Wednesday, September 30, 2009

They Do Exist

Tuesday night I felt understood, accepted, befriended, appreciated, like I belonged. And I can only hope that's how everyone else felt as well. It was the culmination of a project I have been working on with my friends at the Helen & Harry Gray Cancer Center (where I am treated and at the hospital that I work at) and I'm Too Young for This!, a national foundation devoted to empowering young adults with cancer.

Throughout my entire cancer experience I have met one woman in the flesh with cancer under the age of 40. No matter what age you are, cancer can be hard to cope with and having no one else in my peer group to turn to didn't help matters. You're not supposed to be sick with a potentially deadly disease at the age of 27 - it just doesn't make sense and it's very hard when everyone stares at you with pity and wonder marveling at how young you are and why you're hooked up to a chemo drip.

I've found online communities to be extremely beneficial during all of this - especially because the language is catered to me, it's full of humor, yet also vitally important information, but it's delivered in a way that's not so ominous and straight-edged as many other cancer support sites are. I've thoroughly enjoyed the Monday night "Stupid Cancer Show" online and its connected me with some very informative factoids and resources. I've connected with other young adults through their blogs and social networking sites, but again, never met someone like me (an otherwise healthy twentysomething who is still living her life with cancer) in person.

So, I approached my friend Val who works at the Cancer Center and asked if we could put something together. She also knew about i2y and the "Stupid Cancer Happy Hours" that they host across the country and was all for doing one in Hartford - so was the Cancer Center's VP - and the rest is history. It was fantastic to get so much support from them and I feel lucky that I'm in a position where I can point out where there may be voids in our cancer program and to know the right people to go to to get them filled. We partnered with i2y and promoted the happy hour to all current and former patients in the 18-39 age group, along with the heavy promotions of the i2y group in the hopes to bring us all together. We built it. They came. And it felt fantastic to be a part of it.

Over the course of the night 25-30 young adults showed up - some currently in treatment, some years in remission, some with their friends, some by themselves. There were other women with buzzed heads and cute hats. Others with the tell-tale lady lump in the chest where their port lies. The conversations were so easy, so comfortable because you didn't have to explain yourself away - we were all there for the same reason - to celebrate our lives, dish about stupid cancer (and anything but), learn about each other's experiences, get inspired and of course, have a beer.

I met a young guy who had six biopsies before he finally got diagnosed. He has 43 radiation treatments to go and is working full-time as an investment banking manager. Like me working the IV machine, he stamps his own parking ticket at the Cancer Center valet stand.

I met two other Hodgkin Lymphoma survivors: one four-and-a-half-years in remission, the other one year ahead of me. It was so fascinating to hear what they went through, how eerily similar, yet so different our experiences were. One was told she couldn't eat any raw vegetables for fear of the germs they could carry, while I on the other hand have made that my diet mainstay! One begged for the port - in fact switched oncologists until one would give her one - while I shied away from it until I couldn't bear the vein pain any longer.

I met twenty- and thirty-something women with breast cancer, all positive, spunky, cracking jokes about puking, losing hair, going out.

I met another young guy who has undergone three brain surgeries and just recently discovered that a fourth malignant tumor has now grown. He traveled all the way from Danbury to meet others like him.

I met some who have ridden the cancer wave from pediatrics to young adulthood - the disease creeping in and out of their lives.

I met a man who was told that it was a fungus on his head caused from his hockey helmet (not cancer). I met a woman who took four months worth of antibiotics (of course, not cancer) before it was finally her dentist who diagnosed her with lymphoma.

It was such a breath of fresh air to see young spirits fighting against all of this and able to be out in the world, to be positive, to know that it's still okay to meet new people, to be at a bar, to snack on nachos and pigs in a blanket even with the dreaded cancer we all hold closer to us than we probably would like.

The difference in talking with these people was that they get it. I love my husband, my friends, my family, my doctor, the older patients that I've met, but no matter how much they try, they can't fully grasp what it's like to go from being a blonde-haired, successful, running, hiking, biking, carefree twenty-something with big plans for the future to a bald, weak, lethargic twenty-something fighting my hardest against an invader inside my own body. I hope those people that I love never have to understand what it's like. But for those of us who know the realities, it's nice to be able to talk to each other without abandon, to not have to worry about offending someone or making them feel uncomfortable. I could look these other young adult cancer patients in the eyes and without saying anything, completely understand each other's mix of pain and elation to be standing there in that moment. One woman thanked me repeatedly for helping to make the event happen, saying that it was exactly what she needed. It felt so incredibly good to be able to turn something as awful as a cancer battle into something positive for myself and hopefully many others to come.

The cause to advocate for young adults with cancer was illuminated more than ever for me. It's so important for everyone my age to realize that unfortunately, yes, we can get cancer too, and when we know something isn't right we need to be persistent, listen to our bodies and take care of ourselves. How I got to be a stage 4b cancer patient I will never know, but I only hope that others will learn from my story and pay attention to the warning signs. We tend to think we're invincible, we can take on the world. No time for sickness, for naps, for pain ... just push through. We've got careers to conquer, charities to start, countries to visit, families to create. Who has time to be sick? Well, it all comes to a screeching halt when you're standing in a dog park with an empty leash in your hand and the voice on the other line of your Blackberry tells you you have cancer and your life changes forever.


  1. Hi Karin,

    Congratulations on a successful - and important - event. What a beautifully written account of both the gathering and what it's like to be 27 with a cancer diagnosis. This is something I know far too well. I, too, was 27 when I was diagnosed with Hodgkin's Disease more than 15 years ago.

    My road has been VERY atypical. I'm just now celebrating 4 years in remission, following a clinical trial bone marrow transplant.

    One thing we do have in common is our "babies." Mine is a Bichon named Murray. :)

    When I was initially diagnosed, the internet was in its infancy, so I wasn't able to benefit from I2Y or other online tools. That's partially why I launched

    I'd love to connect with you, if you are interested.

    Wishing you all the best,

  2. This event, was by far, the most rewarding event that I have been involved with in my 7+ years of working in oncology services. Thank you Karin (and Jack) for letting me be a part of this and I hope this is a springboard that provides support for other young adult cancer survivors for many years to come. Much love to you, Karin - I'm rooting for you!

    xoxo, Val

    you are sure lucky to have a Super Hotty Cancer Warrior/Supporting Husband (hi Craig!!! - I hope you got the chicken wing stain off your shirt!)

  3. I'm honored to have met you that night, Karin. My sister just finished a round of radiation, which brought cancer intimitely into my life. Keep on rocking. This was a great event! Hope to see you again. Does Val ever invite you to Finn's!?? Peace, Shawn

  4. you do what i only talk about.
    you are incredible

  5. Hi Karin,

    Even in Holland your wonderfull writing is being read ;-) Not forgotten, come on champ! Love, Eelco