The busy social calendar of a D list cancerlebrity

Note: I am going to obnoxiously use the portmanteau cancerlebrity for at least another month. I apologize ahead of time.

One of my personal inspirations (and soon to be guinea pig for my shiny new MBA strategic planning skills), Jonny Imerman, says “Be proud of your cancer”. That was only one of many gems of insight shared by Jonny and dozens of survivors, caretakers, and  supporters at March 24th’s Young Adult Cancer Conference at Dana-Farber. The young adult cancer family (and yes, we very much are a family) came out in force in support of each other – there was so much love over the day as we shared our stories and learned from each other about how to deal with the physical, emotional, and practical concerns in which our non “cancer-friend” friends cannot really relate.

The conference reminded me about how far I have come since before I was diagnosed. A lot of people say that cancer is the best thing that’s ever happened to them. I won’t say that – it feels trite and flippant to me. However, I have certainly grown in unexpected ways. Cancer flipped a switch that has allowed me to be more extroverted and, dare say it, more confident.

I have gotten more and more involved with the SAMFund (which I can attest is a fantastically needed, fiscally responsible organization that you should all consider in your giving plans), including serving on the planning committee for the upcoming fundraising concert at Church in Boston on June 16 (details coming soon). On our first conference call, people were a little less than chatty so Sam, the ED and a dear friend, said something to the effect of, “Allie, I know you’re not shy! How about you start us off?”

Somewhere, my elementary school teachers who tried so hard to get me to speak up are smiling.

Cancer turned up my “extrovert” dial. As cliche as it sounds, I know that I have this voice to preach from the rooftops about the needs of my community, and the needs of healthcare reform for all, so I use every opportunity I can get now to practice speaking up – a skill that this introvert has allowed to grow dusty with neglect. I am no hero – I just know that I can push myself to uncomfortable limits to speak for people who cannot. If there is any benefit to getting cancer so young, it’s that I have learned how far my boundaries can really be pushed years before I should have had to learn that. I have the gift of time to use that knowledge, and I hope not to waste it.

Last week, I went candlepin bowling with the The SAMFund, at which I was dubbed the most nonchalant bowler (a kind way of saying that I can’t avoid a gutterball to save my life). The SAMFund Survivor’s Network events are always a blast – people have gotten to know each other over the years and are eager to get to know new people.

And I think that’s what I love best about the adolescent and young adult (AYA) community. We come from dramatically different backgrounds but we have this one thread tying us all together, but many of us have built lasting relationships out of our common challenge.

At this event, I met the lovely author of Chemopalooza – a fellow Hodger whose blog helped me through the early days of my diagnosis. She went through treatment about 4 years before me, but I gleaned so much wisdom from her words. It was in her spirit that I had a hairhacking party (though not called Chemopalooza :P). I love meeting the authors of the blogs that I read because it’s so easy to think that you are writing out there to the void. This blog started as a way to let my scattered friends and family know what was going on with my care so I didn’t have to repeat myself. Then it turned into a bit of personal catharsis. Meeting someone who writes from the same place is a reminder to me that someday, maybe even today, someone who was just diagnosed (or had their child, parent, partner, or friend be diagnosed) will read this. I hope that what I have written can ease your fears and help you to know that you WILL get through this. There is no such thing as “I don’t know how you do it” or “I could never get through it” – because people who never expected to find the strength DO every day.

And on that note, future reader, if you find yourself needing a person to talk to, ask questions, or vent to, don’t hesitate to reach out to me. I relied heavily on other Hodge rockstars and Hodge mommas to get me through – and learned many tips and tricks along the way that my onc and nurses might not have been familiar with (we *are* a rare-ish cancer after all!).

Up on tap for the next few weeks are a few papers for grad school (including a paper/presentation on Imerman Angels – spreading awareness about this fantastic one-on-one cancer connection) and a slot on an “expert panel” about young adult cancer awareness at my alma mater where Sam and I will speak with college students about our experiences of being sick in our final years of school and shortly after college graduation.

Be well, dear readers.