Mulling over organizations like First Descents, i[2]y, and the upcoming OMG Summit, I have felt the need to redefine my 40-by-40. It hasn't helped that Susan G. Komen recently partnered with KFC (yes, KENTUCKY FRIED CHICKEN) to raise money for breast cancer with their "Buckets For The Cure" campaign. Truth be told, pinkwashing has left an icky taste in even this BC survivor's mouth. This last year has just made me see so clearly that survivorship is more than wearing a ribbon... it's about learning to love - and really live - your life after cancer. That, for me, is what making it to my 5-year survivorship anniversary is really about.
Young (15-39) survivors in particular are an underserved population, and the only one whose survival rates haven't changed in 30 years. Nearly 70,000 of us are diagnosed each year, literally in the prime of our lives - we are either just getting ready to come into our own career-wise, or starting to think about having children. Many of us have just had children (if I had a dollar for every "I found my lump breastfeeding my first child" story...) or are thinking about it. Cancer is the word that brings your future to a screeching halt, when you're under 40.
In light of all this, I'm finding it hard to motivate myself to raise $40,000 for causes and organizations that will not necessarily help people who are going through what I went through, as a young survivor. Yes, research is important; yes, support services are important, and YES, awareness is important, but youth are already marginalized in society. If I'm going to spend the next 4 years committed to promoting cancer survivorship, I feel obligated to spend it committed to promoting the survivorship of MY demographic - young adults affected by cancer.
The question, of course, is how?
Now, I'm still working this all out, but it did occur to me this week, there's a reason why Lance Armstrong hasn't had a recurrence. First, he takes care of himself. Second, he has literally declared war on cancer - the man is relentless when it comes to the cause. Third, he's an inspiration - positive and driven, with a commitment to doing whatever it takes to win the battle. In my post-cancer journey, I've often wondered, how many times must Lance have thought, "I'll never win the Tour de France now. I will be lucky to even be alive after this..." And yet, this man won it SEVEN times AND had a naturally-conceived kid post-treatment. If that doesn't inspire a survivor to think anything is possible, I don't know what would.
The 5-year survivor mark, as I've said, is the statistic that trumps all other statistics. If you can make it to 5 years, you have the same chance of long-term survival as anyone else, no matter what stage or what cancer you've had. So I asked myself, what would the five years after cancer have to look like, to make 40 a goal I'd want to get to? If I found out the day before my 40th birthday that I'd had a recurrence, what would make the last 5 years worth living? The question that really drove the definition of this new 40-by-40 though, was born directly from my First Descents experience. It was "What do I think has been taken away from me, or is now unavailable to me, because I've had cancer?" In answering it, I made a list whose only goal was to blow that assumption to smithereens.
THAT is how you get busy living, my friends. :)
And so, without further ado, here is my NEW 40-by-40, or, at least the first 30 of them (I'm reserving the right to add more as I think more about this). It's designed to challenge me physically, emotionally, spiritually and mentally, and is kind of a cross between a Bucket List and a Fear Factor schedule. In upcoming blogs, I'll take you through the whys and hows of choosing them, and invite you to join me in being a part of them. And yes, I am giving myself credit for 3 events I did last year. ;)
1. Do a Komen 3-Day Walk.
2. Do an Avon 2-Day Walk.
3. Do the Peak Hike on Mt. Tam to benefit the Breast Fund.
4. Write & publish my manifesto (Recipe For Lemonade).
5. Rock climb in Moab, UT.
6. Run the NYC Marathon.
7. Have my own place again.
8. Inner-tube down the Russian River on Labor Day Weekend.
9. Run the Disney Princess 1/2 Marathon in Florida.
10. Go to an Oprah show with my friend Loren Madden.
11. Finish the Napa Tri with my friend Kristy Lundy.
12. Go on a David Lebovitz Chocolate Tour of Paris with my friend Anne Barrow.
13. Skydive with my friend Ian Fuller.
14. Run the Honolulu Marathon 10 years after I first ran it.
15. Learn to roll a kayak with First Descents.
16. Speak at a major survivor event like the OMG Summit or the Young Survivor Conference.
17. Learn the 6 Basic Figure Skating Jumps.
18. Learn to play the electric guitar. Rock the Fender Strat.
19. Execute a Dusk-to-Dawn Dance Party Fundraiser benefiting a young survivor non-profit.
20. Go to Bora-Bora for 2 weeks with someone I love.
21. Learn to fly-fish with Casting for Recovery.
22. Perfect my chocolate-chip cookie recipe.
23. Go to the Telluride or Sundance Film Festival.
24. Complete an event in Gatlinburg to celebrate the life of my friend Kevin Price's brother, who died young from cancer.
25. Train with Team in Training to complete an Ironman as part of IronTeam.*
26. Run a mile in under 8 minutes.
27. Start a garden again.
28. Do a Muddy Buddy event with my friend Katie Birkholz.
29. Secure a well-paying job I love, with great benefits (including health insurance).
30. Take my niece and her half-sister to Kaua'i to learn how to surf.
*This is a program that is only run in Northern California and requires a major fundraising commitment for an organization that does not directly serve young survivors - I reserve the right to replace it with something else if I run into the Komen-KFC factor and it rubs me the wrong way. Alternately, I would set a goal to hike Mt. Kilimanjaro, which would probably be just as strenuous and as expensive.
Well, that's it so far. Again, I reserve the right to review and revise! This is just draft 1. Lemmeneaux whatcha think. ;)
Thursday, April 29, 2010
Tuesday, April 27, 2010
Room For Weakness
I used to be the kind of person who had no room in her life for weakness... no room for someone who could not pull their own weight, who could not stiffen their own upper lip. If you admitted your failures around me, it would not endear me to you; instead, I might become slightly embarrassed for you, and feel awkward in your presence. I did not know how to relate to people who could not handle things, because I Knew How To Handle Things. I was raised by someone who Knew Everything and made it his mission to teach me Everything I Would Need To Know. The only problem was, he died too soon. Like Edward Scissorhands, I wasn't finished.
Between then and now, my sister has mastered the art of Pulling Her Own Weight. She Knows Everything. I thought I did, until I had cancer.
What cancer teaches you, first and foremost, is that you are not in control. Of anything. Of any cell in your body. Cancer laughs at your big dreams, your sense of security, your positive affirmations. It reminds you that you're human, and mortal, and capable of being flawed, and if you are wise, in the end, you are the richer person for it. You become, after cancer, someone with Room for Weakness.
I am different after cancer... better, I think, because of this space allowance for people who err, who don't know, who trip over cracks. My life, instead, has little room for perfection. Excellence has become redefined in this new life as courage instead of flawlessness, bravery instead of confidence. My heart goes out to the shaking knees that stand anyway, to the sweaty palm that holds on tight despite its dampness. I have room in my life for weakness now, because it charms and soothes me in its familiarity. I see myself in people who are unsure, but push on, who don't pretend to know everything and, perhaps, have realized they know nothing.
The hardest part, I think, is the space between my sister and I that has grown in the face of my tolerance for imperfection, for less-than-stellarness. I think she sees it, not as a personal development, but a chink in my armor, a vulnerability that renders me unreliable, uncount-on-able, un-understandable. She cannot accommodate an Achilles' heel in her world, built on certainties and promises of security. It interrupts her future show like a band of static on the screen, marring its perfection. I feel so much now like the rough patch on a fingernail, catching everything, much to her annoyance.
It started before this, I think, with my wild garden in the backyard, my wall-to-wall posters in the room we shared as teenagers. I read through letters she sent me years ago, trying to find the person she admired so much, trying to see if there was anything I did to contribute to her intolerance of imperfection, and am lost. I cannot even find the person I used to be; perhaps it is a good thing I do not mourn her.
In the end, perfection is too much for someone who has been forced to recognize their own flaws. It instills a sense of failure, and what survivors thrive on is faith - the blind kind, usually - in them, in their future, in life. Knowing that others err and fall and get back up again is food for our souls - it reminds us we haven't missed our window or blown our chances, and that strength is something that is not untested, but tried again and again, and better for it.
Between then and now, my sister has mastered the art of Pulling Her Own Weight. She Knows Everything. I thought I did, until I had cancer.
What cancer teaches you, first and foremost, is that you are not in control. Of anything. Of any cell in your body. Cancer laughs at your big dreams, your sense of security, your positive affirmations. It reminds you that you're human, and mortal, and capable of being flawed, and if you are wise, in the end, you are the richer person for it. You become, after cancer, someone with Room for Weakness.
I am different after cancer... better, I think, because of this space allowance for people who err, who don't know, who trip over cracks. My life, instead, has little room for perfection. Excellence has become redefined in this new life as courage instead of flawlessness, bravery instead of confidence. My heart goes out to the shaking knees that stand anyway, to the sweaty palm that holds on tight despite its dampness. I have room in my life for weakness now, because it charms and soothes me in its familiarity. I see myself in people who are unsure, but push on, who don't pretend to know everything and, perhaps, have realized they know nothing.
The hardest part, I think, is the space between my sister and I that has grown in the face of my tolerance for imperfection, for less-than-stellarness. I think she sees it, not as a personal development, but a chink in my armor, a vulnerability that renders me unreliable, uncount-on-able, un-understandable. She cannot accommodate an Achilles' heel in her world, built on certainties and promises of security. It interrupts her future show like a band of static on the screen, marring its perfection. I feel so much now like the rough patch on a fingernail, catching everything, much to her annoyance.
It started before this, I think, with my wild garden in the backyard, my wall-to-wall posters in the room we shared as teenagers. I read through letters she sent me years ago, trying to find the person she admired so much, trying to see if there was anything I did to contribute to her intolerance of imperfection, and am lost. I cannot even find the person I used to be; perhaps it is a good thing I do not mourn her.
In the end, perfection is too much for someone who has been forced to recognize their own flaws. It instills a sense of failure, and what survivors thrive on is faith - the blind kind, usually - in them, in their future, in life. Knowing that others err and fall and get back up again is food for our souls - it reminds us we haven't missed our window or blown our chances, and that strength is something that is not untested, but tried again and again, and better for it.
Sunday, April 25, 2010
Fred's Team - NYC Marathon 2010!!
Just wanted to remind y'all, as part of my 40-by-40, I am running the New York City Marathon this November and raising $3,000 for Fred's Team, benefiting Memorial Sloan-Kettering Hospital. Memorial Sloan-Kettering, in addition to being the place where fellow survivor Geralyn Lucas was treated, is the nation's preeminent center for research and treatment devoted exclusively to cancer.
Fred's Team is a group of dedicated runners of all abilities who participate in athletic events to raise funds for cancer research at Memorial Sloan-Kettering Cancer Center. Since its founding in 1995, Fred's Team --
You can help the cause by donating to my Fred's Team run. Your support will help fund new research and new treatments that bring true hope to people affected by cancer.
My Participant # for this event is: 999934646.
Here is the link to my personal donation page: http://mskcc.convio.net/site/TR?px=1760262&fr_id=1310&pg=personal
Fred's Team is a group of dedicated runners of all abilities who participate in athletic events to raise funds for cancer research at Memorial Sloan-Kettering Cancer Center. Since its founding in 1995, Fred's Team --
- has raised more than $38 million to benefit vital research at MSKCC.
- is the primary source of support for the Aubrey Fund for Pediatric Cancer Research, established in 1997 to benefit ongoing research for childhood cancers, including leukemia, neuroblastoma, brain tumors, and certain forms of sarcoma.
- attracts thousands of members who participate in marathons and athletic events of all types, in New York, Chicago, Boston, and worldwide.
You can help the cause by donating to my Fred's Team run. Your support will help fund new research and new treatments that bring true hope to people affected by cancer.
My Participant # for this event is: 999934646.
Here is the link to my personal donation page: http://mskcc.convio.net/site/TR?px=1760262&fr_id=1310&pg=personal
First Descents
I just came back from my first First Descents camp and it was, in a word, amazing.
Transformative.
Rejuvenating.
Phenomenal.
In fact, I think this photo pretty much says it all:
But, if you want to know more about the camp, check out this video, or, listen to me share my experience TOMORROW NIGHT on the Stupid Cancer Radio Show at BlogTalk Radio.
Transformative.
Rejuvenating.
Phenomenal.
In fact, I think this photo pretty much says it all:
But, if you want to know more about the camp, check out this video, or, listen to me share my experience TOMORROW NIGHT on the Stupid Cancer Radio Show at BlogTalk Radio.
Wednesday, April 14, 2010
Barbara Ehrenreich and Positive Thinking
I wanted to share this interview with Jon Stewart and Barbara Ehrenreich, whose new book "Bright-Sided" discusses the dark side of positive thinking: http://www.thedailyshow.com/watch/wed-october-14-2009/barbara-ehrenreich
Many times, when you are coping with an unexpected disappointment or particularly challenging time in your life (like cancer), people (even people you love) try to help you feel better by suggesting you just "think positive" and "don't dwell on the negative." I talk about this in Chapter Five of my book, Recipe For Lemonade.
I can't tell you how annoying this is for someone going through cancer.
Now, there is a difference between a heartfelt, "It'll get better; hang in there," (which I love) and a somewhat self-righteous, The Secret/Law Of Attraction-motivated attitude that implies a person can bring misfortune on themselves deliberately through a combination of their thoughts and the science (or magic) of quantum physics.
I myself have been buoyed by hugs, e-mails with supportive, encouraging messages, and belly laughs brought on by joking coworkers. Whether these things have changed my white blood cell counts remains to be seen, but I do know that they have given me a reason to get up in the morning - something to keep living for - which is very motivating when you're fighting for your life. To put it frankly, these things can be the difference between wanting to live and wanting to die. What they cannot do, however, is cure cancer.
We don't want to believe this, of course. We want saving someone's life to be as simple as the power of prayer. We don't want to believe that sometimes, people die and there is nothing you can do to stop it. That's a terrible world to live in, isn't it? A world where someone you love, no matter how much you love them, or how much they love you, can be beaten by their own genetics or a lack of T-cells. And yet, this is the world we live in, and no amount of happy thoughts can change it. Why is it we can believe positive thinking can cure cancer, but it can't cure AIDS? Why do scores of people bash chemotherapy when it has saved millions of lives? I know it's not perfect, but it's ALL WE'VE GOT. If you have a better solution, for God's sake, get some medical training and go prove it at the Mayo Clinic, because we could certainly use an alternative. But don't sit there when you haven't had a doctor tell you that you could die if you don't do what they say, and then suggest I meditate on rainbows to shrink my tumor.
When people I love tell me not to be so negative (i.e., realistic) about cancer and the ramifications of having had it, I wish that, for just a moment, they could be in my shoes. That, for just a moment, they could feel the fainting heart and nauseous stomach that comes with a cancer diagnosis. The sinking feeling that accompanies the realization that the life you thought lay before you - the one you were working towards, hanging in there for, and getting up in the morning for - has been utterly wiped out, like Nagasaki, in a split second. I wish they could go through week after week of treatment - each chemo drip reaffirming the unavailability and inaccessibility of that future - and know how hard it is to keep getting up in the morning, despite your uncertainty about the future. But mostly, I wish they could feel the way I feel when someone suggests in the face of all this that staying positive can not only cure cancer, but keep it away. Are you fucking kidding me? I want to say. You do four rounds of AC and twelve rounds of Taxol and tell me how to stay positive when I look like Uncle Fester and my future looks like Hiroshima (circa 1946). It is taking everything I have in me just to keep waking up in the morning.
Now, all that being said, there is a way to come out of cancer without hating your life and the people who have loved you through it. The first is, recognize that there is a pro and a con to nearly everything. Sometimes, the only pro is this will not last forever, and that is what you must hang onto if you want to make it to the other side of disaster. Sometimes, the cons build up so much that all you can do is curl up in a ball and cry. When this happens, cry. Cry, cry, cry. Cry till your eyes are swollen shut. Stay away from drugs, alcohol, and anything else that's self-destructive, and curl up in bed until you fall asleep. When you wake up, that crappy day will be over and done and a new one will have started. When you get out of bed, on this new day, don't think of it as one more crappy day to get through - think of it as one day closer to the end of a crappy week, crappy month, or crappy year. It won't stay crappy forever - sooner or later, things WILL get better. Your job is to make it to the end of the crap. Trust me, it will come.
When the crap breaks, take a breath. Entertain the possibility that, even if this amazing life you were working so hard for and imagining every day is not to be, that there might be some alternate, happier (or just-as-happy) future available to you now. This is all you have to do - drive the wedge into your crap-centric thinking - to jump the track. Find the things in your life you can be content with, even happy about, and you will feel the crushing despair of impossibility lift, if only slightly.
This is the path to rebuilding optimism - not faking it till you make it, not pasting on a smile when you feel like giving up, but seeking out the reasons to keep living, keep hoping, keep dreaming. Giving yourself permission to imagine new happinesses and forgiving yourself for having a bad day, or a bad month, or a bad year. We only blame ourselves for misery because we don't want to live in a world where anyone can fall apart at any time for no good reason. We have to believe that people bring it on themselves, otherwise we're all vulnerable. When someone tells you to "stay positive" instead of worrying about a recurrence, they're either afraid of their own mortality, or grasping at straws because they don't want to imagine a world without you. Chances are, they have no idea what you're going through, so unless they're being a pushy jerk, cut them some slack.
Especially if they bought you a pink bear.
Many times, when you are coping with an unexpected disappointment or particularly challenging time in your life (like cancer), people (even people you love) try to help you feel better by suggesting you just "think positive" and "don't dwell on the negative." I talk about this in Chapter Five of my book, Recipe For Lemonade.
I can't tell you how annoying this is for someone going through cancer.
Now, there is a difference between a heartfelt, "It'll get better; hang in there," (which I love) and a somewhat self-righteous, The Secret/Law Of Attraction-motivated attitude that implies a person can bring misfortune on themselves deliberately through a combination of their thoughts and the science (or magic) of quantum physics.
I myself have been buoyed by hugs, e-mails with supportive, encouraging messages, and belly laughs brought on by joking coworkers. Whether these things have changed my white blood cell counts remains to be seen, but I do know that they have given me a reason to get up in the morning - something to keep living for - which is very motivating when you're fighting for your life. To put it frankly, these things can be the difference between wanting to live and wanting to die. What they cannot do, however, is cure cancer.
We don't want to believe this, of course. We want saving someone's life to be as simple as the power of prayer. We don't want to believe that sometimes, people die and there is nothing you can do to stop it. That's a terrible world to live in, isn't it? A world where someone you love, no matter how much you love them, or how much they love you, can be beaten by their own genetics or a lack of T-cells. And yet, this is the world we live in, and no amount of happy thoughts can change it. Why is it we can believe positive thinking can cure cancer, but it can't cure AIDS? Why do scores of people bash chemotherapy when it has saved millions of lives? I know it's not perfect, but it's ALL WE'VE GOT. If you have a better solution, for God's sake, get some medical training and go prove it at the Mayo Clinic, because we could certainly use an alternative. But don't sit there when you haven't had a doctor tell you that you could die if you don't do what they say, and then suggest I meditate on rainbows to shrink my tumor.
When people I love tell me not to be so negative (i.e., realistic) about cancer and the ramifications of having had it, I wish that, for just a moment, they could be in my shoes. That, for just a moment, they could feel the fainting heart and nauseous stomach that comes with a cancer diagnosis. The sinking feeling that accompanies the realization that the life you thought lay before you - the one you were working towards, hanging in there for, and getting up in the morning for - has been utterly wiped out, like Nagasaki, in a split second. I wish they could go through week after week of treatment - each chemo drip reaffirming the unavailability and inaccessibility of that future - and know how hard it is to keep getting up in the morning, despite your uncertainty about the future. But mostly, I wish they could feel the way I feel when someone suggests in the face of all this that staying positive can not only cure cancer, but keep it away. Are you fucking kidding me? I want to say. You do four rounds of AC and twelve rounds of Taxol and tell me how to stay positive when I look like Uncle Fester and my future looks like Hiroshima (circa 1946). It is taking everything I have in me just to keep waking up in the morning.
Now, all that being said, there is a way to come out of cancer without hating your life and the people who have loved you through it. The first is, recognize that there is a pro and a con to nearly everything. Sometimes, the only pro is this will not last forever, and that is what you must hang onto if you want to make it to the other side of disaster. Sometimes, the cons build up so much that all you can do is curl up in a ball and cry. When this happens, cry. Cry, cry, cry. Cry till your eyes are swollen shut. Stay away from drugs, alcohol, and anything else that's self-destructive, and curl up in bed until you fall asleep. When you wake up, that crappy day will be over and done and a new one will have started. When you get out of bed, on this new day, don't think of it as one more crappy day to get through - think of it as one day closer to the end of a crappy week, crappy month, or crappy year. It won't stay crappy forever - sooner or later, things WILL get better. Your job is to make it to the end of the crap. Trust me, it will come.
When the crap breaks, take a breath. Entertain the possibility that, even if this amazing life you were working so hard for and imagining every day is not to be, that there might be some alternate, happier (or just-as-happy) future available to you now. This is all you have to do - drive the wedge into your crap-centric thinking - to jump the track. Find the things in your life you can be content with, even happy about, and you will feel the crushing despair of impossibility lift, if only slightly.
This is the path to rebuilding optimism - not faking it till you make it, not pasting on a smile when you feel like giving up, but seeking out the reasons to keep living, keep hoping, keep dreaming. Giving yourself permission to imagine new happinesses and forgiving yourself for having a bad day, or a bad month, or a bad year. We only blame ourselves for misery because we don't want to live in a world where anyone can fall apart at any time for no good reason. We have to believe that people bring it on themselves, otherwise we're all vulnerable. When someone tells you to "stay positive" instead of worrying about a recurrence, they're either afraid of their own mortality, or grasping at straws because they don't want to imagine a world without you. Chances are, they have no idea what you're going through, so unless they're being a pushy jerk, cut them some slack.
Especially if they bought you a pink bear.
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