Phew. Made it through this one without emptying another box of tissues. "Take One Step - A Conversation About Cancer" is a half-hour panel discussion tacked onto the PBS special "The Truth About Cancer." Hosted by Linda Ellerbee (who is totally fab and a breast cancer survivor), the discussion features four doctors, three of whom are oncologists, all of whom are also cancer survivors. Linda led a Q&A that was insightful and uplifting, and made me wish that one of these guys had been John's oncologist (who, instead, was a burly dude with no bedside manner or inkling of empathy).
A couple of points really stood out to me, and I know I will be trying to keep these things in mind as I continue my reading and research and the introspection that comes along with it. First, Ellerbee and Dr. Paul Brenner talked about how cancer is ennobling. How cancer shows the "nobility of what it is to be human." It's still a crappy and horrific disease... but it brings out the best in people. It boils life down to its bare essentials and its true priorities. I think the term "ennobling" hits the nail on the head - it captures in one word what I was trying to describe at the end of my post yesterday. And it's so true.
The other most wonderful part of this program came right at the end, when Ellerbee asked the panelists, "How do you restore hope to those who have lost it?" Dr. Brenner replied that he believes in the power of visualization, that he asks patients to write down their life stories, to make a video, to write letters to people they love, to "finish unfinished business."
Then he said, "I ask them to see themselves in health and stay in the present. I ask them to really look at their life because the only thing that really counts in the whole journey through life is love."
Word.
Ellerbee went on to conclude, "Cancer is a part of our past, it is a part of our present because we choose to speak about it and for the same reason will be a part of our future but it is not who we are. Cancer is not who anybody is."
And that's true too. For the first few months after John died, all I could think about, and see in my head, was his diseased, ailing body as it broke down more and more each day until, finally, the cancer won. I was both fascinated, on a very primitive level, and horrified, and overflowing with grief as these thoughts of his decline consumed me. I still think about it from time to time, because witnessing the total breakdown of a human body is just such an odd thing - on the one hand, it's one of the most natural processes in the world (as Dr. Brenner said on the show, "We are all born terminal."); but one the other hand, it is, thankfully, not something you see every day. Now, though, for the most part, when I think about John, it's the pre-cancer memories that are foremost in my mind. Because cancer was just one small part of John's life - granted, it's what ended his life, but the disease in no way defined him. Cancer was just a roll of the dice.
Wednesday, April 23, 2008
Tuesday, April 22, 2008
Hungover? Nope, just "The Truth About Cancer."
I woke up this morning with that wonderful hungover feeling where you swear you'll never drink alcohol again. My eyes were puffy, my head was pounding, and my throat was sore from dehydration. Alas, I did not overindulge in pints of Guinness at our local pub last night. Nope. I watched the PBS special "The Truth About Cancer". And it wrecked me.
But in the early spring light of the morning after, even I could see that it was an incredible program. What strikes me most, now that I can think straight without reaching for the box of tissues, is the honesty and candor with which Linda Garmon, the writer and director, approached this most terrifying of topics. She didn't glamorize it and she didn't militarize it, as many people have chosen to cope with cancer in the limelight. Instead, she simply and candidly and heartwrenchingly filmed four families dealing with the disease.
One of these families was hers. Garmon's husband Larry was diagnosed with mesothelioma after being exposed to asbestos decades earlier. Linda and Larry decided to film their cancer journey, at first believing (as most of us who are faced with cancer do) that the story would have a happy ending.
My eyes first welled up with footage of Linda and Larry lounging in their bed. Witnessing the intimacy between them and the obvious joy they experienced just by being around each other (despite the fact that they were filling out medical forms), while knowing that Larry was not going to survive his cancer was just too much for me to handle. I immediately started thinking about my boyfriend, and what if we were - or are, someday - in that same horrible place... too much.
Because that's one of the crappiest things about cancer: it happens to really good people. I mean, it happens to everyone, of course - including really good, lovely, smart, happy people leading fulfilling lives and doing good things for the world. And what they get in return for putting all that good karma out into the universe is cancer? That. Sucks. I know firsthand that it sucks, because it happened to my stepdad. It's a crappy, crappy deal and the thought of having to go through it again - in the worst case, with my boyfriend - completely broke me down.
Nevertheless, I am so grateful that Linda Garmon made this film. Her work shows an enormous amount of courage in creating the most accurate picture of what it is like to go through cancer that I have ever witnessed besides my family's own experience. And now that I have been able to digest the show, the swelling in my eyelids has gone down, and I am almost fully rehydrated, I am left with a profound appreciation for the show and have almost fully recovered my usual positive, optimistic, balanced worldview.
Last night, I was taken aback by my fear. After all I have done as a cancer advocate, and after all the work I am doing now to learn about cancer, how is it that I am still so deeply and completely afraid of it? How can the mere thought of my boyfriend and I someday being faced with the disease cripple me emotionally and keep me crying into the wee hours of the morning?
There are no answers. There are no answers to those questions, and there are no answers to many of the other questions surrounding cancer. That's why people are still suffering. That's why we have no cure, and why we probably will never find one. We will never completely conquer cancer. Among the millions and zillions of cells that make up our bodies will always be a naughty few who mutate. As long as one single mutation occurs, cancer still exists.
But I am living a better life because of the existence of cancer. That is the silver lining of the disease. And just like the disease itself, that silver lining will always be there. I know that I am living a more honest, genuine, forthright, appreciative, courageous, loving, thoughtful, and inspired life because of John, because of cancer, and because of John and cancer. So, focus on that. I'm trying.
But in the early spring light of the morning after, even I could see that it was an incredible program. What strikes me most, now that I can think straight without reaching for the box of tissues, is the honesty and candor with which Linda Garmon, the writer and director, approached this most terrifying of topics. She didn't glamorize it and she didn't militarize it, as many people have chosen to cope with cancer in the limelight. Instead, she simply and candidly and heartwrenchingly filmed four families dealing with the disease.
One of these families was hers. Garmon's husband Larry was diagnosed with mesothelioma after being exposed to asbestos decades earlier. Linda and Larry decided to film their cancer journey, at first believing (as most of us who are faced with cancer do) that the story would have a happy ending.
My eyes first welled up with footage of Linda and Larry lounging in their bed. Witnessing the intimacy between them and the obvious joy they experienced just by being around each other (despite the fact that they were filling out medical forms), while knowing that Larry was not going to survive his cancer was just too much for me to handle. I immediately started thinking about my boyfriend, and what if we were - or are, someday - in that same horrible place... too much.
Because that's one of the crappiest things about cancer: it happens to really good people. I mean, it happens to everyone, of course - including really good, lovely, smart, happy people leading fulfilling lives and doing good things for the world. And what they get in return for putting all that good karma out into the universe is cancer? That. Sucks. I know firsthand that it sucks, because it happened to my stepdad. It's a crappy, crappy deal and the thought of having to go through it again - in the worst case, with my boyfriend - completely broke me down.
Nevertheless, I am so grateful that Linda Garmon made this film. Her work shows an enormous amount of courage in creating the most accurate picture of what it is like to go through cancer that I have ever witnessed besides my family's own experience. And now that I have been able to digest the show, the swelling in my eyelids has gone down, and I am almost fully rehydrated, I am left with a profound appreciation for the show and have almost fully recovered my usual positive, optimistic, balanced worldview.
Last night, I was taken aback by my fear. After all I have done as a cancer advocate, and after all the work I am doing now to learn about cancer, how is it that I am still so deeply and completely afraid of it? How can the mere thought of my boyfriend and I someday being faced with the disease cripple me emotionally and keep me crying into the wee hours of the morning?
There are no answers. There are no answers to those questions, and there are no answers to many of the other questions surrounding cancer. That's why people are still suffering. That's why we have no cure, and why we probably will never find one. We will never completely conquer cancer. Among the millions and zillions of cells that make up our bodies will always be a naughty few who mutate. As long as one single mutation occurs, cancer still exists.
But I am living a better life because of the existence of cancer. That is the silver lining of the disease. And just like the disease itself, that silver lining will always be there. I know that I am living a more honest, genuine, forthright, appreciative, courageous, loving, thoughtful, and inspired life because of John, because of cancer, and because of John and cancer. So, focus on that. I'm trying.
My Nerdy Cancer Reading List
So here is my reading list. A work in progress. I had polished off a few of these books before starting this blog, and will post on them in the order in which I read them. And if it seems like I am not the fastest reader... well, two things: a) I hope that keeping this blog motivates me to be a little more productive, and b) reading about cancer is an intense experience for me, so I intersperse these cancer books with lighter pleasure reading. So there!
Will update this list as I read and inevitably acquire more books (I am a big nerd, after all)...
Will update this list as I read and inevitably acquire more books (I am a big nerd, after all)...
| Bibliography | Date started | Date completed |
| 15 February 2008 | 19 February 2008 | |
| December 2007 | 26 February 2008 | |
| 27 February 2008 | 14 March 2008 | |
| Davis, Devra, The Secret History of the War on Cancer (Basic Books, 2007) | 10 April 2008 |
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| Weinberg, Robert A., One Renegade Cell: How Cancer Begins (Basic Books, 1998) |
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| Greaves, Mel, Cancer: The Evolutionary Legacy (Oxford University Press, 2000) |
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| Pesmen, Curtis, The Colon Cancer Survivors' Guide: Living Stronger, Longer (Tatra Press LLC, 2005) |
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| Nettleton, Sarah, The Sociology of Health and Illness (Polity Press, 2006) |
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| Ongoing - reference |
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| Ongoing - reference |
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What the heck am I doing here?
Well well well. This has been a long time in the making.
I have thought about blogging for the past number of years. My friend Sarah and I wanted to start a celebrity gossip/social commentary blog because we think the emails we send back and forth to each other with our cheeky comments about celebrities' latest career forays and flops, wardrobe malfunctions and/or general lack of fashion sense, accidental pregnancies, accidental marriages, etc., are quite clever. If we do say so ourselves. I have wanted to start other blogs too. I write in journals a lot, so of course I have thought about writing online instead. When I moved to London last January with my boyfriend, I came thisclose to starting a blog about our life here, and balked.
What has stopped me each time? The audience factor. Sarah and I came to the realization that we think our emails are so hilarious because they are full of inside jokes that crack up us and us alone. I don't necessarily want total strangers reading my personal journal entries, and at the same time have a fear that nobody would. Same with the London blog-that-never-was: what if none of our friends or family read it? What if no one was interested? Because surely, at the heart of every blog entry everywhere, is a desire to connect. A hope that what you write will engage someone else on some sort of level that will enrich the experience for both reader and writer.
So what finally motivated me to join the zillions of bloggers out there? What the heck am I doing here and what do I hope to accomplish with Cancer Nerd?
Some quick background information on me and my experience as a cancer caregiver and advocate: My stepdad John was diagnosed with colon cancer in 2002, and died 20 months later. He was 64 years old. Although I did not realize it at the time, I became an advocate the day the disease crashed into our lives with his diagnosis. Since John's death, I have become increasingly active in colorectal cancer advocacy. I fundraise for and run a fabulous race every year in Central Park, the Colon Cancer Challenge. From May 2006 until I moved to London in January 2008, I was the coordinator of the New York City chapter of the Colon Cancer Alliance (CCA), a wonderful advocacy and support organization. I want to get the word out there so that people know they need to be screened for this disease, and then actually follow through with their appointments. Even though colon cancer ran in John's family, he procrastinated about getting a colonoscopy until it was too late. A great man's life was cut short, leaving my mom and me heartbroken. No one should have to experience such a thing if it can be avoided. And with colon and other cancers, I have learned, it often can.
I want to help get a message out to caregivers too. I want those who are thrust into the heartwrenching role of caring for a sick loved one to know that it is ok to ask questions, to do research, to understand what is happening. When John was sick, I felt helpless. I didn't realize I could have asked his doctors why they were choosing specific chemotherapy drugs, or why they did not operate. I could have asked if there were any clinical trials available. I could have picked up a book or Googled "colon cancer" to understand what and where a colon is, and how and why they become infested with cancerous cells and tumors. Some people don't want to know. And that's ok too. But I did, and I didn't do anything about it. Well, I am now.
Being a cancer awareness advocate has made two things crystal clear to me: first, that I want to devote my life to cancer advocacy; and second, that I have a lot to learn. The members of my CCA chapter, most of whom are survivors with incredibly inspirational stories to share, would chat about different drugs and treatments, ostomies, surgeries, even body parts with which I was totally unfamiliar. At the time, I had a full-time job in addition to my volunteer work with CCA and other non-profit organizations, and in my downtime I preferred to watch "Dancing with the Stars" or read PerezHilton.com or smooch my boyfriend than Google "iliostomy" or "Erbitux" or learn about the four stages of cancer. But then I left my job to move across the pond to be with my boyfriend and, as my mom says, "take a swim in Lake Me." I am currently in the fortunate position of being unable to obtain a work visa, and I have been accepted to an MBA program that starts in the fall. So for now, I am on a pontoon boat out in the middle of Lake Me, with a giant stack of cancer history and science books for company.
I have become a total cancer nerd with a voracious appetite to learn everything I can about this horrendous disease. I want to know what it is, where it comes from, how it develops. I want to know why some people beat it and others don't. I also want to learn about the history of cancer advocacy. Who were the pioneers, who declared the "War on Cancer" and how have we not won it yet? Are we still at war at all?
As I plow through the books weighing down the bookshelves of our tiny house in London, I will post about them. I watched the PBS special "The Truth About Cancer" last night (thanks to the miracle of modern technology that is the Slingbox, I can watch my mom's TV in New York on my computer here in London) and it wrecked me and I need to explore why, so I'll write about that too. I'm not here to offer medical advice or even particularly well-written prose. I'm here for myself with a faint - but strong - glimmer of hope in my heart that my being here might help someone else.
My highest and dearest hope for this blog is this: at some point, someone who is currently coping with cancer in whatever capacity will stumble upon this humble little blog and see a post that, for whatever reason, will help them. Maybe they are looking for a good cancer history or basic science book to read. Maybe they want to know about some organizations that are making great strides against this disease. Maybe they just need to know that they are not alone.
You're not. And, apparently, neither am I.
I have thought about blogging for the past number of years. My friend Sarah and I wanted to start a celebrity gossip/social commentary blog because we think the emails we send back and forth to each other with our cheeky comments about celebrities' latest career forays and flops, wardrobe malfunctions and/or general lack of fashion sense, accidental pregnancies, accidental marriages, etc., are quite clever. If we do say so ourselves. I have wanted to start other blogs too. I write in journals a lot, so of course I have thought about writing online instead. When I moved to London last January with my boyfriend, I came thisclose to starting a blog about our life here, and balked.
What has stopped me each time? The audience factor. Sarah and I came to the realization that we think our emails are so hilarious because they are full of inside jokes that crack up us and us alone. I don't necessarily want total strangers reading my personal journal entries, and at the same time have a fear that nobody would. Same with the London blog-that-never-was: what if none of our friends or family read it? What if no one was interested? Because surely, at the heart of every blog entry everywhere, is a desire to connect. A hope that what you write will engage someone else on some sort of level that will enrich the experience for both reader and writer.
So what finally motivated me to join the zillions of bloggers out there? What the heck am I doing here and what do I hope to accomplish with Cancer Nerd?
Some quick background information on me and my experience as a cancer caregiver and advocate: My stepdad John was diagnosed with colon cancer in 2002, and died 20 months later. He was 64 years old. Although I did not realize it at the time, I became an advocate the day the disease crashed into our lives with his diagnosis. Since John's death, I have become increasingly active in colorectal cancer advocacy. I fundraise for and run a fabulous race every year in Central Park, the Colon Cancer Challenge. From May 2006 until I moved to London in January 2008, I was the coordinator of the New York City chapter of the Colon Cancer Alliance (CCA), a wonderful advocacy and support organization. I want to get the word out there so that people know they need to be screened for this disease, and then actually follow through with their appointments. Even though colon cancer ran in John's family, he procrastinated about getting a colonoscopy until it was too late. A great man's life was cut short, leaving my mom and me heartbroken. No one should have to experience such a thing if it can be avoided. And with colon and other cancers, I have learned, it often can.
I want to help get a message out to caregivers too. I want those who are thrust into the heartwrenching role of caring for a sick loved one to know that it is ok to ask questions, to do research, to understand what is happening. When John was sick, I felt helpless. I didn't realize I could have asked his doctors why they were choosing specific chemotherapy drugs, or why they did not operate. I could have asked if there were any clinical trials available. I could have picked up a book or Googled "colon cancer" to understand what and where a colon is, and how and why they become infested with cancerous cells and tumors. Some people don't want to know. And that's ok too. But I did, and I didn't do anything about it. Well, I am now.
Being a cancer awareness advocate has made two things crystal clear to me: first, that I want to devote my life to cancer advocacy; and second, that I have a lot to learn. The members of my CCA chapter, most of whom are survivors with incredibly inspirational stories to share, would chat about different drugs and treatments, ostomies, surgeries, even body parts with which I was totally unfamiliar. At the time, I had a full-time job in addition to my volunteer work with CCA and other non-profit organizations, and in my downtime I preferred to watch "Dancing with the Stars" or read PerezHilton.com or smooch my boyfriend than Google "iliostomy" or "Erbitux" or learn about the four stages of cancer. But then I left my job to move across the pond to be with my boyfriend and, as my mom says, "take a swim in Lake Me." I am currently in the fortunate position of being unable to obtain a work visa, and I have been accepted to an MBA program that starts in the fall. So for now, I am on a pontoon boat out in the middle of Lake Me, with a giant stack of cancer history and science books for company.
I have become a total cancer nerd with a voracious appetite to learn everything I can about this horrendous disease. I want to know what it is, where it comes from, how it develops. I want to know why some people beat it and others don't. I also want to learn about the history of cancer advocacy. Who were the pioneers, who declared the "War on Cancer" and how have we not won it yet? Are we still at war at all?
As I plow through the books weighing down the bookshelves of our tiny house in London, I will post about them. I watched the PBS special "The Truth About Cancer" last night (thanks to the miracle of modern technology that is the Slingbox, I can watch my mom's TV in New York on my computer here in London) and it wrecked me and I need to explore why, so I'll write about that too. I'm not here to offer medical advice or even particularly well-written prose. I'm here for myself with a faint - but strong - glimmer of hope in my heart that my being here might help someone else.
My highest and dearest hope for this blog is this: at some point, someone who is currently coping with cancer in whatever capacity will stumble upon this humble little blog and see a post that, for whatever reason, will help them. Maybe they are looking for a good cancer history or basic science book to read. Maybe they want to know about some organizations that are making great strides against this disease. Maybe they just need to know that they are not alone.
You're not. And, apparently, neither am I.
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