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™

Loneliness

Most of the time I am very satisfied, even ecstatic, about my life as an independent, single woman. My lifestyle allows me to do the things I want to do when I want to do them. If I feel like staying in bed all day on a cold, rainy Sunday afternoon reading a book, I can do it. When I want to jump in my car or hop on a plane for a fun weekend get-away, only my budget might prevent me. There are no demands from a partner or children that get in the way of my needs. I feel lucky to live in a time and culture that allows me the freedom to live independently, and I make the most of that freedom to live the kind of life that I want to live.

Ninety-five percent of the time, I am completely happy with my life. However, the five-percent can be really difficult, because there are those times when no one relishes being alone – when the toilet overflows, the car breaks down or when you get sick. I also tend to feel really alone during either times of great celebration or mourning – usually on a large scale: Princess Diana’s death, 9/11, when my candidate wins an election or the beginning of a new year. These are times you want to share with others.

Whenever I read a Jane Austen book, or watch a movie about a different period in history, I am often thankful to live when I do, in a time when women don’t have to marry in order to gain protection and financial security, when I am free to work, dress and live how I choose. I also see the drawbacks of modern-day culture as well. As technological advances allow us more virtual connectedness – playing chess with someone in China or teleconferencing with business associates around the globe – it can also sap meaningful face-to-face connections.

I was recently with a group of friends at brunch and looked up to see most of the people around the table furiously using their smart phones rather than engaging the group in front of them. I admit to loving my iPhone for allowing me instant access to all kinds of great information and entertainment, but it drives me crazy when updating people in the virtual world takes priority over the warm-blooded human being sitting in front of you.

As more of us choose to live independently because our finances allow it, remaining single longer, divorcing more readily and having fewer children is becoming more and more common. These trends are also causing more isolation than at any time in human history. Primitive cultures forced people to live and work together in order to survive. I wonder about the emotional cost of our modern culture, and what physical outcomes can arise from loneliness and disconnection.

Dr. Dean Ornish (1998) stated at the beginning of his book Love & Survival: “Our survival depends on the healing power of love, intimacy, and relationships. Physically. Emotionally. Spiritually. As individuals. As communities. As a culture. Perhaps even as a species.” (p. 1) Dr. Andrew Weil (1997) also postulates about the communal nature of human beings meant to live in families, tribes, and communities, and says that when we lack those connections, we suffer.

Perhaps loneliness and lack of connection can actually contribute to poor health. It certainly is difficult to be alone when we are sick. Whether it’s a sore throat, the flu or cancer, not having someone at hand to take care of us when we’re not well is a big fat bummer. I have long been interested in supporting single folks who are dealing with cancer. While there are a multitude of resources for cancer patients, there is nothing specifically for those of us going through it alone, and that number seems to be rising as cancer strikes at younger ages, while many of us put off marriage until later.

I recently conducted a survey of single cancer survivors to gauge the needs of this audience. Mostly the results weren’t surprising; the issues you would expect floated to the top: dating anxiety, body image, loneliness, fertility problems and a desire for more support.

One man said, “I still struggle with what to tell anybody I meet, especially women I’m romantically interested in, about my medical history. I had a scar revision to replace my original thyroidectomy scar that looked like something on Frankenstein’s monster. Even though the new scar is fading, I’m still conscious of it everyday, and I make sure it’s covered up by whatever shirt I wear.”

More than 75% of respondents reported that connections with other cancer patients who were like them were the most helpful during treatment and afterward. It’s not as lonely when you can share with others who have gone through it or are in the same boat.

The stories that were shared broke my heart, and rang true to my own feelings in many cases as well. Many single survivors feel like damaged goods with their weird scars and other bodily impacts of cancer, loss of fertility in many cases, and sometimes crushing debt. Single people might already feel as if their status were based upon being flawed in some way, and cancer certainly multiplies that feeling. “Who would choose to be with someone who might not live that long or can’t have kids,” we think?

One woman shared, “I am now five years out and finally beginning to feel normal again, but in five years, I have not been on one date. I want to get married. I want a boyfriend. I just want to go on a date. But for now, I am a 42-year-old spinster who got breast cancer at age 37, lost her chance for children, and has yet to meet the man of my dreams.”

Some report serious financial issues or lack of health insurance, and having to move back in with their parents for help, and a significant number shared how overwhelmed they felt having to make so many huge decisions on their own.

One woman said, “I often don’t feel I have much to live and fight for. So many times you hear people battling cancer say things like, ‘If it weren’t for wanting to be with my spouse, I don’t know how I could have done it all.’ Or people want to survive to be there for their children. If my life ended, it wouldn’t really be a big deal to anyone but my mom, so motivation is pretty hard to come by when you’re faced with side effects, stress, anxiety, bad news, uncomfortable tests, horrid procedures, putting your life on hold, debt and never having any time or money or energy. And all for what?”

Loneliness can be so damaging, and not just for those of us facing serious illnesses. My hope is that we don’t continue on the unhealthy path of foregoing real human connections. They are truly what make life worth living.

If you know a single cancer survivor who might want to take the survey, send them here.

Citations

Eight Weeks to Optimum Health (1997), Random House, Andrew Weil, M.D.

Love & Survival: Eight Pathways to Intimacy and Health (1998), Harper-Collins, Dean Ornish, M.D.

Know Your Body; Know the Symptoms

The title of this column is the theme of this year’s Ovarian Cancer Awareness Month. Each September teal ribbons are worn to remind us that ovarian cancer is the deadliest of all female reproductive cancers, and a leading cause of death among women.

Even in its early stages ovarian cancer has symptoms, but they are subtle, and common to many other diagnoses. One of the main reasons ovarian cancer is so deadly is that the disease often goes undiagnosed until it is advanced. However, research indicates that 95 percent of women diagnosed had symptoms and 90 percent experienced them even with early-stage cancer, so there is hope that with awareness, more lives can be saved. But most women – 75 percent – are still diagnosed in advanced stages. Be persistent with your doctor if you feel that something is not right. You know your body better than anyone else. Insist on further testing if you are having symptoms. What can you do to help spread the word?

Suggestions:

· Tweet or use Facebook to share this link to more information, and/or a symptoms list on September 4 or anytime during Ovarian Cancer Awareness Month.

· Participate in a march or other event in your area. Google “ovarian cancer events” to find fundraisers and events in your area during September. I will be speaking at one in Denver on September 12 – The Teal Soiree, hosted by the Cheryl Shackelford Foundation. If you live near Denver, please join me.

· Write your political representatives to encourage them to fund ovarian cancer research and/or your health insurance company to ask them to cover annual screening for the disease. Many mistakenly believe that a pap test will detect ovarian cancer. Actually, it screens only for cervical cancer. There is currently NO definitive test to screen for ovarian cancer. Research funding will help speed up the process to develop one.

· Email your friends or ask them in person if they are familiar with the symptoms of ovarian cancer. You can obtain symptom cards from the Ovarian Cancer National Alliance or a local ovarian cancer organization to share with loved ones.

· Donate to an ovarian cancer research or advocacy organization. They know the most crucial needs and can direct your funds to those areas. Donate in honor or memory of a friend with the disease. It will be the best gift you could ever give them.

In 2007, the Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society, with significant support from the Ovarian Cancer National Alliance, formed a consensus statement which follows.

"Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:

• Bloating
• Pelvic or abdominal pain
• Difficulty eating or feeling full quickly
• Urinary symptoms (urgency or frequency)

Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.

Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.

Several other symptoms have been commonly reported by women with ovarian cancer. These symptoms include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities. However, these other symptoms are not as useful in identifying ovarian cancer because they are also found in equal frequency in women in the general population who do not have ovarian cancer."

I was lucky. My diagnosis came after severe pain and a trip to the emergency room, and luckily, it was caught at an early, treatable stage. Most symptoms are far more subtle and persistent. If you knew that sharing information or sending a link to this column could save the life of a woman you love, would you do it?

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

Beyond Surviving

“Human beings are designed to survive.” That is what I learned in a recent seminar that I participated in. The message was basically that our instincts would guide us in fight or flight or other responses needed to survive whatever situation we find ourselves in. On one side of the coin, this is a comforting thought—survival is the norm, and we will take action instinctively when our safety and well-being is threatened. It is nice to know we don’t have to stop and think in the face of danger, but just trust our automatic reactions. But in another sense, “surviving” is kind of a mediocre standard to set for our lives.

After my last column on survivorship, I was talking to some other cancer survivor friends who question the widespread use of the term as somewhat limiting. Hmmmm. I had never thought of it that way. While survivorship can be empowering as I hypothesized in May, it can also be limiting. When you are fighting for your life, surviving is certainly optimal, but once the immediate danger has passed, don’t we all yearn for something more?

I love the Sugarland song titled just that—“Something More.” The lyrics go: “There’s gotta be something more, gotta be more than this. I need a little less hard time, I need a little more bliss. I’m gonna take my chances, taking a chance I might find what I’m looking for. There’s gotta be something more. I could work my life away, but why? I got things I wanna do before I die.” Listen to the song here.

It is so easy to become complacent in life, accepting the challenges as they come, and “surviving” on a day-to-day basis. It reminds me of the first line from the book Good to Great by Jim Collins, “Good is the enemy of great.” So many of us settle for good, when our lives could be great, even extraordinary! Why? Because we are designed to survive. Taking the chance, as the lyrics mention, entails risk, and that could threaten our survival. At the very least, it feels dangerous to step outside the comfortable box we have created for ourselves.

My previous column on Security dealt with this theme. My cancer diagnosis freed me in so many ways from needing the stability and security I had previously pursued. Once you face your own mortality, and recognize that there is really no such thing as security in life, you realize that taking the risk to do something new can be the most rewarding part of your brief existence. This is true even if you fail miserably. After all, you will survive.

I am drawing on the wisdom of many others in this installment, but why would I try to say it better than George Bernard Shaw did: “This is the true joy in life … being used for a purpose recognized by yourself as a mighty one … being a force of Nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy … I am of the opinion that my life belongs to the whole community and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die. For the harder I work the more I live. I rejoice in life for its own sake. Life is no brief candle to me. It’s a sort of splendid torch which I’ve got to hold up for the moment, and I want to make it burn as brightly as possible before handing it on to future generations.”

Most of us are so afraid to live this way. In fact, we are afraid of everything: snakes, lightning, rapists, terrorists, tornadoes, embarrassment, failure, success, vulnerability. I’m not suggesting that these things aren’t scary; only that they will be there whether we spend time being afraid of them or not. A Course in Miracles teaches us that we can live in fear or we can live in love. Which do you think is more fulfilling?

I used to spend a lot of time worrying about what other people would think of me if I did such and such—wore a certain outfit, said something stupid, behaved in a certain way. I feared judgment for the fact that I was still single, that I didn’t fit society’s ideal body size, that I don’t make a lot of money. Then I realized that what other people think of me is none of my business, and that it was silly to worry about that anyway. When it no longer mattered to me what others thought, I could feel free to share myself more openly through writing this column, having genuine and meaningful conversations with others about what really matters, and putting my feelings out there even if they weren’t reciprocated.

Living this way entails taking risks, but it offers tremendous rewards in return. Surviving is certainly better than the alternative, but what about something more? If you knew you couldn’t fail, what would you do? Can you believe that anything is possible?

Survivorship

Survivorship is a relatively new term in our collective vocabulary. It represents both a positive direction in medical advancements, and at the same time, a host of new long-term impacts from traditional cancer treatments as people are living longer with the disease. My friend Matt just published a great article about this on the Huffington Post.

Many people are confused about what to call themselves or others when they are diagnosed with cancer. If you just found out yesterday that you have the disease, are you a survivor today? I say absolutely YES, and many others agree with me. Surviving the diagnosis is nothing to sneeze at, and those initial days can truly be the most difficult part – emotionally, if not physically. Wrapping your head around the idea that your life is now changed forever is no small task. Staring your mortality in the face is scary.

Being a survivor and living strong are empowering. Wouldn’t you rather be called a survivor than a cancer patient or worse, victim? We can borrow some wisdom from other areas like sexual assault or other forms of abuse. Being a survivor rather than a victim is always preferable. The minute you receive the diagnosis, you are surviving cancer, and every day you keep on breathing after that, you will be a survivor. June 7 is National Cancer Survivors Day, and believe it or not, this day has been observed for 22 years now. I hadn’t heard of it until last week, which was, incidentally, my 3rd Cancerversary (May 23).

My friend Ethan Zohn was recently diagnosed with a rare form of Hodgkin's. You may recognize his name as the winner of Survivor Africa. His new status gives a whole new meaning to his moniker as a "survivor." I was always proud of Ethan for the way he played and won Survivor, and for what he did with the prize money - invested it in a non-profit he founded called Grassroots Soccer which utilizes soccer players to do AIDS/HIV education in Africa. I'm sure cancer hit Ethan especially hard since his father died of the disease when Ethan was only 14-years-old. As he has overcome other challenges in his life, I know he will do so with this one as well. Watch him talking about cancer on CBS's Early Show here.

National Cancer Survivor’s Day is an annual, worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be a reality, according to the website.

I met a pediatric neurological oncologist at a 4th of July party days before I was scheduled to begin chemo in 2006. In addition to pumping him for information about my chemo drugs and what kind of side effects I could expect, I shared my awe that he could do his job day in and day out. “Working with kids who have brain cancer must be so hard,” I mused. “Actually,” he said, “it’s way better now than 20 years ago when I started – many of the kids actually live now.”

Wow! Medicine really has come a long way. Many of those kids are experiencing side effects later in life from the toxic chemicals used to treat their illness, but at least they are alive. Survivorship brings up a whole host of new issues for us to focus on, such as fertility issues for young adults, long-term side effects of treatment, emotional issues and financial ones too (all these new medical advancements cost ALOT of money). These are good problems to have because they mean that the “patient” is still alive to have them, but they need to be addressed nonetheless.

I am proud to be a survivor, and whatever issues I have to deal with pale when measured against more time with my family and friends, important work to do, writing something that might help someone else going through a challenge, and great adventures and travel to experience – the joys, and sorrows too, of life. And I can’t say enough about the wonderful people that I have met along the way on this cancer journey. It’s a club that no one wants to join, but an amazing community once you are part of it. Here’s to the survivors!

Thirtysomething With Cancer

Remember the 90s television show Thirtysomething? If you do, you likely are thirtysomething yourself. It was a great show about a group of baby boomers who had lived through the counterculture 60s, and were trying to reconcile that past with their present as responsible adults and parents. I was in high school when it aired, and remember watching and thinking how old thirty seemed. Now, as I approach 40, my perspective has changed a bit.

I heard recently that most Millenials think that the term “grown-up” now applies to 30 and above. To them, it is not just high school and college that are reserved for being young and wild and making mistakes, but their early twenties as well. Adulthood keeps getting pushed further and further into the future by each succeeding generation. We are lucky to have the luxury to postpone adulthood according to our timeline. We haven’t had a great depression, world war or other calamity to force maturity upon us. That may be changing.

There is a challenge facing young adults today, though it isn’t visible and doesn’t get a lot of press. It is cancer. It is the leading cause of death among 15-39 year-olds, excluding homicide, suicide and non-intentional injury. Particularly women in this age group, have a higher likelihood to develop cancer as incidence rates for women are higher starting at age 20, and for those 35-39, cancer incidence among females is more than 80 percent higher than among males. Additionally, those 25-34 face an increased incidence rate of invasive cancer. (Albritton, Caliguiri & Anderson, 2006)

While five-year survival rates have improved significantly for both pediatric and geriatric cancer patients over the past 30 years, they have not for those in the AYA group (Adolescents and Young Adults). There are many factors that impact this, including: lack of regular health screenings and the highest uninsured rate of any age group, as well as delayed diagnosis because younger people feel invulnerable and ignore symptoms, and the fact that cancer is often not suspected for younger individuals by medical professionals.

Luckily, people are starting to pay attention. There are numerous groups now advocating for the AYA community (list at the end of this article), and even a National Young Adult Cancer Awareness Week (in it’s seventh year), April 5-11, 2009. “Consider Cancer” is this year’s call to action for Vital Options International and all the advocacy organization members of the LIVESTRONG™ Young Adult Alliance with an emphasis on encouraging young adults to talk to their doctors, know the warning signs of cancer, understand what types of cancer they may be at risk for, and learn about cancer screening and healthy life style choices.

I never thought it would happen to me, and while I thought I was young to be getting cancer at 36, I now know many, many others who were diagnosed at a much younger age, including one friend who had a complete hysterectomy for ovarian cancer at age 27.

Here are just a few things I recommend to insure a healthier future:

• Don’t forego health insurance. That time between when you are no longer eligible for insurance under your parents (usually 23) and you finally begin to feel somewhat successful in your career can be a struggle financially. On their own for the first time, most young adults are busy navigating retirement contributions, leases, utilities, and new furniture. Health insurance can seem like a logical expense to cut out when you’re young and healthy. It’s not.
• Listen to your body. That strange ache or swelling or weird dry patch of skin could be telling you something significant. Don’t ignore it! The longer you wait to get something checked out, the more likely it is to grow and spread if it does end up being cancer. Being in a new town without a regular doctor, lack of insurance and other “excuses” can prevent you from getting help right when you may need it most.
• Consider disability insurance. If you can’t afford health insurance, disability insurance definitely seems like a needless extravagance, but you are far more likely to become permanently disabled than you are to die from an accident or chronic illness, and if you are insured before any of these problems pop up, then you can’t be denied later, and your rates are also likely to be much cheaper.
• Eat Right. There is more an more evidence that chemicals in processed foods and pesticides can lead to health problems of all kinds. Fast food is so cheap and convenient that it is difficult to forego, especially in this economy, but the cost of eating it could be your health. Michael Pollan says in his book, In Defense of Food, that in the past sixty years, Americans have spent the same portion of their income on two line items – food and healthcare – but the amounts have flip-flopped. As processed food has become cheaper and cheaper, healthcare costs have skyrocketed. Better to spend money on high quality, healthy food than doctors and drugs.
• Don’t Smoke or if you already do, quit. Most of the risk factors for cancer can be controlled by our lifestyles. Exercise, eating right, getting enough sleep and controlling stress are all key, but the best thing you can do to reduce your cancer risk is not to smoke or spend time around people who do.
• Get Screened. There are age appropriate screenings that you need to pay attention to such as colonoscopy, mammogram, pap smears and prostrate exams, and others that are dependent upon risk factors. Be aware of recommendations and get screened. You can also do self-checks at home for potential skin cancers and breast abnormalities.
  

Some organizations advocating for and providing services to young adults with cancer:

I’m Too Young for This
Empowering young adults affected by cancer through a weekly online radio show called Stupid Cancer, a great website full of resources, and a network of social groups across the country.

Cancer Care
Professional counseling, facilitated peer support groups, creative workshops and financial assistance for young adults with cancer.

Cancer Climber
Offering experiential and motivational adventures and excursions such as extreme mountain climbing and summit tours.

First Descents
An innovative camp experience for young adults with cancer offering kayaking, extreme sports and professional athletics.

Fertile Hope
Provides reproductive health information, support and hope to cancer patients whose medical treatments present the risk of infertility.

Planet Cancer
Award-winning young adult-focused community offering survivor retreat programs, social networking, and online forums with real world advice and inspiring stories.

Rise Above It
Provides grants and scholarships to young adult survivors and care providers who face financial, emotional and spiritual challenges.

Young Survivor Coalition
An international network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer.

Works Cited

Albritton, Karen, M.D., Caligiuri, Michael, M.D., Anderson, Barry, M.D., Ph.D., Nichols, Cherie, M.B.A., Ulman, Doug; Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer Report of the Adolescent and Young Adult Oncology Progress Review Group; August 2006; downloaded from http://www.livestrong.org/site/c.khLXK1PxHmF/b.2662637/k.DE41/AYAOPRG.htm

World Cancer Day

Cancer is the leading cause of death around the world. Up to 84 million people will die of it between 2005 and 2015 without intervention, according to the World Health Organization, sponsors of World Cancer Day on February 4th. Their website states that more than 70% of the 7.6 million cancer deaths in 2005 occurred in low and middle income countries.

Reading these statistics once again made me feel grateful for the standard of care I received during my own cancer experience. I have often reflected on how fortunate I am not just to live in one of the wealthiest countries in the world, but in the city that the most people say they want to live according to a recent poll, and one that has top-notch medical treatment facilities. Even people who live in rural areas of this country have a more difficult time obtaining cutting-edge treatment.

As Americans, most of us rarely stop to reflect on just how good we have it. We don’t have to worry on a daily basis about clean water, a comfortable and spacious place to live, access to food, energy and health-care. I had the luxury during my cancer treatment, of access to reiki, retreats and programs targeted to cancer survivors, and, more recently, services for people in my specific age group. Many people in developing countries might be lucky to receive a diagnosis in time to do something about it.

Some incidents in the past few weeks have given me cause to ponder the many modern conveniences we take for granted in this country. They both make our lives easier, and also make us reliant upon them. The electricity in my condo went out for 45 minutes one night last week, and I realized how little of what I normally do was possible or convenient without it. I had just arrived home from a trip and was anxious to do laundry, make something to eat and watch a little television. Couldn’t do any of those things without electricity. It was nice to be forced to sit with a flashlight and a magazine and relax for a little while.

My experience, by any standard, was a very minor inconvenience. Just a few days later, my family experienced a much larger inconvenience, but one that even they describe as “having many silver linings,” even as they are still in the midst of it. The two-inches of ice that blanketed Kentucky and the surrounding region recently was lauded as the storm of the decade for that area the day before it hit, but I’m not sure anyone imagined just how bad it would get. Weighted down by ice, trees and power lines snapped under the pressure, and everything from roads to cell phone towers were coated with the cold, slippery substance.

Electricity was interrupted almost immediately, and for many, their main source of home heat as well. Over the ensuing days, phone service – including cell phones – would be impacted as well, and finally, even water pressure couldn’t be maintained without the electric pumps used to get the water out of the tanks and into the pipes. Even though one large tree is leaning against both of their homes, and part of one tree came through my parents’ bedroom ceiling one night as they were sleeping five feet away, my parents and sister’s family count themselves lucky. They huddled together around the fireplace at my parents’ house, and were able to cook meals on the gas stove. They had plenty of batteries to power radios and flashlights, and a neighbor who still had cell service so they could let everyone know they were doing ok. As my other sister and I kept each other up-to-date on the latest news, we marveled at how quickly the myriad communication methods we all rely upon daily can be cut off. It seems unthinkable in this day and age that we couldn’t communicate when normally there are so many ways for us to keep in touch.

Estimates are that it could take as much as a month to restore power to many, and trees still block the road-ways a week later in much of the area. My mom commented that far from being bored, it was taking most of their time just to survive. Cooking meals, chopping wood, boiling water – all tasks that might have been common in this country 50-100 years ago, depending upon where you live, or in many third-world countries even now. When I remarked to my sister that many people in the world live like this everyday, she replied, “At least they are used to it.”

Good point – and brings us back full-circle to the fact that we are both fortunate to have so many modern conveniences, and also completely reliant upon them. It is only when we find ourselves without them that we are able to fully appreciate how much modern technology brings to our lives, and how much it increases our life expectancy. Today, on World Cancer Day, I will be thinking about those who are not fortunate enough to have the standard of care that we take for granted. But in harmony with the mantra, “think globally, act locally,” I will be supporting organizations in my community that are doing their part to make the lives of cancer survivors easier. I hope you will too.

Happily Ever After

When we were young, the stories read to us, or the Disney movies we watched in excited anticipation, almost always ended with the phrase, “and they lived happily ever after,” usually after the girl married the handsome prince and they rode off into the sunset. No wonder our expectations for love and life are so high! Happily ever after is a high standard - no fights, bounced checks, dented cars, screaming children or skinned knees - just sunshine and bliss and happiness forever and ever.

I have always felt that our entertainment was warping our view of reality. On TV and in the movies, everyone is beautiful and whatever problems they are having are wrapped up neatly in an hour (minus 15 minutes for commercials of course), their dialogue is full of the kinds of things you wish you could think of on the spot during your fight with your boyfriend, and they look better cleaning their house than I did at my high school prom.

There are studies that say people who watch a lot of TV tend to have a misplaced view of reality – feeling that the world is a more dangerous place than it is because of the violence and crime they see on the tube. For me, it has always been the opposite. I see happy people with great lives, love and talent, when I watch, and I wish my life were like theirs.

It’s easy to forget the wardrobe and makeup team and time it took to make Jennifer Aniston look effortlessly beautiful, and we rarely see the mundane parts of anyone’s life on television. No taking out the garbage, or scrubbing the kitchen floor or dealing with the clogged toilet. Their lives seem exciting and fulfilled, they rarely fight with their friends, and if they do, it’s always quickly and easily resolved.

The problem arises when we compare ourselves to the characters on television, in books or movies without the reality check of their personal trainers and chefs to help them keep in shape and eat right, and the overall fantasy of the silver screen. The truth is that behind the scenes even the beautiful people have problems and feel insecure.

We all want “happily ever after,” but there’s no such thing. Life is a journey filled with ups and downs, joys and sorrows, triumphs and disappointments. And what a boring life happily ever after would be anyway. What would life be without the occasional pain that teaches us our most important lessons? We have to be careful not to bring a happily ever after attitude to our own life events too. Weddings can be wonderful, but marriage will certainly be bumpy at best.

In cancer treatment, it’s easy to believe that life AFTER will be joyous again too. When you are doubled over throwing up or staring at your eyebrow-less face or bald head in the mirror, even normal life can seem like a fairytale. However, it takes a while to bounce back, though others in your life might not quite get that. Hair doesn’t grow back in a day, and neither does the idea that you are invincible. That might not ever return. A new perspective is born; and thank goodness for that. It can mean a new appreciation for the good things in your life, and a recognition that the challenges we feel are so insurmountable in daily life, are really not that bad after all.

Life is beautiful – and ugly, and desperate, and hard, and unfair, and peaceful, and loving, and joyous. And even if we don’t always have control of what happens to us, we always have control about how we respond. I have found that many of my biggest problems are of my own creation – they’re all in my head - and only I am capable of getting them out. Margaret Bonnano said, “It is only possible to live happily ever after on a day to day basis.” It might even be an hour-by-hour basis or a minute-by-minute basis, and when we find ourselves slipping into despair or life hands us a new challenge, we have the power to overcome it, and to find ourselves a stronger person on the other side.