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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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 ›
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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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.
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.
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I have developed a lot of superstitions after getting sick. I never say that I’m cured. I bristle when I think about the word “remission”. I never let my brain dwell too hard on relapse. If any of these thoughts cross my mind, I feel like its going to come back. You see this in those with OCD – thinking that mere thoughts can cause large scale actions.
So when I thought I was relapsing, I did what made sense to me. I didn’t tell anyone.
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I’ve been holding off on this post because of a particularly nasty relapse scare last week – even people who had lymphoma occasionally have lymph nodes swell to the size of marbles and it’s still OK.
So now, after what have been the worst week of my life, things are ok.
It’s been over 6 months since my last chemo. That’s how I mark my remission. There’s no real way of knowing when the cancer cells finally died off in my body, so that last chemo makes sense. I’ll be celebrating by chatting with Kelley Tuthill, herself a 5 year young adult breast cancer survivor, from WCVB-TV Boston (Channel 5).
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Are you a young adult cancer survivor between the ages of 15 and 40ish living in the Greater Boston Area? Join us TONIGHT for the Stupid Cancer Happy Holiday Hour at Joe Sent Me in Cambridge (Davis Square) from 6-9. There will be a live band, half off apps, a free dessert table (Lyndell’s cake – that’s incentive enough to go!), plus some fantastic cancer’d folk.
Support cancer survivors in their 20s and 30s and come out to an official “Stupid Cancer Happy Hour”, a different kind of social support mixer brought to you by the I’m Too Young For This! Cancer Foundation, the nation’s leading grassroots organization for young adults affected by cancer. Come one, come all to chill out, make friends and hang with people who don’t care whether you have one boob, one ball, two ports or even a hyperactive platelet count.
Food, fun, drinks and overall good company are in store for a meaningful evening of community, empowerment and hope.
Stupid cancer! Survivors rule!
Please pass this on to anyone fighting or surviving this disease who needs a little peer support. Getting cancer in your late teens, 20s, or 30s is extremely isolating – no young adult should have to go through it alone without people who know what you’re going through! We have Stupid Cancer Happy Hours fairly regularly, so if you can’t make this one, join the Facebook group to stay up to date with the next event!
Christopher Hitchens passed away yesterday from pneumonia as a result of his treatments for esophageal cancer. Many people toe their party lines; self proclaimed radicals are often not too radical at all. Hitchens splayed himself across the political landscape in a way that was both completely unreasonable, yet entirely logical. He and I disagreed on many things, but I found myself drawn to his reasoning no matter what the topic.
A few months ago, he wrote an essay for Vanity Fair about his cancer. I’m the ultimate consumer of cancer essay, and this one touched me like none other. I am finding it particularly poignant this week after “finding my voice” to speak about my experience in front of 30 people who I have shared a classroom with for a semester who had no idea.
What do I hope for? If not a cure, then a remission. And what do I want back? In the most beautiful apposition of two of the simplest words in our language: the freedom of speech.
I am so sorry that you did not get that remission, Christopher. The world has truly lost something real.
Thanksgiving. Like many, I will spend the day gorging myself on way too much food, planning out my strategic holiday shopping attack, and beginning what will be a very busy month of Christmas movies and music (I’m a Jew who collects Virgin Mary things only semi-ironically, what can I say?). But more than any other year, I am spending today reflecting on the things I have to be thankful for.
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