Resolutions

Exactly four years ago today I woke up, after ringing in 2006 with fondue and a few glasses of champagne at a friend’s house, to horrible stomach pains. What at first felt like the flu turned out to be the first symptoms of ovarian cancer, eventually diagnosed in May, and treated successfully throughout the rest of that year.

New Year’s Day always brings back those memories, and also reminds me how lucky I am to be healthy and happy at the dawn of another year. This holiday is also a particularly painful time to be single, and I’m reminded of that each year too as couples around me kiss in the new year on tv and at celebrations closer to home.

It is with both of these thoughts in mind that I resolve this year to finally make progress on two goals I have had for some time now. They are:

1. To find a way to serve single people who are dealing with cancer.
2. To write a book about my experience as a single person with cancer that might help others in the same boat.
   

Both goals are highly attainable, and progress has been made, but it has been slow. I am sharing the goals in this column to ask you to hold me accountable. By so publicly promising, after years of moderate progress, I hope to jump-start the process with the help of a strong support network with a vested interest in seeing these goals to fruition. There are many ways you can help:

If you are a single person who has had cancer, I want to hear from you. Your story could inspire someone, and you can share what services would be helpful to you as you navigate this experience. Complete the survey sponsored by the i2y Foundation and Imerman Angels here.

Send thoughts, ideas or just encouragement in the form of comments on this blog or email to: asinglecell@gmail.com. Check in occasionally and ask how things are going. This will remind me that I better have something to report when someone asks. I will also share an update each month at the end of my column. Short excerpts from past columns will be published in a book from Planet Cancer coming out this spring. The columns will likely be the basis for much of my book as well. I have been writing about living with cancer as a single person for almost three full years now, so there is lots of great content there. Let me know your favorites, or share topics you WISH I’d cover.

Let your favorite cancer organizations know what special support you might benefit from as a single person. There are lots of great organizations already out there serving the cancer community, and I feel no need to reinvent the wheel. If this population can be served through joining forces with existing organizations like i2y, Imerman Angels, MyLifeLine.Org, Planet Cancer, First Descents, Voices of Survivors and others, that is ideal. If eventually, a separate organization becomes necessary, that’s fine too. Help me figure out how to best reach single people and get you what you need.

I am planning to put together a dream team of single survivors to help me get this going this year. I know I can’t do it alone. I was lucky enough in November to connect with so many amazing people from the Young Adult cancer community and I will be calling upon them as well.

I hope you will make some resolutions this year as well. Instead of the same old ones about losing weight and saving money, be creative. What do you really want to do in 2010? Now is a great time to reflect and put some goals on paper. Share them publicly and ask the people in your life to support and encourage you to reach them.

Inspiration

I had the privilege of spending two amazing days with 130 members of the LIVESTRONG Young Adult Alliance in Austin, Texas recently. These admirable individuals and organizations are doing amazing work for those affected by cancer and their loved ones, particularly those 15-39 – seventy thousand of whom are diagnosed each year.

Kudos to the Lance Armstrong Foundation, and CEO Doug Ullman, for once again seeing a need and acting to meet it. By creating this coalition to improve the survival rates and quality of life for young adults, they are helping to fill the gap in care that can often leave this group dangling between the worlds of pediatric and adult oncology, making it difficult to know where they fit.

The Alliance formed three years ago with the development of a Progress Review Group (PRG) - a call to action, basically – which still guides its work. Four task forces do the main work of the Alliance in-between annual meetings: Science, Membership, Standards of Care and Awareness. Through these work groups, the Alliance conducts research, brings new members into the group, helps raise awareness about cancer prevention and services, and shares information about the latest science-based cancer research and treatment options.

The two-day conference consisted of keynote presentations by Drew Olanoff of Blame Drew’s Cancer and Adam Garone, founder of Movember an organization encouraging men around the world to grow moustaches during November to raise money for men’s cancers, primarily prostate; breakout sessions on harnessing the power of social media, healthcare reform, and survivorship issues among many others; and task force and brainstorming meetings on a variety of issues from the PRG.

I was so inspired by the people around me. From Drew and Adam, both of whom have pledged to raise upwards of a million dollars for the Alliance, to so many others who are doing so much to help young adults and further the cause of survivorship:

Brad Ludden – the professional kayaker who started teaching kayaking to kids at a cancer camp near his home in Montana as a way to give back, and then discovered that while there are tons of programs for children with cancer, young adults were practically ignored. Thus First Descents was born in 2000 when Brad was only 18. He realized the healing power of the outdoors and the confidence that can come from paddling a class III rapid or scaling a rock wall, and tons of young adult survivors have benefited from his vision ever since.

Marcia Donziger – struck by ovarian cancer at age 27, Marcia went in for surgery to remove a cyst on her ovary, and woke up to discover that her doctor had performed a complete hysterectomy when he discovered cancer throughout her pelvic region. Married at the time and trying to start a family, Marcia was devastated, and her marriage eventually ended as a result of her diagnosis. Marcia remembers how difficult it was to keep in touch with friends and family about her treatment and condition, and being overwhelmed by the number of calls she received during that time. Inspired by another cancer patient who used a website to keep people in the loop, in 2006 Marcia founded MyLifeLine.Org providing free websites to cancer patients so they could easily keep their loved ones informed about what was going on with them and get support during treatment.

Matthew Zachary – diagnosed with brain cancer at the age of 21 while still in college, this concert pianist and composer lost the use of his hands for a time during treatment – a devastating blow to his future career plans. At the time of his diagnosis there were few resources for young adults living with this disease, and in 2004 Matthew founded Steps for Living, the precursor to i2y - I’m Too Young for This Cancer Foundation, an organization that connects young adult survivors with resources, produces a weekly online radio program called the Stupid Cancer Show, and serves as an advocate for the AYA (Adolescents & Young Adults) community primarily through the harnessing of social media.

Heidi Adams – learned she had cancer when she was in her twenties, and as she navigated treatment, she saw very few others who looked like her. Most of the chairs in the chemo room were filled with silver-haired grandparents who told her she was too young to have cancer. When a thoughtful nurse introduced Heidi to two other young adults in treatment, they gravitated toward each other like flies to honey, sharing their frustrations, struggles and encouragement. Both of Heidi’s lifelines relapsed and died from their disease, and Heidi started Planet Cancer in their memories. The organization provides an international network for AYAs through a social networking website, retreats and a soon to be published book.

Jonny Imerman – lost a testicle to cancer at age 26. While fighting cancer, he received tons of support from family and friends, but longed to talk with someone else who had been through what he was going through. He wanted to ask for advice from someone who understood what it was like to have testicular cancer at such a young age. In 2003, he founded Imerman Angels to connect cancer “fighters” with cancer survivors who were like them. The organization strives to match patients based on age, diagnosis, geographic location, gender and even religion for those to whom that is important.

I have known some of these individuals for a while, and met others for the first time at this meeting. I benefited from many of these programs or ones like them during my diagnosis, treatment and survivorship, and thank God that these individuals were inspired to do something for this community so their services would be around when I needed them. I often say that Lance Armstrong getting cancer is the best thing to ever happen to those of us who have experienced this disease. He has done so much to advocate for research and funding and to define survivorship. Just being in the LIVESTRONG offices in Austin was inspiring to those of us who participated in this meeting. Seeing Lance’s seven yellow jerseys hanging in the foyer, meeting Kelli Craddock, the young adult guru on staff, connecting with so many others who wear the yellow wristbands not because it’s trendy, but for a deeper reason, was profoundly inspiring to me.

I went to Austin to push my agenda. I don’t necessarily feel the need at this point to start my own non-profit when there are so many already out there doing good work for this population, but I did want to raise awareness about the unique needs of single people who get cancer, and encourage these organizations to do more to serve this audience. I lobbied First Descents, Camp Mak A Dream and Planet Cancer to consider singles-only sessions of their programs, promoted my online survey to better assess the needs of this population, and raised the issue as one that the Alliance should focus more attention on in the future.

My time in Austin was a huge success from many perspectives, and I feel so privileged to be able to be a part of this amazing group. Because the LIVESTRONG Foundation is a catalyst for so much of the work that has helped so many, I want to close with their manifesto, which has been a source of strength:

The Manifesto of the Lance Armstrong Foundation
We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is the Lance Armstrong Foundation.
We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You’re in the fight of your life.
We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.
We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.
We’re about the fight.
We’re your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is the Lance Armstrong Foundation.
Founded and inspired by one of the toughest cancer survivors on the planet.
LIVESTRONG™

Challenge & Support

In higher education, where I have spent my entire career, the principle of challenge and support is employed a great deal because both are so important to the development of students. The idea is to challenge their thinking and ask them to do things that may be uncomfortable, but necessary for growth, but to support them along the way so that they feel safe and know they have someone to turn to. I experienced these concepts recently as a student of kayaking and was reminded just how effective they can be.

I was lucky enough to participate in a program called First Descents, which brings together young adult cancer survivors for a week of adventure – whitewater kayaking or rock climbing – in some of the most beautiful settings in the United States. My session took place in Glacier National Park in northwestern Montana.

Our introductory morning on beautiful Lake McDonald with snow-capped peaks towering in the background, allowed us to get used to our boats and practice escaping from them while upside down. The rest of the week we paddled successively more difficult stretches of the scenic and wild Flathead River, which forms the western border of Glacier NP.

Throughout the week, we were challenged to take on tasks that were frightening to most of us – paddling class III rapids, being upside down in the river in a tiny boat and figuring out how to right ourselves or “eject,” and enduring the elements such as freezing cold glacial water, burning sun and high temperatures or ravenous mosquitoes. We slowly built our skills and gained confidence on more challenging stretches of river with bigger and more exciting water. All of those could be achieved because of the support of a fantastic staff who were there to provide for our needs, teach us the skills to navigate the river safely, and help us overcome any fears that might hold us back.

One of my fellow campers said it best : “This is a cancer camp that’s not about cancer.” While we all knew we shared an experience with this disease, and talked about it informally throughout our time together, cancer was never the focus. Enjoying each other, the great outdoors and the challenge of a great adventure were the cornerstones of this experience.

I have always felt the most centered and connected in the outdoors. The simple pleasure of sitting by the campfire next to a pond with the breeze rifling leaves, and stars blanketing the sky overhead while bats and dragonflies swooped down to the water’s edge to feast on hatching mosquitoes was a highlight for me. Watching others in my group, who might not have as much connection with nature, develop an appreciation for the river and the healing qualities of the water, was joyous.

Water has always held a special place for me, whether swimming or boating on Kentucky Lake growing up, feeling the pull of the surf in the oceans of either coast or paddling on the river either placidly or purposefully through whitewater, there is something about the water that comforts, nurtures and sustains us. Who hasn’t gotten lost staring at waves crashing on the shore, ripples in a lake or water gurgling over rocks in a beautiful mountain stream?

The most beautiful gift of this experience for many is simply being taken away from the grind of daily life, and yes, cancer too, to experience equal measures of tranquility, friendship and adventure in a stunning natural setting. As our staff reminded us before our graduation paddle, we all have only right here and right now. When you are paddling a class III rapid called Bone Crusher or trying to avoid Can Opener Rock, cancer is the furthest thing from your mind. I am so grateful to have had this experience, and that non-profits like First Descents exist to challenge and support us through this journey.

Paddling really can be a metaphor for life. When the waters get rough, and you can rest assured that they will, it is important to keep your paddle in the water and keep moving forward. Inaction can cause you to capsize or worse. Maintaining good balance is important in both kayaking and for a well-rounded life. And being prepared is essential – safety equipment, knowledge and a certain skill level are required for tackling rivers and life. Finally, and most importantly, surrounding yourself with good people who know what they are doing, and are there to help you when you need them most will see you through a crisis on the river or in life.

“The river called. The call is the thundering rumble of distant rapids, the intimate roar of white water, the whisper of wind through tall pines, the music of he night produced by the elemental instruments of wind, rock and water. It is the compelling call of great spaces, of wilderness beauty, of soul-satisfying serenity, inspiration, freedom and wholesome thrilling adventure – a primeval summons to primordial values.” --John Craighead