Saturday, August 21, 2010

Elissa's Top 10 Resources for Young Adult Cancer Patients and Survivors

I love a good list. I am a list-maker by nature, and have become more of one since my first cancer diagnosis. I think it helps me create order in an often-chaotic situation. Lists also give me an excuse to use post-it notes, my favorite office supply product.
After coping with cancer for nearly 4 years, I am still constantly discovering new resources. But given that I want my blog to be a useful resource in itself, I decided to create this top-ten list of resources available to young cancer patients and survivors. (And a top-ten list of cancer-related books are coming soon!)
These books, websites, places, spaces and organizations, will hopefully help someone else have all the information that it's taken me a few years to gather, in one place.

Top 10 Resources for Young Adult Cancer Patients and Survivors

First Descents, created by 18 year old professional kayaker Brad Ludden, is an organization that helps young adults cope with the emotional effects of cancer and empowers them to regain control of their lives by experiencing outdoor adventure therapy through kayaking, rock climbing and other outdoor adventure sports. Their programs are free and while I have yet to participate, I have heard amazing things about them from other survivors.
This organization was founded by Jonny Imerman who was 26 years old when he was diagnosed with cancer and felt isolated. He created Imerman Angels, an organization that matches individuals coping with cancer, with a survivor who has a lot in common with them - their cancer type, age, gender - so that they have someone to relate to and someone who can illuminate their path ahead. It's a brilliant concept that's benefited many. When I was in remission, I signed up to be a mentor and recently was matched to another young woman, but they didn't want to connect us when they'd heard I had relapsed because they didn't want to freak her out. Which freaked me out. Still, they're a highly recommended resource.
8. I2Y
I'm Too Young for This! is a very comprehensive website/support system that can provide information on everything from support groups and networking events in your area, to financial resources and much more. I have to admit that their branding always seems too edgy/angry for me. But they are clearly targeting a particular audience and I appreciate their goals. This has been the number-one resource for many of my fellow young cancer patients, and they provide some in-person equivalents to the online community that I have found elsewhere.
Cinco Vidas Inc. was founded by Britta Aragon, someone who I've gotten to know a bit through the young adult survivor community. The site provides information to help consumers make smart commercial purchases. Everyone can benefit from this site - those living with cancer and those trying to avoid it. What sold me most was one item in particular - the Ingredients to Avoid card. I printed it out, keep it in my wallet, and use it when I'm buying anything that's going on my skin, used in cleaning my home, or coming anywhere near my food. It's an easy and simple educational tool that I hope has made a difference for me and might make a difference for you, too.
Now a part of the Livestrong Network, Lance Armstrong's amazing gift to the world and itself an invaluable resource, Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility. When I was diagnosed at the age of 23 I could not believe that my doctors had NO answers to my very serious questions about how treatment would impact my fertility. In fact, those early experiences first opened my eyes to the reality that young adults experience cancer differently then older and much younger individuals, and that there is a tragic gap in research and information available for this age group. No doctor, nurse, social worker or any trained professional could answer any of my questions before I found the amazing people at Fertile Hope. My debt of gratitude is enormous to them, and I have told every doctor I've encountered since, to please look to them as a resource so that the patients after me don't have to experience my despair at the lack of information around this critically important issue.
While not all of the posts on this blog are cancer-related, let alone relate to my cancer experience, several posts over the past few years have been like a hand reaching into stormy waters and pulling me out. They left me crying, laughing, and consistently made me feel understood. It's compelling reading for anyone, and required reading for people trying to find out what "wellness" means to them.
The Ulman Cancer Fund for Young Adults was funded by Doug Ulman, a young survivor. The goal of the fund is to provide comprehensive resources for young adults facing cancer. They also support and provide some infrastructure for Young Adult Cancer Survivors (YACS) groups which are beginning to emerge in many cities, including Washington DC.
The Smith Farm is a center for the healing arts. They provide classes, workshops and community space for integrative and healing arts therapies. I have only attended several sessions, but am amazed and excited by the offerings at Smith Farm and feel so fortunate to live mere blocks from one of only two centers nation-wide quite like this one. I learned about the Smith Farm from my friend Jackie, who worked on prostate cancer prevention here in DC. We went together to hear a lecture from Michael Lerner, the founder of Commonweal and author of Choices in Healing. His lecture was a life-changing experience (as was my later coincidental encounter with him which was a continuation of the extraordinary experience) that gave context to the many disparate theories and bits of information that have informed my ever-evolving philosophy on healing.
Planet Cancer was the clear front runner here, for good reason. While some of these other resources are arguably more organized and offer a wider variety of services, this is the Elissa-specific list, and Planet Cancer has provided what I've needed most in the way of my extra-medical cancer-needs. Planet Cancer is a social networking site for young adult cancer patients, survivors and their caretakers. Because I have a type of cancer that disproportionately impacts younger adults, and is relatively unusual, it felt nearly impossible to find an in-person support group that felt like I'd have the shared experience (type of cancer and age, mainly) required to maximize such a group. That same in-person disadvantage became an advantage on Planet Cancer: the Hodgkin's discussion group and threads are incredibly active because of the proportion of Hodgkin's patients around my age. Planet Cancer gave me what no other source could have; what I've needed the most: other individuals experiencing similar cancer journeys who make me feel both emotionally understood and can also answer my many practical medical questions. I have learned so much about how to effectively advocate for myself, how to cope with life outside of the treatment room and hospital, and really important specifics about my side effects, tests and treatments that no doctor told me, but my peers did. It's been simply invaluable to me, and I would recommend logging on to this secured site to anyone who needs a community or an answer.
1. And, as cheesy as it is, my most important resource of all isn't a website, a book, or any formal organization. It's community, friends and family. It's all of you.


Logical Mommy said...

That is a great list and I'm glad you found all those things!

Just wanted to mention that I did get myself tested as a marrow donor. Who knows--with our similar heritage maybe I could be a match for you.

Elissa said...

Thank you, Molly! If not my match, you could be someone's! Thank you for getting registered. Hope you and your boys are having a fun summer.

Emily Pearl Goodstein said...

what a great post! i love how personal it is. thanks for sharing this...

Toby said...

I'm just sitting here minding my own business, watching a rerun of "Who's the Boss" and you go and make me cry. Why you gotta be that way? Oh, and that list of things to avoid sounds great. Gotta protect that kiddo of mine

Britta said...

Elissa, thank you so much for including me in your top 10 - I am honored and so happy to hear that Cinco Vidas has helped you in some way - especially about what to stay away from and how to lower your exposure to chemicals! thanks for sharing all these great resources! All the very best, xoxo Britta

Now What said...

Hi, what a great list of resources you've got.

The Now What Website is another great resource for young people living with cancer. It’s specifically designed for young people who have cancer, have a family member with cancer, or family member who has died from cancer. It provides information and support through stories, blogs and forums.You can take a look at it here: