Some Favorite Recent Articles:
Cancer: Fighting Words - New York Times, August 27, 2011
Music's Soothing Notes Can Help Cancer Patients Chill Out - Shots, NPR's Health Blog, August 10, 2011
Eve Ensler Reframes Cancer - Empowher.com, July 1, 2011
Nurse and Patient, Sharing Laughter - New York Times, December 1, 2010
Miss Manners and the Big C - Vanity Fair (by Christopher Hitchens) December 2010
'Too Young for Cancer' and Demanding Action - Wall Street Journal, November 9, 2010
Unanswerable Prayers - Vanity Fair (by Christopher Hitchens) October 2010
She Who Has a Why's Top 10 Lists:
Elissa's Top 10 Resources for Young Adult Cancer Patients and Survivors
10. First Descents
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.
9. Imerman Angels
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.
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.
7. Cinco Vidas
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.
6. Fertile Hope
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.
5. The New York Times Wellness Blog
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.
4. The Ulman Cancer Fund
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.
3. Smith Farm (and Commonweal)
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.
2. Planet Cancer
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.
Elissa's Top 10 Books for Cancer Patients and Their Supporters
10. It's Not About the Bike by Lance Armstrong
One of the first books I read after diagnosis, Lance's book didn't move me as much as some other narratives have. And it's hard for me to look at his cancer experience in a vacuum (I mean, he dated an Olsen twin - that's sorta antithetical to the kind of role model that I'm looking for). Still, as author Kairol Rosenthal writes, "Since Lance's balls and bike became public, we no longer speak about cancer in hushed tones." Lance Armstrong's contribution to movement building for cancer education, awareness, research, and treatment has been critical to all our well-being. And his LiveStrong Foundation and network can trace much of their success to the popularity of his book.
9. Kitchen Table Wisdom by Rachel Naomi Remen
This book was a gift from my dad's friend Arnie, and has been a very powerful resource as I continue to explore the many definitions and means of healing.
8. Illness as Metaphor by Susan Sontag
In a subtle way, Illness As Metaphor provided my foundation of understanding of how my illness is perceived by others, and has given me some context for explaining why I find the romanticized cancer gaze and narrative most prevalent in our culture, so personally troubling. It was also a really well-written, informative book.
7. Crazy, Sexy, Cancer Tips by Kris Carr
Full disclosure: I haven't read all of Crazy, Sexy, Cancer, or seen the entire film, or read every post on Kris Carr's blog. But Crazy, Sexy, Cancer seemed worthy of the list because I like her message and means, and deeply admire her spirit and approach. Most importantly, Crazy, Sexy, Cancer is a source that many people deeply relate to, especially younger women.
6. Model Patient: My Life As an Incurable Wise-Ass by Karen Duffy
My friend Barbara gave me this book by former MTV VJ, actress and model Karen Duffy, when I was first diagnosed. It was the first book I read about a young woman facing a serious illness, who handled it with her own brand of humor and dignity and it made me feel hopeful that I could do the same.
5. Life Over Cancer by Dr. Keith Block
Dr. Block created the Block program for fighting cancer for people who are at different places along the cancer continuum. It's a comprehensive plan that patients can implement themselves, incorporating holistic principles without asking patients to chose between "conventional treatment" and other approaches. You don't have to follow the plan by rote - you can glean some of the great lessons to incorporate into your own plan. I have found it valuable in this way.
4. Everything Changes by Kairol Rosenthal
I've only just finished this book, which has been regularly recommended since my diagnosis but I hadn't picked up. It is #4 on this list, but in terms of books that provided emotional catharsis, it is my #1. There were several times in the process of reading it that I had the surreal feeling that somehow Rosenthal had read my journal, and had to confirm that I was not the subject of a particular case she was writing about. That is precisely why her book is such a gift: I heard my own voice and my own experiences reflected in so many different aspects of her book that it made me feel less lonely, understood, heard. That's a pretty big lift for a book, but time and again, young people with cancer express just that after they read Everything Changes.
3. Cancer as a Turning Point by Lawrence Lashan
A wise woman has often said to me during these past few years, that, for better or worse, I will never go back to being the person I was before I had cancer. That is an essential truth of this experience which is mainly about the emotional and mental consequences. Cancer as a Turning Point focuses on these aspects of health. I think this book is one of the best for caregivers and loved ones, as well as for cancer patients, and is one of the best resources for utilizing the mind-body connection to fight cancer.
2. Choices In Healing by Michael Lerner
One of the worst moments in my cancer journey was when I asked my oncologist at GW what else I could be doing to make myself healthier besides chemotherapy and radiation, and he said, "nothing." This book is the antidote to the sting of his reply. It's the foundation for alternative and supplemental healing approaches and choices.
1. Anti-Cancer by Dr. David Servan-Schreiber
I stumbled upon this book when I was at Borders buying a gift. There it was - starring at me from a shelf. I picked it up, began reading and felt like it was fate. I have used it somewhat like a textbook since then, trying to outline a blueprint for the lifestyle changes that likely reduce risk of cancer and slow it's growth. Anti-Cancer was a gateway to all of the other resources I have explored since, partially by dint of being the first book that introduced these topics to me, but largely because it is such a perfect explanation of complex science, distilled for lay-people.