boston – so far. I’m one-third of the way to my personal goal, and a quarter of the way to our team goal, all thanks to YOU! If you haven’t yet donated, please visit my personal donation page – even a few dollars – every cent counts and helps us conquer this horrid disease! Or even better: join us for the walk! Any distance is welcome! Go to Team Inspire Boston to sign up and enter code JF2013 for $5 off the registration fee. We’d so love to have you cross the finish line with us!

Oh, and speaking of Dana-Farber and the Jimmy Fund – it’s the annual telethon, which Nick and I were part of this year… and I guess in a way this year, too. I just saw this pop up in my Facebook Newsfeed from The Jimmy Fund:

jimmyfundtelethonCrazy to think that I looked like that one year ago. Boy, am I happy to have hair again! But if (literally) baring my head helped inspire someone to donate and help #KCancer, it was worth it!!!

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I’m Lucky

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I do not have a rare disease. I am lucky that what hit me last year is one of the most common diseases. It may suck, but people know what it is, doctors can easily identify it and there are numerous treatments available. People with rare diseases are not so lucky. Often just getting a diagnosis is a struggle, never mind finding a treatment. That’s why awareness is so important. And that’s one of the main goals of our Genzyme Boston Marathon Team – to raise awareness of rare diseases, as well as funds to support NORD, the National Organization for Rare Disorders.

Want to help? Bid on one of the very cool items on our online auction at www.runningforrarediseases.org – it ends on Friday, April 12, at noon, so you better hurry up! Not up for shopping right now? Put on some warrior paint, like Nick and I did above. Each of our Marathon Team members are paired with members of the rare disease community. Phil is running in honor of little Wylder James who battled Niemann Pick A disease, and his parents have started the Warrior Paint Campaign:

“To show Phil our love and support for his efforts, and to remind him our Warrior Wylder James will be with him in spirit every step of the way … we have come up with a Warrior Paint Campaign!!  The goal is to receive 1,000 photos of YOU in your WARRIOR paint by next Monday!! It’s simple.  Dabble a bit of Warrior Paint (aka. face paint, or sunscreen) onto your cheeks and the cheeks of those you love and send them our way.  Send to me at shannon@wyldernation.org or post to the WN FB Page at https://www.facebook.com/Wylderjames ”

So get out your makeup or whatever and share the warrior in you!

 

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My first radiation was fairly uneventful, which I consider a very good thing. I’m praying the next 24 will be just as anti-climactic. But what I observed while at Dana-Farber made me happy. I saw a woman who (apologies for judging a book by its cover) appeared to not be very well off be given a small tube of lotion that I paid $25 for without blinking. You could tell by watching and a bit of eavesdropping that she was incredibly thankful. I don’t know, maybe her insurance paid for it, maybe someone else, who knows – but what I do know is that Dana-Farber makes sure you have what you need, whether you can afford it or not.

So what do I want for Christmas? Well, to be honest, my first wish is for it to be last February, turning 38, with long brown hair, 25 pounds lighter, feeling like I’m on top of the world and ignorant of most things cancer. But since I don’t have a magic wand or fairy Godmother, that would be a waste of a wish. And I hate wasting something as special as a wish. This is what I want for Christmas:

I honestly don’t want anything more than this for Christmas. So if you insist on getting me something, please have it be a card saying you made a donation to support something like this – or wherever you want to help those who really need it. And if there isn’t something specific you want to contribute to, fundraising continues for the 2012 Boston Marathon Jimmy Fund Walk until December 31, so even if you already sponsored me, you’re welcome to do so again (I promise this will be the last time I solicit support for the 2012 walk… 😉 ) or visit my brand new Jimmy Fund donation page here. Seriously, supporting the place that has made this horrid year a little bit easier is my only Christmas wish. I can’t help thinking the same thing I thought last year when I was making donations for presents in honor of Mirany (and you can donate in her honor here) – what could we possibly need more than our health?

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There are countless things to be thankful for every single day. And when bad things happen to you, it just gives more opportunity for the good things to shine through. While we should continually be saying ‘thank you,’ Thanksgiving provides us all the perfect platform. So here is just a very small sampling of the many, many things I am thankful for…

  • that I am here to be able to say thank you
  • early detection
  • my crazy, loving, unbelievable family here, in Florida (Tennessee), West Virginia, etc.
  • Nicholas George Tull Atwood – and that there is only one of him! 😉
  • friends – old and new, close and distant, who provide distractions (whether big like Nashville or small like WWF), make you laugh, let you cry, take you to Outback, join you at chemo or just wish they could
  • long walks and talks, planning sessions and Pinkberry
  • people who stick by your side, even when they are going through so much themselves and it’s not easy for them to do so
  • people who tell you what they think, even when they know it’s not what you want to hear
  • cards, e-mails, texts, facebook posts, calls just because
  • hand made cards and crafts by (and hugs from) children who love you and just want to help make you feel better – and do!
  • little boys who have pink birthday cakes
  • Dana-farber, the Jimmy Fund and Brigham and Women’s
  • doctors, nurses, researchers and all healthcare workers who not only treat you but care
  • organizations like the American Cancer Society, Susan G. Komen, Bright Pink, Gloria Gemma and so many others that raise awareness and funds for research, and help people with cancer in countless ways including to feel better about themselves
  • that I live now, when cancer is not an automatic death sentence and treatments have come so far…
  • that side effects will fade, my hair will grow back and with a little effort when I get my energy back, I can lose the weight I’ve gained during treatment
  • Genzyme and the incredibly supportive people who work there
  • running friends who inspire and encourage me
  • music, movies and books you can escape into
  • Boston, the best city for practically everything – at least the best city for me, now – wouldn’t want to be anywhere else
  • Cape Cod, the ocean, the healing power of just being by the water
  • that I was born an optimist
  • that people love me even when I’m the Wicked Witch
  • that every day is a new opportunity to start over
  • all the people who have added me to their prayer lists around the world, and all the people who don’t know me but pray for me, send me positive vibes or simply wish me well

I could go on and on and on – I know I’m leaving so much out! – but we all have friends, family and turkey to get to, so I will leave it at that… Happy Thanksgiving, all, and thank YOU for caring about me and my family and reading this blog. What are you thankful for?

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I didn’t want to go. It’s a club I never wanted to join and while I do blog about it, I try to ignore it whenever I can and just pretend I’m normal – or at least as normal as I ever was. But because I think knowledge and connections are better than ignorance, I went to the Breast Cancer in Young Women Forum for Patients and Survivors hosted by Dr. Ann Partridge and The Program for Young Women with Breast Cancer at Dana-Farber. While on my way there I was thinking there are so many other ways I’d rather spend a vacation day from work, I have to agree with one of the survivor panel members who called the gathering a gift – because that’s exactly what it turned out to be.

The first thing that struck me as I walked through the door of Lucca, the fabulous Back Bay restaurant where yesterday’s event took place, was that among all the patients and survivors packed into the venue, I was the only one with a naked head. Tons of wigs, hats, scarves, and of course hair, but I was the only one completely bald. I didn’t have much time to dwell on it, though, as I was instantly drawn into conversation at a table by a friendly young woman who asked ‘Are you in our support group, too?’ who, when I shook my head no, replied with a shrug, ‘That’s ok, you can be now!’ And I immediately relaxed and felt accepted.

As soon as the first session started – a patient and survivor panel – I remembered why I really haven’t spoken to many people who have had breast cancer, why I’m not in any support groups and why I am not in counseling: because I hate being vulnerable. I don’t like to cry – especially not in front of other people. There are very, very few people I ever let myself break down in front of, and they see it as a novelty, and either laugh at me (in a most loving way – you know who you are – I have called her when I was crying just so she could smile and SOME good would come of it), or are horrified because they know it must mean something’s pretty bad because it doesn’t happen often.

Needless to say, as soon as the panel started, the tears started flowing. I was not alone, and the well-prepared folks from Dana-Farber had stocked every table with tissues. While each of the stories were heart-tugging in their own way, what it really did was make you think of your own story. How it felt when you first found the lump, had the biopsy, heard the words that you have cancer. It’s a time I try not to think about much for so many reasons. But in a room like that, you can’t help it.

What you also can’t help is feeling rather … normal. My story is just like thousands of women’s: I found a lump, had surgery, am getting through chemo. I’m not running five miles a day after every chemo session like Kristen, I was not about to get pregnant when I was diagnosed like Angela, I don’t have toddlers at home to take care of through chemo like Carie… I actually have it pretty easy. And for that I am thankful (although I wish I had the willpower to run every day).

After getting those initial tears out of the way – necessary as it broke down what few walls were in that room and connected us all; after all, you’re much more comfortable once someone’s seen you cry – it was on to the facts: presentations by Dana Farber doctors, nurse practitioners and social workers. Throughout those sessions featuring the latest research, statistics and Q&A, the little voice in my head kept chiming in:

  • Only 5% of breast cancer patients are 36-40 years old – ugh. Lucky me.
  • Breast cancer is still the leading cause of death for women age 40-49. This has to end. Reminds you why all the pink awareness around is a good thing. We still have so far to go to stop women from dying of this stupid a$$ disease!
  • Good news: research is breaking down breast cancer and the consensus is there will not be one single cure, but multiple targeted, individualized cures for each type in the not unforseeable future.
  • One whole section on why this could have happened – was it because I was overweight? Didn’t heat healthy enough? Didn’t exercise enough? Ate too much red meat? We know it wasn’t because I drank too much, and the fact that I got pregnant with Nick when I was 16 actually reduced my risk for getting breast cancer (although clearly not enough…).
  • Must: stop eating so much ’cause weight gain is a factor in reoccurrence. Must also exercise more because that helps decrease reoccurrence. Because that’s the biggest fear. The elephant in the room. Please make this go away and end my nightmare. I will do anything, including cut off my breasts, which I already did, and poison myself, which I’m doing every Tuesday. So then…
  • Everyone is talking about radiation – am I making the wrong decision, electing not to have it after chemo? Must reassess.
  • Oh crap, I forgot about lymphedema. I need to be somewhat careful. And I have to get a compression sleeve before flying…
  • So much talk about fertility – am I really done? Did I want another child, now or in the future? Should I consider other options? Would be a lot easier to consider if I had a significant other.
  • Am I the only person not married in this room? How is it most women are lucky enough to have a supportive spouse or significant other by their side through all this crap? Thank God for my fabulous family and friends so I am not completely alone. (And much better to be alone than to have a significant other who just makes it worse by giving the pretense of being there for you when he’s really not. Nothing hurts more.)
  • So some kids are embarrassed by their mother being bald. Not mine. He not only shaved my head, but encouraged me to forget wigs, hats and scarves and ‘rock the bald’. You rock, Nick.
  • Stress may not cause breast cancer but it can increase inflammation and other side effects, and make it harder to cope. Which explains my increasing pain as we get to Thursday and Friday each week…
  • And then a glimpse into my future and tamoxifen: the side effects I get to look forward to for five years. On this one, I will pull a Scarlett O’Hara and think about it tomorrow.

There was an upside to being the only bald girl in the room: I was chosen to be the model for the Look Good… Feel Better session put on by the American Cancer Society. Not only did Nicole from Dana-Farber do a fabulous job with my make-up, I got to keep the bag full of make-up that she used on me!

The best parts of the day, though, were definitely those times that you got to talk with those around you. To hear similar stories, to offer advice to those newly diagnosed, to share tips and good books (I’m ordering both the Lance Armstrong one and the one by Kelley Tuthill – thanks Erin!). And to learn more about others trying to help women with breast cancer, like the ladies from the Gloria Gemma Breast Cancer Research Foundation for women in Rhode Island and the Young Survival Coalition. There are so many ways to connect and make a difference. I am going to call this week and see if I can get into the support group that many of my tablemates are in, and if not, I am sure I will make friends with the women in the group that I do join. Because Carie was right: this day was a gift. And I am not going to waste it.

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