5 Things You Should Know about Young Adult Cancer Survivorship

HAWMCApril is Health Activist Writer’s Month and brings the official Health Activist Writer’s Month Challenge (#HAWMC). WEGO Health has developed a month of writing to engage the health blogger community in discussion about our individual illnesses.

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10th Annual Young Adult Cancer Conference at Dana Farber – April 6

How does a day spent around some of the adolescent and young adult (AYA) cancer movement’s most interesting, passionate, inquisitive and fearless warriors and supporters sound? Celebrate 10 years of coming together in support of the unique needs of young adult cancer survivors at the 10th Annual Young Adult Cancer Conference at Dana-Farber on Saturday, April 6 from 8:30 a.m. – 3 p.m. I will be there with bells and whistles on (and tweeting constantly from @allieemorse #listenconnectshare), don’t hesitate to say hi or come hang out with me at lunch if you don’t know anyone! I’m more than happy to meet and make introductions… we could all use a few more cancerfriends.

Register now. It’s the biggest gathering of young adult cancer survivors and caregivers in New England and a great chance to learn about services, opportunities, and organizations and meet new people. I am good friends with several people I met at last year’s conference! It’s worth making it down to Longwood quite early in the AM on a Saturday for this night owl.

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Posted in Events, News

Dear Mr. Romney…

I try not to take politics personally, but when I hear you say that sick people can pursue care in the ER, what I hear you say is “I do not care to know the reality of the sick in the United States.” When you say that your replacement for Obamacare will cover those with preexisting conditions, you routinely fail to mention that those who have not had continuous coverage (ie. those who were not dropped from their plan due to their condition) would still be unable to get coverage.

I may have cognitive impairment, long-term chemobrain, but I’m not stupid.

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Posted in News, Politics, Rants, Survivorship

World Lymphoma Awareness Day (or, all that you wanted to know about lymphoma and more!)

Every September 15th is World Lymphoma Awareness Day, nestled in Blood Cancer Awareness Month. September is all about awareness –  blood cancer, ovarian cancer, men’s cancers, thyroid cancer, and childhood cancers (which gets the most attention for obvious reasons). And in many ways, it’s the calm before the Pinkwashing storm. 

I was surprised to learn how little some people know about lymphomas. According to a Lymphoma Coalition survey in 2008:

  • When asked if they know their nodes, only half (49 per cent) of people said they know what nodes do
  • Although most respondents have heard of lymphoma, 52 per cent of people know very little or nothing about it
  • Two-thirds (67 per cent) of respondents did not know lymphoma is a type of cancer and that it has one of the fastest growing incidence rates worldwide
  • 90 per cent of people do not think enough is being done to fund lymphoma research

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Posted in Lymphoma Info

I get high with a little help from my friends

The gang on top of the cliff

On top of a cliff overlooking New Paltz and the Hudson Valley, Birdy reached out her arms and said, “After this, who cares about 5 years? The cancer is not coming back! I don’t care anymore!” Graduation day at cancer camp meant that we each reached our high climb – be it clawing our way up a rock face, dancing up boulders, picking our way across fields of stone, or hiking our way to the top. The calm of looking out for miles, knowing that together we accomplished something that few of us had thought would be possible for us again, was deeply moving. As we tied a white thread around each other’s wrists, not a person, stone, branch, or gust of wind failed to recognize the power of the moment. My First Descents FD1 week with Birdy, Indo, Splat, Token, Button, Lambo, Frankie, Smores, and Copilot (as well as amazing staff members Derf and Sweet D, camp mom Ola, medical volunteer Swifty, photographer Mojo, and chefs Biscuit and Pata) was life changing in every sense of the word. Read more ›

Posted in Personal Stuff, Survivorship

Climb all the Catskills?

For a year of my life, more people than I ever imagined called me brave, complimented my courage, or told me they didn’t know how I could deal with what I faced. To be honest, I feel like a complete and utter fraud. Putting one foot in front of another isn’t bravery – it’s surviving. When I got sick, I saw myself as a pillar of strength that could inspire a Lifetime movie. Instead, almost all of my coworkers have seen me in SOME form of an emotional outburst and the entirety of Newton-Wellesley Hospital has seen me in tears, naked, drugged up, and, if I’m lucky, occasionally not all 3 at once. My attitude is ambivalent at best and bitter and angry at worst.

No one puts Baby in a corner.

So once I entered my tenuous remission, I began to force myself to do things that made me really uncomfortable to live up to those mountains of compliments – not only for myself and the people who got me through treatment, but for the many other young adults who I have met along the way who never got the chance. Pollyanna as it may sound, survivor’s guilt is a bitch and in so many ways, my life now belongs to the hope that I can live the way my friends would have if they had the chance. If people want to draw inspiration from me then by gosh, I’m going to do it right!

When offered the opportunity to go on a First Descents trip this summer, I had the choice between rock climbing, white water kayaking, and surfing. I’m deathly afraid of heights. I had to pick rock climbing and I am now on my way out to the Catskills to climb cliffs.

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Posted in Nonprofit Spotlight, Personal Stuff, Survivorship

This one time, I was on the news

Things got so busy that I forgot to even post my (very brief) interview with Boston’s Channel 5 on here. A 30 minute interview was cut down to 2 lines, a shot of my very messy desk, and a walking shot that shows why I clearly have no career in acting (note: I cannot control my face).

But for those of you who are not my Facebook friends, you can catch last month’s interview at thebostonchannel.com.

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