If you read the “Feeling Fit” section of the Charlotte Sun, you’ll notice that it is teaming with announcements for all kinds of support groups meetings. It seems like nearly every malady imaginable is covered, so it was surprising to me that Charlotte County had no lung cancer support group.
Thanks to the effort of Irene and Carlos Gargiulo, that is no longer true. The first meeting of the Charlotte County Lung Cancer Support Group was held in December, with about 18 people in attendance. Many who came are lung cancer patients, but there were others who are caregivers grieving for a recently lost loved one. The group plans to get together once a month on the second Tuesday. The next meeting is January 12th from 2 PM in the 4th floor conference room at the Charlotte Medical Plaza (next to Charlotte Regional Medical Center). For more information contact Irene Gargiulo at icgarg@embarqmail.com.
Having a support group is invaluable. No one knows better the range of emotions you have after a lung cancer diagnosis than another patient. Sharing those feeling is important therapy. Since there was no support group in the area when I was diagnosed, I went on the internet to seek out support and information. The first thing I did was purchase books on lung cancer. I also found an online support group, hosted by the Lung Cancer Alliance. This group provides a resource to the experiences of thousands of lung cancer patients and caregivers. (See http://www.inspire.com/groups/lung-cancer-alliance-survivors/)
One of the best books I found is called “Lung Cancer – Myths, Facts, Choices and Hope” written by famed lung cancer researcher Dr. Claudia Henschke and Peggy McCarthy, founder of the Alliance for Lung Cancer Advocacy. I read the 400 pages cover to cover in a day, devouring the content as if my life depended on it. What I learned in those pages, in fact, helped save my life. Knowing that people do survive a lung cancer diagnosis provided me the motivation to fight and to believe that there was a way through to a new chapter in my life.
The sad fact is that many lung cancer patients have an overwhelming sense of guilt. They feel responsible, somehow, for contracting the disease. Many lung cancer patients adopt the attitude that they “deserve what they get” and choose to get no treatment. These feelings of guilt may be reinforced by family, friends, and even healthcare providers, who Peggy McCarthy says “view lung cancer as a lesson in the wages of sin.” “Pervasive negative feelings about smoking”, she says, results in “lung cancer patients not being offered aggressive life-saving treatments.” Guilt ridden patients frequently don’t demand treatments that could prolong or improve their lives. McCarthy says we need to confront these attitudes and change them. I agree. The attitude of some in the medical community is particularly irksome.
There is an interesting story in the book talking about Alice Steward Trillen, who at the age of 38, coughed up a small clot of blood, went for an X-ray, and learned she had lung cancer. The book quotes Trillen as saying “I was young. I was healthy. I never smoked a cigarette in my life. The doctors tried to give me explanations for the tumor and seemed embarrassed that they couldn’t come up with any. I sneaked a look at my hospital chart and found in one doctor’s report on me the phrase, “Patient gives the story that she never smoked.” This doctor simply found it necessary to blame me for having lung cancer.”
Lung cancer patients need support and encouragement from their family, friends and doctors if they are going to beat the disease. Feelings of guilt and remorse and assigning blame for the disease only make recovery more difficult.
Irene and Carlos may not realize it, but I have no doubt the support group they have formed is going to help save or extend lives. I plan to attend every month. If you are a lung cancer patient, please join us.
Monday, December 28, 2009
2010 Preview
I’ve been thinking about 2010 and what the year will bring. First I have to say I am glad to be here to live another year. I never forget that every day is a blessing. Someone sent me an electronic Christmas card that had a quote from Winston Churchill that said, “We make a living by what we get, we make a life by what we give.” How true that is.
This has been a hard year for most people. The economy has been in a slump and families are hurting. During the year I became Chairman of the Board of the Virginia B Andes Volunteer Community Clinic, which saw more than 4500 patients in need. The clinic provides urgent or episodic care for folks in Charlotte County who don’t have or can’t afford health insurance. It’s an alternative to having to have go to the emergency room. I can’t tell you how proud I am of the work we do at the free clinic and pharmacy. We have received fantastic support from the community at large and the medical community in particular. Helping to organize and fund the clinic is truly one of the best things I have ever done in my life. I am looking forward to continuing to work for the clinic in the New Year.
In April I attended the National Lung Cancer Partnership Advocate Summit in Dallas, which gave me the idea of organizing the Free to Breathe 5K event in October. I’ve developed a passion about doing something about cancer and lung cancer in particular thanks to the inspired leadership of this organization. Not a day goes by that I don’t think about cancer and how quickly lives are taken by this disease. I lost a number of friends and clients – two to lung cancer -- during the year. We are already planning the next Free to Breathe 5K event for November 13th 2010 at Charlotte Sports Park.
In the new year I am serving as honorary chair of the Port Charlotte Relay for Life, to benefit our local chapter of the American Cancer Society. The Relay will be held May 1st and 2nd and we need as many team members as we can get. Please let me know if you would like to join our “We Have a Dream” team!
Yoko and I have never been in the habit of planning travel far in advance, but with the girls out of the house and on their own, it is hard to get together without some forethought. We are already making plans for the New Year.
I am expecting my Mom to come down from Pennsylvania for a few weeks in January and I am also hoping to see other friends and relatives over the course of the winter. January is shaping up to be a busy month.
In February Yoko wants to go to Tallahassee to attend “Dance Marathon.” Since her freshman year my daughter Jessica has been involved in organizing this fundraiser to benefit Shands Children’s Hospital in Gainesville. We want to give Jessie our support on Valentine’s Day. I also want to make a trip to Scottsdale, Arizona, to play golf, if we can find the time.
If all is well, this summer I would like to take a trip to the mountains of Tennessee with Yoko and the dog. The plan would be to rent a cabin and spend a few months of the summer working from a cool mountain retreat. (I would have remote access to my workstation.) I have a book project to work on and a screen play I would like to finally finish as well.
Finally, this time next year, if all goes well, I am planning to rent a condo somewhere in Colorado for a week of skiing and winter fun with the family. All the girls have promised to be there. Now that is something to look forward to in 2010!
This has been a hard year for most people. The economy has been in a slump and families are hurting. During the year I became Chairman of the Board of the Virginia B Andes Volunteer Community Clinic, which saw more than 4500 patients in need. The clinic provides urgent or episodic care for folks in Charlotte County who don’t have or can’t afford health insurance. It’s an alternative to having to have go to the emergency room. I can’t tell you how proud I am of the work we do at the free clinic and pharmacy. We have received fantastic support from the community at large and the medical community in particular. Helping to organize and fund the clinic is truly one of the best things I have ever done in my life. I am looking forward to continuing to work for the clinic in the New Year.
In April I attended the National Lung Cancer Partnership Advocate Summit in Dallas, which gave me the idea of organizing the Free to Breathe 5K event in October. I’ve developed a passion about doing something about cancer and lung cancer in particular thanks to the inspired leadership of this organization. Not a day goes by that I don’t think about cancer and how quickly lives are taken by this disease. I lost a number of friends and clients – two to lung cancer -- during the year. We are already planning the next Free to Breathe 5K event for November 13th 2010 at Charlotte Sports Park.
In the new year I am serving as honorary chair of the Port Charlotte Relay for Life, to benefit our local chapter of the American Cancer Society. The Relay will be held May 1st and 2nd and we need as many team members as we can get. Please let me know if you would like to join our “We Have a Dream” team!
Yoko and I have never been in the habit of planning travel far in advance, but with the girls out of the house and on their own, it is hard to get together without some forethought. We are already making plans for the New Year.
I am expecting my Mom to come down from Pennsylvania for a few weeks in January and I am also hoping to see other friends and relatives over the course of the winter. January is shaping up to be a busy month.
In February Yoko wants to go to Tallahassee to attend “Dance Marathon.” Since her freshman year my daughter Jessica has been involved in organizing this fundraiser to benefit Shands Children’s Hospital in Gainesville. We want to give Jessie our support on Valentine’s Day. I also want to make a trip to Scottsdale, Arizona, to play golf, if we can find the time.
If all is well, this summer I would like to take a trip to the mountains of Tennessee with Yoko and the dog. The plan would be to rent a cabin and spend a few months of the summer working from a cool mountain retreat. (I would have remote access to my workstation.) I have a book project to work on and a screen play I would like to finally finish as well.
Finally, this time next year, if all goes well, I am planning to rent a condo somewhere in Colorado for a week of skiing and winter fun with the family. All the girls have promised to be there. Now that is something to look forward to in 2010!
Monday, December 14, 2009
Christmas Missives
My favorite part of Christmas is getting carefully crafted letters from old friends and acquaintances. One of my life-long friends, Eric Madsen, sends out a hilarious Christmas missive every year highlighting the antics of his (now grown) children. We generally don’t hear much from Eric and his family during the year, but we never lose track of what is going on with the Madsen family thanks to Eric’s annual Christmas letters.
Last year Eric wrote about how his boys “once hung on his every word and now hang him with every word.” In the old days, he says, “he served as a fount of advice” for his children. Now any suggestion he makes is “met with rolling eyes, heaving sighs and cries of “ole school!”” Eric writes with a wink: “They are not as smart as they think. I’m still lucid enough to have them removed from my will. That’s how we roll in my ole school!”
Those of us with children over the age of 18 can easily relate. At one point in my life I was teaching my three daughters – to put it delicately -- the basics of good hygiene. Somewhere along the way our roles got reversed. Whatever happened to the wisdom of age? In a fast changing technological world it would seem, the older you get, the less you know.
I don’t want to become obsolete before my time, so I made a concerted effort this year to try and keep up and not be too “ole school”. For example, I asked my daughter Jessica to upload her music to my i-pod so I can learn what music kids are listening to these days. Still, I wouldn’t know Taylor Swift if you put her in a photo line-up. I would have to go to class to learn all the pop culture trivia my kids seem to know naturally. Popular culture was never my strong suit, even when I was a kid.
Every year I feel I am falling still further behind. I only recently heard about the movie that’s all the teenage rage -- Twilight and New Moon. The entire country was going nuts about the sequel before I even knew it was a bestselling book and hit movie. I would not have known about any of it were it not for a news report on CNBC about the box office take! I guess we are what we read or listen to.
In my quest to stay current, about six months ago I decided to register on Facebook, because I was curious about how these social networking sites work. Suddenly have 71 “friends” (many are people I knew in high school -- more like acquaintances than “friends” really.) Nevertheless, my “friends” post something about their day, every day. And if that is not enough, I can follow them on Twitter and learn about their every passing thought or emotion. Do I really want to know that much about them? No, I don’t think so. (And I’m quite sure they really don’t know (or care to know) that much about me.)
My daughter June, on the other hand, is someone I DO care about and she sends me mostly nonsensical “tweets” on a regular basis. I love to get these inane blurbs, but half the time I have no idea what she is talking about. For example, the latest tweet she sent was “Hello Wednesday. I thought you were Friday.” (She sends news flashes like this at 9 PM Hawaiian time, causing my cell phone to alert for an income message at 3 AM.) Huh? Hello? I tweet back: “Forget about what day it is…what planet are you on? Love Dad. ”
Keeping in touch is an act of love…or at least it use to be. But with all the “communicating” going on these days –through cell phones, texting, e-mailing, social networks and the like -- what is there left to say of substance in a Christmas card or letter? It may be “ole school” but I still love getting a Christmas card or letter with a hand written note from people you really know and love.
May God bless us all with love, happiness, peace, good health and prosperity! Now, let’s go make 2010 another unforgettable year!
Last year Eric wrote about how his boys “once hung on his every word and now hang him with every word.” In the old days, he says, “he served as a fount of advice” for his children. Now any suggestion he makes is “met with rolling eyes, heaving sighs and cries of “ole school!”” Eric writes with a wink: “They are not as smart as they think. I’m still lucid enough to have them removed from my will. That’s how we roll in my ole school!”
Those of us with children over the age of 18 can easily relate. At one point in my life I was teaching my three daughters – to put it delicately -- the basics of good hygiene. Somewhere along the way our roles got reversed. Whatever happened to the wisdom of age? In a fast changing technological world it would seem, the older you get, the less you know.
I don’t want to become obsolete before my time, so I made a concerted effort this year to try and keep up and not be too “ole school”. For example, I asked my daughter Jessica to upload her music to my i-pod so I can learn what music kids are listening to these days. Still, I wouldn’t know Taylor Swift if you put her in a photo line-up. I would have to go to class to learn all the pop culture trivia my kids seem to know naturally. Popular culture was never my strong suit, even when I was a kid.
Every year I feel I am falling still further behind. I only recently heard about the movie that’s all the teenage rage -- Twilight and New Moon. The entire country was going nuts about the sequel before I even knew it was a bestselling book and hit movie. I would not have known about any of it were it not for a news report on CNBC about the box office take! I guess we are what we read or listen to.
In my quest to stay current, about six months ago I decided to register on Facebook, because I was curious about how these social networking sites work. Suddenly have 71 “friends” (many are people I knew in high school -- more like acquaintances than “friends” really.) Nevertheless, my “friends” post something about their day, every day. And if that is not enough, I can follow them on Twitter and learn about their every passing thought or emotion. Do I really want to know that much about them? No, I don’t think so. (And I’m quite sure they really don’t know (or care to know) that much about me.)
My daughter June, on the other hand, is someone I DO care about and she sends me mostly nonsensical “tweets” on a regular basis. I love to get these inane blurbs, but half the time I have no idea what she is talking about. For example, the latest tweet she sent was “Hello Wednesday. I thought you were Friday.” (She sends news flashes like this at 9 PM Hawaiian time, causing my cell phone to alert for an income message at 3 AM.) Huh? Hello? I tweet back: “Forget about what day it is…what planet are you on? Love Dad. ”
Keeping in touch is an act of love…or at least it use to be. But with all the “communicating” going on these days –through cell phones, texting, e-mailing, social networks and the like -- what is there left to say of substance in a Christmas card or letter? It may be “ole school” but I still love getting a Christmas card or letter with a hand written note from people you really know and love.
May God bless us all with love, happiness, peace, good health and prosperity! Now, let’s go make 2010 another unforgettable year!
Wednesday, December 2, 2009
Christmas Memories
I’ve always found it difficult to get into the holiday spirit living in Florida. Warm weather is somehow just not conducive to the joy of the holiday season.
I suppose the reason has to do with growing up in cold weather climates when I was a kid. I remember the years my family lived in Syracuse, New York. We had a snow-covered Christmas every year. Our house had a plate glass window in the living room on the second floor overlooking the front yard and street below. Our Christmas tree would be set near the living room window for all to see. On Christmas Eve the neighbors would line the street with brown paper bags weighted with sand to holding small candles. The candles were lit after dark and the street, lined on both sides with these glowing bags, would look like a runway landing. I remember taking in this scene standing at our living room window, scanning the sky for Santa’s sleigh. There was house to house caroling on Christmas Eve and I remember one year Santa rode through the neighborhood on a fire truck throwing candies to the children who came out in the snow to greet him. That was a very special time and I think it is the reason the weather has to be cold for me to recall the excitement of childhood in the Christmas season.
After Syracuse, we moved to Pennsylvania and Christmas was never quite the same. By that time I was no longer looking to the sky for Santa, I was scouring the closets to see what was hidden beneath the coats. A white Christmas was a rarity in Horsham, PA. We had neighbors, Harry and Beryl Davis, who were obsessed with decorating their house at Christmas. I remember the living room tree was an artificial, all white tree decorated with red ornaments. They collected Christmas decorations and, in their den, they constructed an elaborate miniature Bavarian mountain village underneath a real tree with a toy train set running though it, tunnels and all. We always had fun with the Davis family at Christmas and New Years. To this day I still exchange Christmas cards with Harry and Beryl, even though I have not seen them in 30 years.
After my time in PA, I moved further south to Washington DC, where I attended George Washington University. I joined the school chorus as a freshman and learned to sing Handel’s Messiah for our annual Christmas concert. That first year we put on a joint production with Georgetown, American and Catholic University. It was an event attended by the Washington glitterati in formal attire. The venue was a Gothic chapel on the Georgetown Campus. It was a magical night when 200 student voices came together with the symphony to sing the Messiah to this crowd. To this day it does not feel like Christmas to me without hearing a live performance of the Messiah. When I do hear it, I get choked up. To me that glorious music is the voice of God.
The most idyllic Christmas I ever spent was in Jackson Hole when my kids were still little. I remember taking Paula and June to pick out a Christmas tree in the national forest and then dragging the tree (and the kids) down a mountain through the woods in waist-high snow. (That part was not fun for any of us!) We had a place that looked out to the Grand Tetons and we put up the freshly cut tree in the living room, near a stone fireplace. That Christmas I took a snowmobile ride through Yellowstone National Park in minus 40 degree weather, from the South Entrance to Ole Faithful, roughly 120 miles round trip. It was a picture postcard winter wonderland that I will never ever forget.
No, Christmas in Florida does not compare. Still, I’m glad to be alive and here to enjoy yet another Christmas. Next year maybe we’ll go somewhere cold?
I suppose the reason has to do with growing up in cold weather climates when I was a kid. I remember the years my family lived in Syracuse, New York. We had a snow-covered Christmas every year. Our house had a plate glass window in the living room on the second floor overlooking the front yard and street below. Our Christmas tree would be set near the living room window for all to see. On Christmas Eve the neighbors would line the street with brown paper bags weighted with sand to holding small candles. The candles were lit after dark and the street, lined on both sides with these glowing bags, would look like a runway landing. I remember taking in this scene standing at our living room window, scanning the sky for Santa’s sleigh. There was house to house caroling on Christmas Eve and I remember one year Santa rode through the neighborhood on a fire truck throwing candies to the children who came out in the snow to greet him. That was a very special time and I think it is the reason the weather has to be cold for me to recall the excitement of childhood in the Christmas season.
After Syracuse, we moved to Pennsylvania and Christmas was never quite the same. By that time I was no longer looking to the sky for Santa, I was scouring the closets to see what was hidden beneath the coats. A white Christmas was a rarity in Horsham, PA. We had neighbors, Harry and Beryl Davis, who were obsessed with decorating their house at Christmas. I remember the living room tree was an artificial, all white tree decorated with red ornaments. They collected Christmas decorations and, in their den, they constructed an elaborate miniature Bavarian mountain village underneath a real tree with a toy train set running though it, tunnels and all. We always had fun with the Davis family at Christmas and New Years. To this day I still exchange Christmas cards with Harry and Beryl, even though I have not seen them in 30 years.
After my time in PA, I moved further south to Washington DC, where I attended George Washington University. I joined the school chorus as a freshman and learned to sing Handel’s Messiah for our annual Christmas concert. That first year we put on a joint production with Georgetown, American and Catholic University. It was an event attended by the Washington glitterati in formal attire. The venue was a Gothic chapel on the Georgetown Campus. It was a magical night when 200 student voices came together with the symphony to sing the Messiah to this crowd. To this day it does not feel like Christmas to me without hearing a live performance of the Messiah. When I do hear it, I get choked up. To me that glorious music is the voice of God.
The most idyllic Christmas I ever spent was in Jackson Hole when my kids were still little. I remember taking Paula and June to pick out a Christmas tree in the national forest and then dragging the tree (and the kids) down a mountain through the woods in waist-high snow. (That part was not fun for any of us!) We had a place that looked out to the Grand Tetons and we put up the freshly cut tree in the living room, near a stone fireplace. That Christmas I took a snowmobile ride through Yellowstone National Park in minus 40 degree weather, from the South Entrance to Ole Faithful, roughly 120 miles round trip. It was a picture postcard winter wonderland that I will never ever forget.
No, Christmas in Florida does not compare. Still, I’m glad to be alive and here to enjoy yet another Christmas. Next year maybe we’ll go somewhere cold?
Heart and Passion Make a Difference
Have you ever heard someone speak about something so passionately and with so much heart that it makes you want to act? As a volunteer involved with many community organizations I am exposed to heartfelt passion on a regular basis. But I have to say that I was truly stunned by the heart and passion of Mike Riley, a fellow Rotarian, who recently organized a dance to raise money needed to build an adaptive playground for the kids of Charlotte Harbor School. Riley auctioned off one of his prized possessions –a guitar signed by Bruce Springsteen, which fetched over $3,000 at the event. What a selfless and generous act! I am proud to be counted among Riley’s friends. (Everyone who knows him calls him Riley. No one calls him Mike, not even his lovely Julie.)
What stunned me was the passion Riley has for these kids. I guess we all go around a bit with a “woe is me” attitude. Everybody has struggles and challenges that they have to deal with in their lives. But let’s face it some challenges are greater than others. Sometimes just imagining what it is like to walk in someone else’s shoes is all it takes to be motivated to act and do something for someone else.
I have always been healthy and physically active. I played football and baseball as a kid, I ran track and cross country in high school, I played tennis and racket ball, I was a horseman, a skier, and now I’m a golfer. Until I was diagnosed with cancer, I was never faced with any physical or mental challenges. I still don’t have these challenges (except for a little worsening eyesight) and I am frankly afraid of what is to come if the cancer spreads. I think about what Riley said when he was pitching his concert for the adaptive playground. Imagine, he said, a childhood where you could not safely swing on a swing, climb a jungle gym, or ride a teeter totter. Imagine living life without activities like skiing, golf or tennis, a childhood without football baseball or basketball, roller skating, or swimming. As I listened to Riley, I imagined my life with a brain tumor or some other cancer related ailment that would keep me from golfing, riding my bike, swimming at the beach, reading a book or traveling to some distant land. Suddenly I could imagine what it would be like to have cerebral palsy, autism, or one of the many other afflictions that steals simple pleasures from the lives of the kids at the Charlotte Harbor School. I realize how lucky I am to have been to be born with all my limbs and mental acuity. Now that I am faced with the possibility of one day losing these things I have gained a better awareness of the challenges these kids have faced from the day they were born. Nothing in my life compares and I will never complain if after 54 good years I am stricken by a physical or mental impairment.
As a community we need to thank the Murdock Rotary Club for having the imagination, humanity, determination and guts to undertake a project of this magnitude. The adaptive playground will cost $250,000 to build. Murdock Rotary has been working on raising the cash needed for the past three years and, thanks to Riley, they are $15,000 closer to reaching their goal, which they hope to achieve this month.
In this season of giving, we should all take a lesson from Riley. Reach deep and sacrifice a little to help truly needed kids get what we who are able bodied take for granted. If you would like to give to a worthy cause consider helping the Murdock Rotary with a Christmas gift donation for the adaptive playground project. Make checks payable to Murdock Rotary Foundation, PO Box 380982, Murdock, FL. 33938-0982 or contact Lance Petersen, Murdock Rotary Club President, at 941-766-1873 for further details about the project.
What stunned me was the passion Riley has for these kids. I guess we all go around a bit with a “woe is me” attitude. Everybody has struggles and challenges that they have to deal with in their lives. But let’s face it some challenges are greater than others. Sometimes just imagining what it is like to walk in someone else’s shoes is all it takes to be motivated to act and do something for someone else.
I have always been healthy and physically active. I played football and baseball as a kid, I ran track and cross country in high school, I played tennis and racket ball, I was a horseman, a skier, and now I’m a golfer. Until I was diagnosed with cancer, I was never faced with any physical or mental challenges. I still don’t have these challenges (except for a little worsening eyesight) and I am frankly afraid of what is to come if the cancer spreads. I think about what Riley said when he was pitching his concert for the adaptive playground. Imagine, he said, a childhood where you could not safely swing on a swing, climb a jungle gym, or ride a teeter totter. Imagine living life without activities like skiing, golf or tennis, a childhood without football baseball or basketball, roller skating, or swimming. As I listened to Riley, I imagined my life with a brain tumor or some other cancer related ailment that would keep me from golfing, riding my bike, swimming at the beach, reading a book or traveling to some distant land. Suddenly I could imagine what it would be like to have cerebral palsy, autism, or one of the many other afflictions that steals simple pleasures from the lives of the kids at the Charlotte Harbor School. I realize how lucky I am to have been to be born with all my limbs and mental acuity. Now that I am faced with the possibility of one day losing these things I have gained a better awareness of the challenges these kids have faced from the day they were born. Nothing in my life compares and I will never complain if after 54 good years I am stricken by a physical or mental impairment.
As a community we need to thank the Murdock Rotary Club for having the imagination, humanity, determination and guts to undertake a project of this magnitude. The adaptive playground will cost $250,000 to build. Murdock Rotary has been working on raising the cash needed for the past three years and, thanks to Riley, they are $15,000 closer to reaching their goal, which they hope to achieve this month.
In this season of giving, we should all take a lesson from Riley. Reach deep and sacrifice a little to help truly needed kids get what we who are able bodied take for granted. If you would like to give to a worthy cause consider helping the Murdock Rotary with a Christmas gift donation for the adaptive playground project. Make checks payable to Murdock Rotary Foundation, PO Box 380982, Murdock, FL. 33938-0982 or contact Lance Petersen, Murdock Rotary Club President, at 941-766-1873 for further details about the project.
Making Milestones
When I was first diagnosed with lung cancer in late 2007, Yoko and I went to see my daughter Jessica in Tallahassee, who was then a first year freshman at Florida State. At the time, I really did not think I would live to see her graduate from college. Now, two years later, she is finishing her first semester as a junior. Next year at this time she’ll be a senior and I will be one step closer to seeing all of my girls finish their undergraduate degrees.
When you have cancer you begin living your life with mental goals or milestones. In the early days you are just trying to get through treatments and live. If you are lucky enough to come out on the other side, like me, you begin to set goals for yourself. My first goal was to live long enough to see Paula married. Then I wanted to be well enough to take a once in a lifetime trip. (Yoko and I took a luxury three-week tour of Italy last year.) Now I want to live long enough to see Jessica graduate from college.
I have other things on my “bucket list” I would like to do. For example, I use to be a fairly accomplished horseman (dressage and show jumping); I always dreamed it would be fun go horseback riding on the open plains of Mongolia. I actually made it to Harbin, Manchuria one year on business but never made it to Mongolia. It’s one of a number of countries in Asia I have not visited and would one day like to see.
As it so happens, Rotary District 6960 is organizing a Group Study Exchange with a district in Eastern Siberia in May of 2010, just six months from now. It is a five week trip to Russia that I would love to make. As you might imagine, there is a lot of preparation to go on a trip like this. The group going trains together for about six months. Being an East Asian scholar of sorts I was thinking of volunteering to lead the GSE team to Siberia and afterward take a week to go riding in Mongolia. This is definitely a trip I would have to do alone (Yoko wants no part of this dream), but what an adventure would be! There’s only one problem. I am not scheduled for another Pet/CT until April, 2010. What if I discover cancer on my next scan?
Changing gears for just a second… Last week our community lost another dear friend and a man with a heart of gold, Bill van Dyk, to cancer. Bill was in the 2004 Leadership Charlotte Class with me and had won his battle with cancer years ago. He never made much of his original cancer diagnosis and you would not have known he had a recurrence until recently. He fought hard and I was somewhat dismayed at how rapidly he declined once the cancer spread. My heart goes out to his wife and family this holiday season. I think to myself, there but for the grace of God go I.
Cancer patients in remission are conscious of the fact that the beast can return at any time. For lung cancer patients, it is not just possible – it is probable. I for one wake up every day conscious of the fact that the clock is ticking. Time passes quickly and there is no time to waste.
Tomorrow I have an appointment to see Dr. Rioux about removing my port. I have had the port for two years and it is a constant reminder of my cancer diagnosis. While I am at it, I am going to schedule a colonoscopy, which I should have done years ago. After that I will decide whether a trip to Siberia or horseback riding in Mongolia is in the cards. Let’s hope!
When you have cancer you begin living your life with mental goals or milestones. In the early days you are just trying to get through treatments and live. If you are lucky enough to come out on the other side, like me, you begin to set goals for yourself. My first goal was to live long enough to see Paula married. Then I wanted to be well enough to take a once in a lifetime trip. (Yoko and I took a luxury three-week tour of Italy last year.) Now I want to live long enough to see Jessica graduate from college.
I have other things on my “bucket list” I would like to do. For example, I use to be a fairly accomplished horseman (dressage and show jumping); I always dreamed it would be fun go horseback riding on the open plains of Mongolia. I actually made it to Harbin, Manchuria one year on business but never made it to Mongolia. It’s one of a number of countries in Asia I have not visited and would one day like to see.
As it so happens, Rotary District 6960 is organizing a Group Study Exchange with a district in Eastern Siberia in May of 2010, just six months from now. It is a five week trip to Russia that I would love to make. As you might imagine, there is a lot of preparation to go on a trip like this. The group going trains together for about six months. Being an East Asian scholar of sorts I was thinking of volunteering to lead the GSE team to Siberia and afterward take a week to go riding in Mongolia. This is definitely a trip I would have to do alone (Yoko wants no part of this dream), but what an adventure would be! There’s only one problem. I am not scheduled for another Pet/CT until April, 2010. What if I discover cancer on my next scan?
Changing gears for just a second… Last week our community lost another dear friend and a man with a heart of gold, Bill van Dyk, to cancer. Bill was in the 2004 Leadership Charlotte Class with me and had won his battle with cancer years ago. He never made much of his original cancer diagnosis and you would not have known he had a recurrence until recently. He fought hard and I was somewhat dismayed at how rapidly he declined once the cancer spread. My heart goes out to his wife and family this holiday season. I think to myself, there but for the grace of God go I.
Cancer patients in remission are conscious of the fact that the beast can return at any time. For lung cancer patients, it is not just possible – it is probable. I for one wake up every day conscious of the fact that the clock is ticking. Time passes quickly and there is no time to waste.
Tomorrow I have an appointment to see Dr. Rioux about removing my port. I have had the port for two years and it is a constant reminder of my cancer diagnosis. While I am at it, I am going to schedule a colonoscopy, which I should have done years ago. After that I will decide whether a trip to Siberia or horseback riding in Mongolia is in the cards. Let’s hope!
Wednesday, November 11, 2009
Scanxiety
I had my quarterly PET/CT scans today. Since being diagnosed I have had these scans and blood tests done every three months, looking for evidence of cancer. To date, I have gotten through the exams with nothing but good news. The four little words I want to hear each time is we find "no evidence of disease." It doesn't mean you are cured. It means that there is nothing obvious going on that the doctors can detect. The disease is ALWAYS there, lurking. You are never cured. Cancer patients live with the disease and hope and pray to keep it at bay.
You become somewhat fatalistic, steeling yourself for bad news each time. You hope and pray for good news knowing deep down that one day the news will not be so good. Yes, people can live for many years with cancer, and you hope to be one of them. That does not stop you, however, from becoming anxious around scan time. I call it "scanxiety."
In the past two years I must have had close to a dozen scans. At first I was not bothered by the PET/CT (and could not understand people who are) until a scan I had in January of 2008.
The procedure involves the radiology center preping you by injecting a radioactive isotope, which needs to circulate in your body for about an hour. After that, you are taken to the PET/CT machine. The CT scan is a relatively quick procedure and maybe takes 5 minutes -- in and out. The full body PET scan, however, takes about 25 minutes normally.
For lung cancer, the technicans position you on a table with your arms above your head and straps you down to keep you from moving. You are told to "stay still and don't move". The technicians then leave the room and the lights are dimmed. The machine starts up with a soft whirring noize and the table slowly slides you into the tube.
You would think, what's the big deal? But that 25 minutes in the machine, with nothing but white walls of the tube surrounding you was the longest 25 minutes of my life, the first time I did it. The second time I did it in January of 2008 I was already apprehensive about the scan. That day the radiology center was having trouble with newly installed software that runs the machine. The computer kept crashing so the scan took nearly an hour. Toward the end I felt like I was being tortured. My fingers were numb and I became increasingly restless and panicy. The best way I can think to describe it is the feeling of slowly drowning and becoming increasingly more desparate to reach the surface. I was never so happy when that intermitable test finally finished
Ever since that scan, I have to have a sedative with my injection to get me in a relaxed state. Yoko comes with me to hold my hand and stimulate me during the test. I also bring my i-pod along as a way of measuring the time and having something other than the what walls of the machine to focus on. These days I am getting through the scans more easily and my anxiety is less than it was. Let's hope the results continue to be good.
You become somewhat fatalistic, steeling yourself for bad news each time. You hope and pray for good news knowing deep down that one day the news will not be so good. Yes, people can live for many years with cancer, and you hope to be one of them. That does not stop you, however, from becoming anxious around scan time. I call it "scanxiety."
In the past two years I must have had close to a dozen scans. At first I was not bothered by the PET/CT (and could not understand people who are) until a scan I had in January of 2008.
The procedure involves the radiology center preping you by injecting a radioactive isotope, which needs to circulate in your body for about an hour. After that, you are taken to the PET/CT machine. The CT scan is a relatively quick procedure and maybe takes 5 minutes -- in and out. The full body PET scan, however, takes about 25 minutes normally.
For lung cancer, the technicans position you on a table with your arms above your head and straps you down to keep you from moving. You are told to "stay still and don't move". The technicians then leave the room and the lights are dimmed. The machine starts up with a soft whirring noize and the table slowly slides you into the tube.
You would think, what's the big deal? But that 25 minutes in the machine, with nothing but white walls of the tube surrounding you was the longest 25 minutes of my life, the first time I did it. The second time I did it in January of 2008 I was already apprehensive about the scan. That day the radiology center was having trouble with newly installed software that runs the machine. The computer kept crashing so the scan took nearly an hour. Toward the end I felt like I was being tortured. My fingers were numb and I became increasingly restless and panicy. The best way I can think to describe it is the feeling of slowly drowning and becoming increasingly more desparate to reach the surface. I was never so happy when that intermitable test finally finished
Ever since that scan, I have to have a sedative with my injection to get me in a relaxed state. Yoko comes with me to hold my hand and stimulate me during the test. I also bring my i-pod along as a way of measuring the time and having something other than the what walls of the machine to focus on. These days I am getting through the scans more easily and my anxiety is less than it was. Let's hope the results continue to be good.
Tuesday, November 10, 2009
The Jaunt to Jacksonville
My friend Julia Stroud is battling lung cancer. Like me Julia organized a Free to Breathe 5K Run/Walk in Jacksonville on November 7th. Yoko and I decided to go up there to support Julia and to see how a larger event is run. (Julia's event had 860 participants who together raised nearly $85,000 for lung cancer research.)Yoko and I were really impressed by the level of dedication and passion Julia and her volunteers have for the lung cancer movement. Maybe we are beginning to make an impact and be heard? One of her event participants, who has been battling Stage IV lung cancer for 4 years, raised over $24,000 from family and friends. If I could get equally dedicated people next year maybe we could raise $60,000 in our Punta Gorda event. Let me know if you would like to form a team to help raise lung cancer awareness. We're starting to plan next year's event right now.
We made it up to Jacksonville Friday night November 6th, in time for a pasta dinner at Our Lady of the Seas in Ponte Verde. Some of the members of the church had volunteered to put on the dinner for all the runners and walkers. At least 120 people, maybe more, were there. As we entered the church hall there was a group singing gospel music and entertaining the crowd and decorations making the place look like a Fourth of July celebration. At the entrance were hand painted signs congratulating the 12 survivors who had signed up to participate. My name was among the honored few. It felt like a party for those of us who live with this deadly disease.
After the 5K walk Saturday morning Yoko and I drove down to St Augustine had lunch and then tooled around the historic downtown till late afternoon. At sunset we walked St Augustine beach, which was deserted. It was cool and the sky was clear. As the sun went down the sky had that distinctive Florida pink and blue hue. The sun was reflecting off the heavy surf as it rolled in. It was really quite beautiful and one of those moments when you think to yourself what a gift it is to be alive and live in such an idyllic setting.
On Sunday morning we drove to the famous World Golf Village to see if I could get a tee time to play the Slammer & Squire (designed by Sam (The Slammer) Snead and Gene (The Squire) Sarasen and The King and The Bear (the handiwork of Arnold Palmer and Jack Nicklaus). As it turned out, getting a tee time was easy. Playing the course was an entirely different matter. We had beautiful weather both on Sunday and Monday. Yoko rode with me on Sunday (she didn't want to play). On Monday, she went shopping while I hooked up with a threesome visiting from New York.
Today I got my latest scans back. Everything is good -- like I never had lung cancer. I am starting to wonder if I can really be this lucky -- a healthy and happy family, the finest friends, a good job, and year-long golf in glorious weather. If I died and went to heaven life couldn't be better.
Sunday, November 1, 2009
True Friends Make a Difference
Yesterday we had the Free to Breathe 5K Run/Walk and One Mile Memorial Walk. I can't tell you how gratifying it was to see over 300 people out at the Charlotte Sport Park. About 50 volunteers (many of them friends of mine) were there at 5 AM to help set up for the event.
It seems like it would be a fairly simple thing to get ready for a running event, but the fact is it took about 5 months of preparation. I devoted half of Thursday and all day Friday with my friend Brian Brunderman, getting supplies in place. I hardly slept a wink Friday night, trying to think of things I had overlooked. It was a relief when it all came together and everything went off smoothly, thanks to my volunteer friends. It got me to thinking about how important friendships are in your life. There is really not much we accomplish on our own.
I'm an active member of an online support group for lung cancer patients. Sadly, it is not unusual to hear about cancer patients who are abandoned by their friends and family. One online lung cancer patient recently bemoaned the fact that her best friend said "goodbye" to her during treatment. The "friend" did not want to watch her suffer. "I can't handle this." was the last thing she said to her cancer stricken friend. She has not been heard from since.
It seems like it would be a fairly simple thing to get ready for a running event, but the fact is it took about 5 months of preparation. I devoted half of Thursday and all day Friday with my friend Brian Brunderman, getting supplies in place. I hardly slept a wink Friday night, trying to think of things I had overlooked. It was a relief when it all came together and everything went off smoothly, thanks to my volunteer friends. It got me to thinking about how important friendships are in your life. There is really not much we accomplish on our own.
I'm an active member of an online support group for lung cancer patients. Sadly, it is not unusual to hear about cancer patients who are abandoned by their friends and family. One online lung cancer patient recently bemoaned the fact that her best friend said "goodbye" to her during treatment. The "friend" did not want to watch her suffer. "I can't handle this." was the last thing she said to her cancer stricken friend. She has not been heard from since.
I guess I can understand. No one wants to watch a loved one suffer. But to be honest, it is family and friendships that keep cancer patients fighting. It is their reason to live and there is no more an important time to show a family member that you love them or show a friend that you care. People are often at a loss regarding what to do or say when someone they know is diagnosed with cancer. Take my advice, the best thing you can do is be a friend and be in touch. One of my lifelong friends, Eric Madsen, calls me once a month just to "touch base" and see how I am doing. It means a lot to me to get such phone calls -- just to know that people care.
I've been very lucky to have very supportive family and friends. The Free to Breathe event is just the latest example. Daughter Jessica came home from Tallahassee (and missed homecoming weekend) to be here to help. That was a really nice thing for her to do and totally unexpected. And, of course I can always rely on my wife, Yoko, who I too often take for granted.
But then there are special friends like Brian Brunderman, a highly reputable general contractor who has been building homes and commercial buildings in our area for over 20 years. Brian is one of my best friends. He is the kind of guy who would give you the shirt off his back if you needed it. Brian exemplifies Rotary's motto of "service above self." Not only was he my right hand man in preparing for the Free to Breathe event, he and his wife Lori created a team that raised over $1000 dollars for lung cancer research. Brian was "all in" from the minute I asked for his help. He knows I would do anything for him too. (He rebuilt my home after Charley. If you need a custom builder, there is no one in the county who could do a better job.) If you have a project for Brian, let me know. I’d like come through for friends like Brian the way he has come through for me!
Tuesday, October 27, 2009
The Joy of "Living with Cancer"
For the past year I have been writing about what it is like to live with a diagnosis of cancer. My column is published in the Charlotte Sun’s “Feeling Fit” section each Sunday. It has been a joy to write for the newspaper each week and then to receive feedback and encouragement from the Sun’s readership. My purpose in writing the column was to provide hope and encouragement to other cancer patients – and there are many in our community. What I have received instead is love and prayers from many readers.
Any cancer diagnosis is devastating. The biggest question in the minds of newly diagnosed cancer patients is “what comes next.” My column was intended to provide cancer patients a vision of a future living with cancer. My message has been that cancer is NOT a death sentence, but something we eventually come to terms with and, in time, learn to live with.
As a result of writing a weekly column on cancer, I have been asked to serve as honorary chair of the Port Charlotte Relay for Life representing cancer survivors. I’m honored and I am more than glad to do it, although I question my credentials.
Since being diagnosed with cancer, I’ve wondered about the term “survivor” as it is typically applied. In current usage it seems that a “survivor” is anyone diagnosed with cancer who is not dead. But after my diagnosis I learned that, in the medical world, cancer survivorship is measured by living five years or more from the date of diagnosis. Technically, to be a survivor, don’t I have to live five or more years? It has been just two years since my diagnosis of inoperable Stage IIIA adenocarcenoma, which has a survivorship rate of about 15 percent. Don’t I have at least three more years before I am officially a survivor and not a victim?
I consider myself to be a victim of cancer ….but I aspire to be a survivor and to lead my life in an exemplary way. My cancer diagnosis has, for me, made clear my mission in life, which is to help others and make every day count. My life is a blessing not to be wasted. I’ve come to realize that material things in life do not make you rich. The real measure of the value of your life is what you do for others.
Being part of Relay for Life is another opportunity to make a contribution to the lives of others, and I am glad to be a part of it. Thank you to everyone who helps our common cause to beat cancer and help cancer patients continue to lead rich and fulfilling lives!
If you are interested in becoming involved in Relay for Life and creating a team to benefit our local American Cancer Society, contact Amanda Tiseo at c_a_tiseo@comcast.net
Any cancer diagnosis is devastating. The biggest question in the minds of newly diagnosed cancer patients is “what comes next.” My column was intended to provide cancer patients a vision of a future living with cancer. My message has been that cancer is NOT a death sentence, but something we eventually come to terms with and, in time, learn to live with.
As a result of writing a weekly column on cancer, I have been asked to serve as honorary chair of the Port Charlotte Relay for Life representing cancer survivors. I’m honored and I am more than glad to do it, although I question my credentials.
Since being diagnosed with cancer, I’ve wondered about the term “survivor” as it is typically applied. In current usage it seems that a “survivor” is anyone diagnosed with cancer who is not dead. But after my diagnosis I learned that, in the medical world, cancer survivorship is measured by living five years or more from the date of diagnosis. Technically, to be a survivor, don’t I have to live five or more years? It has been just two years since my diagnosis of inoperable Stage IIIA adenocarcenoma, which has a survivorship rate of about 15 percent. Don’t I have at least three more years before I am officially a survivor and not a victim?
I consider myself to be a victim of cancer ….but I aspire to be a survivor and to lead my life in an exemplary way. My cancer diagnosis has, for me, made clear my mission in life, which is to help others and make every day count. My life is a blessing not to be wasted. I’ve come to realize that material things in life do not make you rich. The real measure of the value of your life is what you do for others.
Being part of Relay for Life is another opportunity to make a contribution to the lives of others, and I am glad to be a part of it. Thank you to everyone who helps our common cause to beat cancer and help cancer patients continue to lead rich and fulfilling lives!
If you are interested in becoming involved in Relay for Life and creating a team to benefit our local American Cancer Society, contact Amanda Tiseo at c_a_tiseo@comcast.net
Sunday, October 25, 2009
November is Lung Cancer Awareness Month
By the time this article is in print the Free to Breathe 5K Run/Walk and One Mile Memorial Walk will have ended. I have been very busy in the last few months trying to get the event organized. I am looking forward to sharing the day with my many friends and supporters. Thank you to all who ran, walked, volunteered and donated to make our inaugral event a success. I'm so grateful to you all!
Yoko and I are attending another Free to Breathe event on November 7th in Jacksonville, being organized by my friend Julia Stoud. Julia and I met at the National Lung Cancer Partnership's Lung Cancer Advocate Summit held in Dallas in April of this year. Julia use to work as a stockbroker and is a lung cancer survivor. Like me, she was shocked to learn how little funding lung cancer research receives, despite the fact that it is the number one cancer killer. We are now working together and hope to become the organizers of the Florida Chapter of the National Lung Cancer Partnership. Our goal is to enlist like minded people to help us do Free to Breathe events all over the state of Florida. We'd like to build our effort into something that marks November as lung cancer awareness month, the way October is associated with breast cancer. We have a very long way to go.
I must say, these days I am feeling pretty lucky. After getting my diagnosis, I hoped to live long enough to see my oldest daughter get married, which I did in June of 2008. Here we are, more than a year and a half later, and I am still going strong. I've been able to write a column in the Sun each week, be involved in numerous charitable activities, play golf, continue to build my business, travel, and in general do all the things we've always done.
There are still a lot of things I would like to do. Today on the 16th hole of Bobcat Trail I hit a good drive down the center of the fairway and had 179 yards left to the pin. I took out my 5 wood and hit a clean second shot with plenty of distance straight at the pin. When we got to the green, I looked for my ball but didn't see it. At first I thought I had it it too far, but then I noticed a ball mark 10 feet in front of the pin. I walked up to the pin and there was my ball at the bottom of the cup. Life doen't get any better.
Yoko and I are attending another Free to Breathe event on November 7th in Jacksonville, being organized by my friend Julia Stoud. Julia and I met at the National Lung Cancer Partnership's Lung Cancer Advocate Summit held in Dallas in April of this year. Julia use to work as a stockbroker and is a lung cancer survivor. Like me, she was shocked to learn how little funding lung cancer research receives, despite the fact that it is the number one cancer killer. We are now working together and hope to become the organizers of the Florida Chapter of the National Lung Cancer Partnership. Our goal is to enlist like minded people to help us do Free to Breathe events all over the state of Florida. We'd like to build our effort into something that marks November as lung cancer awareness month, the way October is associated with breast cancer. We have a very long way to go.
I must say, these days I am feeling pretty lucky. After getting my diagnosis, I hoped to live long enough to see my oldest daughter get married, which I did in June of 2008. Here we are, more than a year and a half later, and I am still going strong. I've been able to write a column in the Sun each week, be involved in numerous charitable activities, play golf, continue to build my business, travel, and in general do all the things we've always done.
There are still a lot of things I would like to do. Today on the 16th hole of Bobcat Trail I hit a good drive down the center of the fairway and had 179 yards left to the pin. I took out my 5 wood and hit a clean second shot with plenty of distance straight at the pin. When we got to the green, I looked for my ball but didn't see it. At first I thought I had it it too far, but then I noticed a ball mark 10 feet in front of the pin. I walked up to the pin and there was my ball at the bottom of the cup. Life doen't get any better.
Sunday, September 27, 2009
Fighting the Stigma of Lung Cancer
Something happened the other day that I am ashamed to tell you about. I snapped. Here's what happened. I went over to the Punta Gorda office of State Representative Paige Kreegle to pick up the proclamation made by Governor Crist declaring November as Lung Cancer Awareness month. I was talking with his administrative aid, Zac, who had kindly done the work necessary to get the Governor to make the proclamation and I found myself yelling at him for a passing comment he innocently made as I was leaving the office. The comment was something to the effect of "Yeah, Paige can really get behind this (Free to Breathe 5K lung cancer awareness) event. He hates smoking." It was the last three words that set me off. "This is not about smoking," I said, "it's about LUNG CANCER!"
I tried to straighten out the young man, by explaining something to him. I should have been calmer, but it raised the hair on the back of my head and I let go. (Sorry Zac. It is not you. It is the stigma surrounding lung cancer that makes me angry!)
I have found that the first words I am typically greeted with when someone learns I have lung cancer is, "oh, were you a smoker?" It is no wonder. To get people to quit smoking, we are constantly reminding them that smoking increases the risk of the developing the disease. It is natural to want to verify the relationship between lung cancer and smoking. But to those of us on the receiving end of such comments, there is an implication that we are to be blamed for bring the disease on ourselves. There is most definitely an attitude of "you did this to yourself, so live with the consequences." The starkest evidence is the lack of funding for lung cancer research and early detection.
Here are some facts that nobody wants to say outloud. Yes, we all want to see people quit smoking. Smoking is not good for you an is ONE OF the direct causes of not only lung cancer, but of other cancers and lung disease as well as heart disease. (Radon is also KNOWN to be a direct cause of lung cancer.) We need to make sure that young people never start smoking and avoid the addiction. Once you start smoking is a very difficult drug habit to break.
But the fact is that, even had I quit 10 or 20 years ago, I would STILL have had an elevated risk for developing lung cancer. Quiting does NOT eliminate the risk. That, of course, is not advertised because if long time smokers believed that they are going to contract lung cancer anyway, why quit? I understand the logic. The problem is that, because of the stigma of lung cancer, we are not investing in research for early detection and treatment. Lung cancer is the number one cancer killer, with one of the lowest survival rates, and gets the least amount of funding. Explain that to me.
This year there will be over 200,000 new cases of lung cancer diagnosed. Something like 10% - 15% of the new cases will be people who NEVER smoked. That is 20,000 - 30,000 cases a year. Over 100,000 of the new cases will be former smokers (people who quit prior to their diagnosis). So if you take these two groups together, about 60% of current lung cancer patients either never smoked or quit years ago. Who is really to blame here? The addicts and former addicts or a society that allows tobacco companies to sell their product without much regulation?
Lung cancer advocates like me have gotten together and are trying to do something about fighting the stigma of lung cancer. We feel that supportive care and sympathy (not blame) is particularly important to patients living with lung cancer. Lung cancer patients have feelings of guilt and are isolated by an unspoken stigma associated with their diagnosis.
The stigma does more than just blame smokers. It pushes the responsibility of the disease away from society where it belongs and onto the patients and their families, where it shames them into silence. This silence leads to fear, isolation and marked underfunding for the early detection and treatment of lung cancer. Twice as many women will die from lung cancer than breast cancer, but federal funding for breast cancer research this year is a record $1.1 billion; lung cancer, by comparison, will receive only $199 million, down from $240 million last year.
I am not ashamed to have lung cancer. I am a victim, like many of the 70 million former smokers, who were addicted to tobacco and finally quit. And I am fighting for all of the people who will eventually develop lung cancer. There needs to be an accepted screening protocol to detect lung cancer before it develops. That effort has the potential to save millions of lives. Help me by joining our Free to Breathe 5K Run Walk on October 31st! Go to www.freetobreathe.org to register now.
I tried to straighten out the young man, by explaining something to him. I should have been calmer, but it raised the hair on the back of my head and I let go. (Sorry Zac. It is not you. It is the stigma surrounding lung cancer that makes me angry!)
I have found that the first words I am typically greeted with when someone learns I have lung cancer is, "oh, were you a smoker?" It is no wonder. To get people to quit smoking, we are constantly reminding them that smoking increases the risk of the developing the disease. It is natural to want to verify the relationship between lung cancer and smoking. But to those of us on the receiving end of such comments, there is an implication that we are to be blamed for bring the disease on ourselves. There is most definitely an attitude of "you did this to yourself, so live with the consequences." The starkest evidence is the lack of funding for lung cancer research and early detection.
Here are some facts that nobody wants to say outloud. Yes, we all want to see people quit smoking. Smoking is not good for you an is ONE OF the direct causes of not only lung cancer, but of other cancers and lung disease as well as heart disease. (Radon is also KNOWN to be a direct cause of lung cancer.) We need to make sure that young people never start smoking and avoid the addiction. Once you start smoking is a very difficult drug habit to break.
But the fact is that, even had I quit 10 or 20 years ago, I would STILL have had an elevated risk for developing lung cancer. Quiting does NOT eliminate the risk. That, of course, is not advertised because if long time smokers believed that they are going to contract lung cancer anyway, why quit? I understand the logic. The problem is that, because of the stigma of lung cancer, we are not investing in research for early detection and treatment. Lung cancer is the number one cancer killer, with one of the lowest survival rates, and gets the least amount of funding. Explain that to me.
This year there will be over 200,000 new cases of lung cancer diagnosed. Something like 10% - 15% of the new cases will be people who NEVER smoked. That is 20,000 - 30,000 cases a year. Over 100,000 of the new cases will be former smokers (people who quit prior to their diagnosis). So if you take these two groups together, about 60% of current lung cancer patients either never smoked or quit years ago. Who is really to blame here? The addicts and former addicts or a society that allows tobacco companies to sell their product without much regulation?
Lung cancer advocates like me have gotten together and are trying to do something about fighting the stigma of lung cancer. We feel that supportive care and sympathy (not blame) is particularly important to patients living with lung cancer. Lung cancer patients have feelings of guilt and are isolated by an unspoken stigma associated with their diagnosis.
The stigma does more than just blame smokers. It pushes the responsibility of the disease away from society where it belongs and onto the patients and their families, where it shames them into silence. This silence leads to fear, isolation and marked underfunding for the early detection and treatment of lung cancer. Twice as many women will die from lung cancer than breast cancer, but federal funding for breast cancer research this year is a record $1.1 billion; lung cancer, by comparison, will receive only $199 million, down from $240 million last year.
I am not ashamed to have lung cancer. I am a victim, like many of the 70 million former smokers, who were addicted to tobacco and finally quit. And I am fighting for all of the people who will eventually develop lung cancer. There needs to be an accepted screening protocol to detect lung cancer before it develops. That effort has the potential to save millions of lives. Help me by joining our Free to Breathe 5K Run Walk on October 31st! Go to www.freetobreathe.org to register now.
Sunday, September 13, 2009
Moe Excercise
For the past year I have been trying to get Yoko to get up early with me to exercise. We purchased a treadmill while I was receiving chemo treatments as diet and exercise were to be an integral part of my road to recovery. There was only one thing wrong with the plan. It required that I find the time to do it on regular basis...and I have a pretty full schedule during my waking hours. The only time for exercise that would makes sense for me is early morning.
Unfortunately, I have never been an early riser. A few years ago I purchased bicycles for Yoko and I in the hope we would become regular early morning riders. Predictably, neither of us could get out of bed early enough to get dressed and fit in a vigorous rided before I had to be at work. So the bikes gathered dust in the garage. When I was diagnosed with cancer, I pledged that I would begin some sort of exercise routine. I bought the treadmill with the thought that I would roll out of bed and jog. Yeah, right. What was I thinking?
My latest plan to do regular exercise is working. In my desperation to find an exercise solution I decided to adopt a dog from the animal shelter. Besides saving a dog and making room in the local shelter, the need to walk a dog is a good incentive to get up in the morning.
Yoko and I went down to the animal shelter and looked at every dog they had. To say the least, Yoko was not in favor of getting a dog, but relented when I promised I would take care of her. The dog we selected is a 60 pound boxer mix. We named her Moe, based on the selection process we used -- inny, meany, miney....
When we got her a few months ago Moe was 10 months old and 60 lbs of licking and loving affection. And I was right. You can't ignore a 60 poung animal that wants to go out. Every morning Moe comes into the bedroom and licks my feet letting me know it is 6:30 AM and time to go for our daily walk. At first I kind of dreaded getting up at this hour, but it only took one time of ignoring her pleas to go to convince me I can't ignore her any more. I have gotten into the habit of getting up every morning, throwing on some clothes, hooking up my i-pod and taking Moe on a three mile walk. I take her on a shorter walk in the evening when I get home.
I am using the 3 mile walk as training to participate in the Free to Breathe 5 K Run/Walk planned for Punta Gorda on October 31st. Right now it takes me about 40 minutes to walk this distance. I am hoping to develop my regular walk into a run over time. Won't you join me?
Unfortunately, I have never been an early riser. A few years ago I purchased bicycles for Yoko and I in the hope we would become regular early morning riders. Predictably, neither of us could get out of bed early enough to get dressed and fit in a vigorous rided before I had to be at work. So the bikes gathered dust in the garage. When I was diagnosed with cancer, I pledged that I would begin some sort of exercise routine. I bought the treadmill with the thought that I would roll out of bed and jog. Yeah, right. What was I thinking?
My latest plan to do regular exercise is working. In my desperation to find an exercise solution I decided to adopt a dog from the animal shelter. Besides saving a dog and making room in the local shelter, the need to walk a dog is a good incentive to get up in the morning.
Yoko and I went down to the animal shelter and looked at every dog they had. To say the least, Yoko was not in favor of getting a dog, but relented when I promised I would take care of her. The dog we selected is a 60 pound boxer mix. We named her Moe, based on the selection process we used -- inny, meany, miney....
When we got her a few months ago Moe was 10 months old and 60 lbs of licking and loving affection. And I was right. You can't ignore a 60 poung animal that wants to go out. Every morning Moe comes into the bedroom and licks my feet letting me know it is 6:30 AM and time to go for our daily walk. At first I kind of dreaded getting up at this hour, but it only took one time of ignoring her pleas to go to convince me I can't ignore her any more. I have gotten into the habit of getting up every morning, throwing on some clothes, hooking up my i-pod and taking Moe on a three mile walk. I take her on a shorter walk in the evening when I get home.
I am using the 3 mile walk as training to participate in the Free to Breathe 5 K Run/Walk planned for Punta Gorda on October 31st. Right now it takes me about 40 minutes to walk this distance. I am hoping to develop my regular walk into a run over time. Won't you join me?
Saturday, September 12, 2009
Free to Breathe 5K Event Set for October 31st
In October of 2007 at the age of 52 I was diagnosed with Stage IIIA Non-Large Cell Lung. After my diagnosis I was shocked to learn about the grim prospects facing lung cancer patients and the lack of progress in treating lung cancer over the last 4 decades. More than 160,000 people will die from lung cancer this year and over 200,000 will be newly diagnosed. Only five percent of people with my diagnosis will survive five years or longer from the date of diagnosis. The overall five year survival rate for lung cancer is 15%. There are 70 million people who, like me, finally quit smoking -- many quit decades ago -- and think they are out of the woods. Maybe you are one of them?
Unfortunately, many former smokers and many people who NEVER smoked will be stricken by lung cancer in the years to come. Lung cancer use to be primarily a male disease. Now half of all lung cancer patients are women and twice as many women will die from lung cancer as breast cancer. Many never smoked. Last year breast cancer received over $23,000 per death in federal research dollars -- close to $1 billion in total, while lung cancer's allocation was about $240 million, less than $1500 per death. I promised myself that, if I got well enough, I would dedicate myself to raising awareness and research funding for lung cancer. Thankfully, I am in remission now and I am able to follow thru. But I need your help.
I formed a lung cancer committee here in Charlotte County earlier this year. We've decided to partner with the National Lung Cancer Partnership to bring the first Free to Breathe 5K Walk/Run and Memorial 1 mile walk to Punta Gorda this fall. The event is designed to raise lung cancer awareness in our community and raise funding for desparately needed lung cancer research. Through State Representative Paige Kreegle's office, we have asked Governor Crist to proclaim November lung cancer awareness month. Our event on October 31st at the Charlotte Sports Park will be the kick-off event for Lung Cancer Awareness month in Florida. Our hope is to have 300 - 500 people running or walking at this first event. To succeed, it critical to obtain the support of the local community,including the medical community, the media, the business community and like-minded people who have been devastated by a lung cancer diagnosis in their family.
As part of the event, there will be a one mile Memorial Walk honoring the lives of lung cancer patients that have lost their battle with the disease. If you would like to honor someone you know or a loved one who has died from the disease, contact me at tecappiello@gmail.com. I'll be sure their name is posted on the Memorial Mile Walk.
You can find details about the event and register as an individual or team representing your organization to run or walk, volunteer, donate, or create a fundraising page at www.freetobreathe.org. Anything you can do to help would be greatly appreciated!
Unfortunately, many former smokers and many people who NEVER smoked will be stricken by lung cancer in the years to come. Lung cancer use to be primarily a male disease. Now half of all lung cancer patients are women and twice as many women will die from lung cancer as breast cancer. Many never smoked. Last year breast cancer received over $23,000 per death in federal research dollars -- close to $1 billion in total, while lung cancer's allocation was about $240 million, less than $1500 per death. I promised myself that, if I got well enough, I would dedicate myself to raising awareness and research funding for lung cancer. Thankfully, I am in remission now and I am able to follow thru. But I need your help.
I formed a lung cancer committee here in Charlotte County earlier this year. We've decided to partner with the National Lung Cancer Partnership to bring the first Free to Breathe 5K Walk/Run and Memorial 1 mile walk to Punta Gorda this fall. The event is designed to raise lung cancer awareness in our community and raise funding for desparately needed lung cancer research. Through State Representative Paige Kreegle's office, we have asked Governor Crist to proclaim November lung cancer awareness month. Our event on October 31st at the Charlotte Sports Park will be the kick-off event for Lung Cancer Awareness month in Florida. Our hope is to have 300 - 500 people running or walking at this first event. To succeed, it critical to obtain the support of the local community,including the medical community, the media, the business community and like-minded people who have been devastated by a lung cancer diagnosis in their family.
As part of the event, there will be a one mile Memorial Walk honoring the lives of lung cancer patients that have lost their battle with the disease. If you would like to honor someone you know or a loved one who has died from the disease, contact me at tecappiello@gmail.com. I'll be sure their name is posted on the Memorial Mile Walk.
You can find details about the event and register as an individual or team representing your organization to run or walk, volunteer, donate, or create a fundraising page at www.freetobreathe.org. Anything you can do to help would be greatly appreciated!
Friday, September 4, 2009
Lung Cancer and Healthcare Reform -- Adding My 2 Cents
The debate about heathcare reform is raging on and it has a lot of people concerned about the future direction of the country. I feel I am (or should be) on the frontlines of the debate. First of all, I am a lung cancer patient receiving excellent care from our privately run health system. I wouldn't change that for the world. On the other hand if I lost my job I would be one of the people who would be uninsurable. Secondly, I am Chairman of the Board of St Vincent de Paul Community Healthcare, a not-for-profit clinic and pharmacy here in Charlotte County, which is taking care of the needs of thousand of people in our community who have no healthcare coverage, including patients with cancer. I have a pretty good idea about who the uninsured are. Third, I've lived in a country that has universal healthcare (Japan), so I know what is possible. And lastly, being a stockbroker, I understand how markets work. I feel I understand the issues in the debate-- both pro and con. Would you like to know what I think?
Having the central government command a crucial part of our economy can be likened to my experience in China in the mid-1980's. At the time I was working with the accounting firm Arthur Andersen. We were engaged to help one of the world's largest producers of duck decide whether it was the right time to invest in China. The Chinese did not produce enough duck and wanted my client's technology so they could produce more. After a 10 day trip to understand the environment we did not go forward with the project because the Chinese had a political need to control poultry prices and would not allow us to charge what it cost to produce ducks and receive a premium for the risk we would be taking. The government ran the show in China and could not politically do what was needed to increase pricing to attract producers and create a clearing market. The result was price controls and a continuing shortage of duck. Its the same reason there were bread lines in Russia.
Today we have the equivalent of breadlines in the healthcare industry. We have a dwindling supply of primary care physicians because they are not sufficiently reimbursed from Medicare (i.e. price controls). We have a developing cadre of "consierge" doctors who "don't take" medicare or certain insurance coverages and charge a country-club like entry fee when accepting new patients (i.e. a sort of black market for heathcare.) The supply of heathcare providers is shrinking because of cost controls imposed by government and private insurers. Once everyone has "universal healthcare insurance" and cost becomes irrelevant there will be lines for every kind of healthcare service. That's just the nature of markets. What we need to make our healthcare system work are clearing markets -- and equilibrium between supply and demand.
I am not sure insurance is the answer. When an insurer is paying virtually the entire cost, what incentive is there to keep costs down? We'll spend whatever it takes to keep Mom and Dad alive, even if it is for a few more weeks. That doesn't make much sense really.
I think the answer is staring us straight in the face but no one has proposed it. We should have public facilities, just like we have public schools. We have made education a human right and mandated that every community have public schools. Why couldn't we do the same thing for healthcare? Why couldn't we create public health clinics and dental clinics, out-patient surgery centers, imaging centers and hospitals where you can be treated for free. There is no insurance intermediary. Undoubtedly, since it is free, there would be lines. We would need an army of doctors to do their residency and hone their skills at these public facilities. We could have a system where, after a certain period of low-paying public service, medical student's school loans are forgiven. Doctors could then enter into private practice debt free. Any healthcare worker working at a public facility would be entitled to sovereign immunity and indemnified by the state.
If you don't like the quality of services a public healthcare facility provides, nothing would stop you from purchasing health insurance and going to private facilities and paying a premium for superior service. Under my proposal private hospitals would not be required, as they are today, to care for the uninsured, saving the hosptials millions, resulting in lower insurance costs.
How would all this be paid for? What about using the $900 billion President Obama is saying we can save from the waste in the current system to build healthcare facilities all over the country? (This would be a stimulus on par with building the building of the national interstate road system and a gigantic stimulus to the economy.) We should be able to divert medicare insurance proceeds to building a public healthcare system. We're still going to end up with a shortage of healthcare workers, but I am sure we could create incentives to create the added workforce we will need.
What do you think?
Having the central government command a crucial part of our economy can be likened to my experience in China in the mid-1980's. At the time I was working with the accounting firm Arthur Andersen. We were engaged to help one of the world's largest producers of duck decide whether it was the right time to invest in China. The Chinese did not produce enough duck and wanted my client's technology so they could produce more. After a 10 day trip to understand the environment we did not go forward with the project because the Chinese had a political need to control poultry prices and would not allow us to charge what it cost to produce ducks and receive a premium for the risk we would be taking. The government ran the show in China and could not politically do what was needed to increase pricing to attract producers and create a clearing market. The result was price controls and a continuing shortage of duck. Its the same reason there were bread lines in Russia.
Today we have the equivalent of breadlines in the healthcare industry. We have a dwindling supply of primary care physicians because they are not sufficiently reimbursed from Medicare (i.e. price controls). We have a developing cadre of "consierge" doctors who "don't take" medicare or certain insurance coverages and charge a country-club like entry fee when accepting new patients (i.e. a sort of black market for heathcare.) The supply of heathcare providers is shrinking because of cost controls imposed by government and private insurers. Once everyone has "universal healthcare insurance" and cost becomes irrelevant there will be lines for every kind of healthcare service. That's just the nature of markets. What we need to make our healthcare system work are clearing markets -- and equilibrium between supply and demand.
I am not sure insurance is the answer. When an insurer is paying virtually the entire cost, what incentive is there to keep costs down? We'll spend whatever it takes to keep Mom and Dad alive, even if it is for a few more weeks. That doesn't make much sense really.
I think the answer is staring us straight in the face but no one has proposed it. We should have public facilities, just like we have public schools. We have made education a human right and mandated that every community have public schools. Why couldn't we do the same thing for healthcare? Why couldn't we create public health clinics and dental clinics, out-patient surgery centers, imaging centers and hospitals where you can be treated for free. There is no insurance intermediary. Undoubtedly, since it is free, there would be lines. We would need an army of doctors to do their residency and hone their skills at these public facilities. We could have a system where, after a certain period of low-paying public service, medical student's school loans are forgiven. Doctors could then enter into private practice debt free. Any healthcare worker working at a public facility would be entitled to sovereign immunity and indemnified by the state.
If you don't like the quality of services a public healthcare facility provides, nothing would stop you from purchasing health insurance and going to private facilities and paying a premium for superior service. Under my proposal private hospitals would not be required, as they are today, to care for the uninsured, saving the hosptials millions, resulting in lower insurance costs.
How would all this be paid for? What about using the $900 billion President Obama is saying we can save from the waste in the current system to build healthcare facilities all over the country? (This would be a stimulus on par with building the building of the national interstate road system and a gigantic stimulus to the economy.) We should be able to divert medicare insurance proceeds to building a public healthcare system. We're still going to end up with a shortage of healthcare workers, but I am sure we could create incentives to create the added workforce we will need.
What do you think?
Sunday, August 30, 2009
Lack of Research and Funding for Lung Cancer
Isn't it interesting that I had treatments for nearly one year to deal with the large tumor in my right lung, but there was only "fact based evidence" for the initial treatments I received? After completing chemo-radiation in December of 2007 -- two months after my tumor was discovered -- there was nothing more conventional science could do for me. Dr. Steve liked to say "we are in uncharted waters" when it came to doing anything further. No one knows what modality of treatment has worked for me -- the adjuvant chemo and radiation first line treatment I initially received, the 16 weeks of consolidation chemo of cisplatin and navelbine, the whole brain radiation, or the clinical trial drug I am now taking. No one can predict if I will stay healthy or relapse. When it comes right down to it, there is not much we know about why I have done so well. Maybe it is something in my genes? (If that is the case, I should bottle it and sell it!)
I find that amazing that after decades of "the war on cancer" we are virtually no futher along in treating the number one cancer killer -- lung cancer -- than we were in 1971. Can you imagine if computer technology had not progressed since 1971? There would be no such thing as a personal computer or wireless phones or texting or the internet.
Why are we able to make great strides when it comes to the futuristic technology we employ in our daily lives today (GPS navigation, digital voice recognition, satellite TV, mobile phones, etc) but can't seem to get to first base when it comes to the biology of cancer? Could it be that in our quest for safety and the regulatory environment has created gigantic speed bumps making the cost of new technology prohibitive?
Imagine how slow cell phone technology would have developed if the FDA required that we test the phones to see if prolonged use will result in brain tumors. I dare say we would not have seen cell technology develop at the spectacular speed it did. We would all be walking around with eight pound clunkers. Nor would we have the lung cancer epidemic we have today if the FDA had regulated tobacco companies. How much testing did we do before cigarettes were allowed on the market?
In April of this year I attended a conference put on by the National Lung Cancer Alliance called the National Lung Cancer Advocate Summit in Dallas Texas. The conference was intended for people like me who want to do something about the lack of awareness and funding for lung cancer. Researchers from the University of Texas provided us with a one day course to explain what known about the biology of cancer and what is yet to be learned. Suffice it to say that, while we know a lot about the complexities of the various forms of cancer, there is much more that we don't know.
I find that amazing that after decades of "the war on cancer" we are virtually no futher along in treating the number one cancer killer -- lung cancer -- than we were in 1971. Can you imagine if computer technology had not progressed since 1971? There would be no such thing as a personal computer or wireless phones or texting or the internet.
Why are we able to make great strides when it comes to the futuristic technology we employ in our daily lives today (GPS navigation, digital voice recognition, satellite TV, mobile phones, etc) but can't seem to get to first base when it comes to the biology of cancer? Could it be that in our quest for safety and the regulatory environment has created gigantic speed bumps making the cost of new technology prohibitive?
Imagine how slow cell phone technology would have developed if the FDA required that we test the phones to see if prolonged use will result in brain tumors. I dare say we would not have seen cell technology develop at the spectacular speed it did. We would all be walking around with eight pound clunkers. Nor would we have the lung cancer epidemic we have today if the FDA had regulated tobacco companies. How much testing did we do before cigarettes were allowed on the market?
In April of this year I attended a conference put on by the National Lung Cancer Alliance called the National Lung Cancer Advocate Summit in Dallas Texas. The conference was intended for people like me who want to do something about the lack of awareness and funding for lung cancer. Researchers from the University of Texas provided us with a one day course to explain what known about the biology of cancer and what is yet to be learned. Suffice it to say that, while we know a lot about the complexities of the various forms of cancer, there is much more that we don't know.
Saturday, August 29, 2009
Brain Radiation and Entering a Drug Trial
On our return from our lobbying effort in Washington DC last July, Yoko and I decided to forge ahead with our life together and try to do things we might not have the chance to do later on. We began making travel plans to Europe, something we might never get to do if my health deteriorates. We planned the trip of a lifetime -- three weeks in Italy for early October, 2008.
If I have a recurrence of cancer, it is more likely to show up as metastasis to the brain or bones. In the first phase of my treatment, we were dealing directly with the lung tumor to shrink it and kill any metabolic activity. That seemed to have worked. In the second phase of my treatment we were trying to deal with the cancer systemically -- that is, to kill any cancer cells that could be floating around in my body and showing up as metastatic cancer, say to the liver or kidney. The problem, however, is that chemo does not work so well in the brain. Lung cancer patients will frequently develop secondary brain tumors, despite having been treated with chemo. This tendency for chemo not to help with brain tumors is said to be the result of “the blood-brain barrier”. Given the size of my tumor at diagnosis, I felt I was at risk to develop brain tumors. I am more afraid of being disabled by brain tumors than of dying.
I spoke with Dr Steve as well as my radiology oncologist about the idea of doing whole brain radiation as a preventative. I also did research on the internet and called on online support groups to give me advice. The bottom line was that there is no research to suggest that it helps and there is no research to suggest that it does much long term harm. Nevertheless there are dangers to radiating the brain, such as seizure from brain swelling due to the radiation, potential memory loss, etc. The other risk is that, if down the road I did develop mets to the brain, whole brain radiation as a treatment would be off the table as the brain (or any organ for that matter) can only take so much radiation.
After a lot of handwringing I decided to go ahead with brain radiation. We determined to do 15 treatments -- roughly half the radiation I had in the lung. Given the lack of hard evidence either way, my thinking about this was simple. If I don't do it and I develop brain mets, I will have wished I had. If I develop brain mets anyway, what did I lose? I decided that I would rather go down fighting than regret not having done everything possible.
I also decided to enter into a clinical trial --a double blind study -- for a drug called Stimuvax. This is one of the only drug trials for lung cancer currently underway. If I got into the trial, I had a two-thirds chance of getting the actual drug, rather than a placebo. The problem was that I had to "qualify" for the trial, which required that I be a Stage III non-small cell lung cancer patient who is "stable" and begin the trial within 12 weeks of completing chemo. In order to enter the drug trial within 12 weeks of finishing chemo, I had to start the receiving the drug by the end of August. That meant I had to squeeze two weeks of brain radiation in the last two weeks of July. Our trip to Italy was planned for October.
If I have a recurrence of cancer, it is more likely to show up as metastasis to the brain or bones. In the first phase of my treatment, we were dealing directly with the lung tumor to shrink it and kill any metabolic activity. That seemed to have worked. In the second phase of my treatment we were trying to deal with the cancer systemically -- that is, to kill any cancer cells that could be floating around in my body and showing up as metastatic cancer, say to the liver or kidney. The problem, however, is that chemo does not work so well in the brain. Lung cancer patients will frequently develop secondary brain tumors, despite having been treated with chemo. This tendency for chemo not to help with brain tumors is said to be the result of “the blood-brain barrier”. Given the size of my tumor at diagnosis, I felt I was at risk to develop brain tumors. I am more afraid of being disabled by brain tumors than of dying.
I spoke with Dr Steve as well as my radiology oncologist about the idea of doing whole brain radiation as a preventative. I also did research on the internet and called on online support groups to give me advice. The bottom line was that there is no research to suggest that it helps and there is no research to suggest that it does much long term harm. Nevertheless there are dangers to radiating the brain, such as seizure from brain swelling due to the radiation, potential memory loss, etc. The other risk is that, if down the road I did develop mets to the brain, whole brain radiation as a treatment would be off the table as the brain (or any organ for that matter) can only take so much radiation.
After a lot of handwringing I decided to go ahead with brain radiation. We determined to do 15 treatments -- roughly half the radiation I had in the lung. Given the lack of hard evidence either way, my thinking about this was simple. If I don't do it and I develop brain mets, I will have wished I had. If I develop brain mets anyway, what did I lose? I decided that I would rather go down fighting than regret not having done everything possible.
I also decided to enter into a clinical trial --a double blind study -- for a drug called Stimuvax. This is one of the only drug trials for lung cancer currently underway. If I got into the trial, I had a two-thirds chance of getting the actual drug, rather than a placebo. The problem was that I had to "qualify" for the trial, which required that I be a Stage III non-small cell lung cancer patient who is "stable" and begin the trial within 12 weeks of completing chemo. In order to enter the drug trial within 12 weeks of finishing chemo, I had to start the receiving the drug by the end of August. That meant I had to squeeze two weeks of brain radiation in the last two weeks of July. Our trip to Italy was planned for October.
Fast Forward -- Transition to Realtime
When I began converting my blog into a weekly newspaper column, I was concerned about what my health would be like a year hence. That was in September of 2008. As a result, my articles in the Sun to date have been published on what was, in effect, a one year time delay. I have now published 52 articles in "Living with Cancer".
I would like to continue my story by bringing you up to date. Today begins the second year of my column and because my health is currently excellent I am going to start writing in "real time" rather than on a time delay. I completed my consolidation chemo on May 30, 2008. The following week I flew to California and on June 7th accomplished my first goal after being diagnosed, which was to live long enough to give my oldest daughter away at her wedding. Nearly everyone that Paula and Brian invited came to the wedding, which was held at Shutters on the Beach in Santa Monica. We had 158 guests who celebrated not only the wedding, but my living long enough to be there.
After the wedding we went with some of our good friends to Las Palmas at Rancho Mirage, near Palm Springs. We spent a few days relaxing, playing golf and celebrating life. It was truly a wonderful time that I will never forget.
After the wedding Yoko and I traveled from Florida by auto train to Washington DC to lobby Senators Nelson and Martinez. Our visit was arranged by a lung cancer advocate and patient support group, Lung Cancer Alliance, which had been pushing legislation called "The Lung Cancer Mortality Reduction Act." The proposed legislation directs the National Institute of Health and other federal agencies to make lung cancer research a national research priority. The goal of the legislation is to reduce lung cancer mortality by 50%.
Lung cancer survival rates (defined as living five years from date of diagnosis) is a depressingly low 15% overall. For Stage III and IV l lung cancer patients, survival rates are even worse -- only 5%. Lung cancer survival rates have hardly changed in 40 years. In comparison, breast cancer survival rates are over 89% and prostate cancer survival rates are 99%. In the case of breast, colon, and prostate cancer, there are screening protocols for finding the cancer early. There are no screening protocols for lung cancer. Yoko and I felt that more had to be done.
More people will die of lung cancer (30% of ALL cancer deaths) than breast, prostate, liver, kidney and colon cancers COMBINED. Twice as many women will die from lung cancer than from breast cancer; three times more men will die from lung cancer than prostate cancer, yet lung cancer gets the least amount of funding of all the major cancers -- $1414 per death compared to $23,754 per death from breast cancer, which gets the most funding. It's unbelievable and makes no sense to me whatsoever.
We met with the legislative aides to the Senators, not the Senators themselves. They were sympathetic to our cause and had no idea that there were such large discrepancies in federal funding. But it was clear to me that they would resist legislating “body part specific research.” And politically no one wants to come near my idea of having a portion of the federal excise tax on tobacco (over $8 billion annually) be used for lung cancer research. That would make way too much sense.
I would like to continue my story by bringing you up to date. Today begins the second year of my column and because my health is currently excellent I am going to start writing in "real time" rather than on a time delay. I completed my consolidation chemo on May 30, 2008. The following week I flew to California and on June 7th accomplished my first goal after being diagnosed, which was to live long enough to give my oldest daughter away at her wedding. Nearly everyone that Paula and Brian invited came to the wedding, which was held at Shutters on the Beach in Santa Monica. We had 158 guests who celebrated not only the wedding, but my living long enough to be there.
After the wedding we went with some of our good friends to Las Palmas at Rancho Mirage, near Palm Springs. We spent a few days relaxing, playing golf and celebrating life. It was truly a wonderful time that I will never forget.
After the wedding Yoko and I traveled from Florida by auto train to Washington DC to lobby Senators Nelson and Martinez. Our visit was arranged by a lung cancer advocate and patient support group, Lung Cancer Alliance, which had been pushing legislation called "The Lung Cancer Mortality Reduction Act." The proposed legislation directs the National Institute of Health and other federal agencies to make lung cancer research a national research priority. The goal of the legislation is to reduce lung cancer mortality by 50%.
Lung cancer survival rates (defined as living five years from date of diagnosis) is a depressingly low 15% overall. For Stage III and IV l lung cancer patients, survival rates are even worse -- only 5%. Lung cancer survival rates have hardly changed in 40 years. In comparison, breast cancer survival rates are over 89% and prostate cancer survival rates are 99%. In the case of breast, colon, and prostate cancer, there are screening protocols for finding the cancer early. There are no screening protocols for lung cancer. Yoko and I felt that more had to be done.
More people will die of lung cancer (30% of ALL cancer deaths) than breast, prostate, liver, kidney and colon cancers COMBINED. Twice as many women will die from lung cancer than from breast cancer; three times more men will die from lung cancer than prostate cancer, yet lung cancer gets the least amount of funding of all the major cancers -- $1414 per death compared to $23,754 per death from breast cancer, which gets the most funding. It's unbelievable and makes no sense to me whatsoever.
We met with the legislative aides to the Senators, not the Senators themselves. They were sympathetic to our cause and had no idea that there were such large discrepancies in federal funding. But it was clear to me that they would resist legislating “body part specific research.” And politically no one wants to come near my idea of having a portion of the federal excise tax on tobacco (over $8 billion annually) be used for lung cancer research. That would make way too much sense.
Wednesday, March 11, 2009
Glad to be an American
Yoko became a US citizen today. Next time you speak with her you should congratulate her!The ceremony was very moving. (At least it was for me.) It got me to thinking how lucky we are to be Americans and how, even in these bad times, life in America is better than many of the place these immigrants have come from.
The largest group being sworn in today were from Cuba...72 of the 400 plus people being sworn in as new citizens. (Yoko was the only Japanese.)
Anyway, we have gotten through the process now and if anything happens to me, we won't have to worry about Yoko having limitations on her rights as a surviving spouse.
I am extremely busy and extremely stressed. I am now President of St Vincent de Paul Community Healthcare; Chair for Project Graduation, President of the Lung Cancer Alliance of Florida, and a weekly columnist for the Sun Newspapers. I am headed to NYC next week for some training. Tomorrow I am a featured speaker at a symposium called Confronting Cancer. In April I am attending something called the Lung Cancer Advocacy Summit in Dallas, Texas. Time is just flying by and I have no time to write! The stockmarket has been lousy and when I am working I am not selling much and trying to tamp down the fear of many...not the best job in the world.
I am going to try to put a video below to give you some sense of what the ceremony was like today. It was great (and uplifting) to see the enthusiasm of our newest Americans. Enjoy the video that follows!
Friday, January 30, 2009
Lung Cancer Alliance of Florida, Inc.
I had been working with Lung Cancer Alliance in Washington DC. Unfortunately, my contact there has been very unresponsive with regard to helping me organize a Chapter of LCA here in Florida. I have been calling and writing for months now. She is a young girl who says she will call ...and then doesn't. She sets appointment times and doesn't call. She says she will be sending me material....and doesn't follow thru. Her last message was LCA doesn't have the resources to start something in Florida this year.
I finally said, screw it....and am striking out on my own. Maybe by forming Lung Cancer Alliance of Florida, Inc (the name I chose and now own the rights to) I will get their attention that I am not on their schedule.
Interestingly, LCA is organized -- according to their website -- as a 501(c) 3, which is a charity where donations are tax deductible. But my understanding is that a 501 (c) 3 is prohibited from lobbying or political activity. I will have to look into it, but my understanding is that you can only be a tax deductible non-profit if you refrain from political activities. Clearly LCA does not, but maybe they get around it somehow by how they frame their mission....
I have confirmed our first meeting for Feb 6th. Here is the initial agenda:
Lung Cancer Alliance of Florida, Inc
Organizational Meeting February 6th
Mission Statement
To raise public awareness of lung cancer and to educate the general public about lung cancer;
To promote, both at the state and federal level, funding of lung cancer research, including treatment, early detection and screening ; To provide encouragement and support to lung cancer patients and their caregivers in Florida
Organization
Board of Directors (5 people)
I finally said, screw it....and am striking out on my own. Maybe by forming Lung Cancer Alliance of Florida, Inc (the name I chose and now own the rights to) I will get their attention that I am not on their schedule.
Interestingly, LCA is organized -- according to their website -- as a 501(c) 3, which is a charity where donations are tax deductible. But my understanding is that a 501 (c) 3 is prohibited from lobbying or political activity. I will have to look into it, but my understanding is that you can only be a tax deductible non-profit if you refrain from political activities. Clearly LCA does not, but maybe they get around it somehow by how they frame their mission....
I have confirmed our first meeting for Feb 6th. Here is the initial agenda:
Lung Cancer Alliance of Florida, Inc
Organizational Meeting February 6th
Mission Statement
To raise public awareness of lung cancer and to educate the general public about lung cancer;
To promote, both at the state and federal level, funding of lung cancer research, including treatment, early detection and screening ; To provide encouragement and support to lung cancer patients and their caregivers in Florida
Organization
Board of Directors (5 people)
Officers
Proposed Officers:
Thomas Cappiello – president
Vice President -- Jen Wadsworth
Secretary -- Mary Grace Lorah
Treasurer -- Geof Lorah
Thomas Cappiello – president
Vice President -- Jen Wadsworth
Secretary -- Mary Grace Lorah
Treasurer -- Geof Lorah
Committees:
Public Policy / Strategic Planning Committee
Finance Committee
Events and Promotion Committee
Media and Publicity Committee
Goals:
Raise $50,000 for educational activities
Add 150 members to the LCA-Fl member list
Conduct a "Report Card" survey on the State related to funding lung cancer
Introduce a bill that ties increased tobacco tax to funding lung cancer screening and detection
Introduced legislation to make November "Lung Cancer Awareness" Month in Florida
Organize the State into advocate districts; Create relationship with Moffitt
Create online site for patient and caregiver support
Create a Lung Cancer Alliance of Florida hotline for patient support
Develop a "speakers bureau" to talk with groups about lung cancer
Develop "position papers" on screening protocols, research
Advocate insurance reimbursement for CT scan
Advocate lung cancer patients involvement with clinical trials
Monday, January 26, 2009
Yoko as Citizen Philosopher
I went to Tampa this morning to get Yoko to her final interview with the INS. She had to get up to Tampa by 8:30 AM, which meant we needed to leave at 6:50 AM, which meant we had to be up before 6 AM. We got there on time and everything went well. She passed her interview with a recomendation that her application be accepted. The only thing left now is the swearing-in ceremony, which will happen next month.
We had Bill Flynn, an immigration attorney with Fowler and White, helping us with the process and attend the interview with her. Having an attorney there turns out to have been unnessary, but we took the precaution in case of some unforseen trouble. As her husband, I could not attend the interview and we've dealt enough with the INS to know that they can be difficult.
Yoko was nervous about this interview for months now. She has been studying over the last few months as if she were sitting for the bar exam. She had her civics lessons in hand every free moment and has now discovered that she is actually finding civics and politics interesting. I hope that she will continue to study and deepen her interests.
On January 7th Yoko was awarded a Paul Harris Fellow for her community service work with the Peace River Rotary. It is an honor that Rotary Clubs around the world bestow on people in the community to honor community service. Our club awarded the Paul Harris Fellow to Yoko by making a $1000 contribution in Yoko's name to the Rotary Foundation. She received a metal, pin and certificate to evidence her award. She wore the pin for the first time today, hoping it would garner some merit with the INS and, in effect, say " See? I am a good citizen before I have even become a citizen!" Isn't she cute?
Now Yoko wants to write a book and teach Americans about how to be happy.... She thinks we, as a people, are not happy and don't know how to be happy. She clearly sees some of the issues of our society. She wants to teach us how strong morals and ethics (not "God" per se) can lead to a happy life. This is her next project. I hope she will follow through. She has a lot to teach us.
We had Bill Flynn, an immigration attorney with Fowler and White, helping us with the process and attend the interview with her. Having an attorney there turns out to have been unnessary, but we took the precaution in case of some unforseen trouble. As her husband, I could not attend the interview and we've dealt enough with the INS to know that they can be difficult.
Yoko was nervous about this interview for months now. She has been studying over the last few months as if she were sitting for the bar exam. She had her civics lessons in hand every free moment and has now discovered that she is actually finding civics and politics interesting. I hope that she will continue to study and deepen her interests.
On January 7th Yoko was awarded a Paul Harris Fellow for her community service work with the Peace River Rotary. It is an honor that Rotary Clubs around the world bestow on people in the community to honor community service. Our club awarded the Paul Harris Fellow to Yoko by making a $1000 contribution in Yoko's name to the Rotary Foundation. She received a metal, pin and certificate to evidence her award. She wore the pin for the first time today, hoping it would garner some merit with the INS and, in effect, say " See? I am a good citizen before I have even become a citizen!" Isn't she cute?
Now Yoko wants to write a book and teach Americans about how to be happy.... She thinks we, as a people, are not happy and don't know how to be happy. She clearly sees some of the issues of our society. She wants to teach us how strong morals and ethics (not "God" per se) can lead to a happy life. This is her next project. I hope she will follow through. She has a lot to teach us.
Sunday, January 25, 2009
The Meaning of Life -- Cancer as a Wake-up Call
I read this posting on the LCA website today and this woman captured what I feel as well....that there is more to living life than a daily routine and earning a dollar. I wanted to share this with my girls....here is a woman who has learned a great life lesson.
***
Hello Daily Survivor!
I LOVE your LCA name...we are all afterall survivors, tackling our lives "one day at a time"...and I, for one, intend to add many more days to the 19,375 I have already lived! :)
My treatment was like yours was in 2004...the chemo/radiation sandwich. Since then (03-08) I have also had a craniotomy for a suspected "growing" brain tumor. At time of surgery, the pathologist determined the met was d.e.a.d; it was only necrotic tissue. No tumor. the originaal brain met was killed by one-shot dose of radiation. So, like you, I am Stage IV in diagnosis.
Since my treatment ended last year in March, I have been NED and I am on no medication at all...except my strict self-imposed "food", exercise and supplement regime...and of course, most importantly, my total trust in GOD. There have been so many blessings in my life since my journey with cancer started...no doubt there were many, many more in my 19,000+ days on earth so far, but shamefully I never took the time to acknowledge them or even notice them at all - I was too busy "living" to see that I really wasn't living at all.
Mine was the typical life...up at the crack of dawn, stumble to the coffee pot, dash in my "low fat" creamer (the only 'healthy' portion of my diet in those days), hop in the shower to go through the daily ritual of hair/make-up/wardrobe...emerging over an hour later, grabbing another coffee, out the door, (no time for breakfast) running late as usual (so I am already stressed), as I fight traffic to work (even more stress), stomach grumbling til lunch time (fast food, wolfed down), dealing all day with other peoples problems as usual (stress,stress...and who needs fresh air in the daytime anyway?), fight traffic all the way home in the dark (umhmmm...stress), what to do about dinner that will please everybody? Wait. Do I need to run to the grocery store?? (I should be used to this stress by now, right?) Okay, home. Finally.
Time to start Job#2 - or #3 today. Cook (usually that means canned, boxed or even better yet, microwaved food...did somebody say "nutrients"?), clean, more "issues" to deal with...oh yeah, time for television, off to bed eventually...6 days a week, over and over... Is this living? Is this what God intended for our lives? I think not. I was miserable but was too busy going through the motions to notice. Cancer was my wake-up call. Boy was it ever.I can honestly say that having radically changed my life, cancer in some ways was the BEST thing to ever happen to me.
For the first time in my life, I am able to enjoy my (grown) children, I have completely fallen in love with my husband (and he with me) because we have spent so much REAL time with each other, learning things we never knew about each other before...strengths, weaknesses - conversation has real meaning now, it's not just a bunch of jabbering...my mornings are now spent preparing and eating my organic, fresh foods as I thank and praise God for all the blessings on my table and in my refrigerator. I am able to take my looong walks under God's blue skies, breathing deep the fresh air, feeling the winds in my face (instead of sitting in a cubicle under flourescent lighting all day with a ringing phone reminding me of my "responsibilities" to the dollar).
Would I trade my current medical diagnosis in for the "old" pre-cancer God-less life? Nope. Am I happy? Yes. Ecstatically, probably for the first time in my life. I found God after my original diagnosis, out of desperation because "life" as I knew it fell completely apart and I was spinning. I felt lost and so completely horrified. In the darkness of my fears, I reached out a blind hand and God was there and took it. Yes, even my search for God has been up and down, but He never let go of me, He never let go of my hand; I just couldn't always find it in the dark because my eyes were closed.
If I had a choice I would like to now have another 19,375 days of my new way of life...more time to love the people so important to me, more ways to show them how much they mean to me and how wonderful they are, more time to bring praise to Christ, more days spent in the fresh air under blue skies...but I'm not going to worry about the remaining number of my days, I am too busy loving the relationships God has blessed me with.
Oh yes...no more boxed, canned, microwaved foods...no foods with pesticides, no artificial anything...just 99% Raw, wholesome foods that God provided us with on His earth. Clean fish and beans for protein, tons of phytonutrient rich plant foods, no artificial shampoos, detergents, etc...and I feel FANTASTIC! God, family, God, diet, God, excercise, God = happiness = HEALTH.
God bless you Daily Survivor! You keep fighting the good fight, continue to lean unto Christ and enjoy your days in the sun, fishing pole in hand!
God bless us all ~Ellen
***
Hello Daily Survivor!
I LOVE your LCA name...we are all afterall survivors, tackling our lives "one day at a time"...and I, for one, intend to add many more days to the 19,375 I have already lived! :)
My treatment was like yours was in 2004...the chemo/radiation sandwich. Since then (03-08) I have also had a craniotomy for a suspected "growing" brain tumor. At time of surgery, the pathologist determined the met was d.e.a.d; it was only necrotic tissue. No tumor. the originaal brain met was killed by one-shot dose of radiation. So, like you, I am Stage IV in diagnosis.
Since my treatment ended last year in March, I have been NED and I am on no medication at all...except my strict self-imposed "food", exercise and supplement regime...and of course, most importantly, my total trust in GOD. There have been so many blessings in my life since my journey with cancer started...no doubt there were many, many more in my 19,000+ days on earth so far, but shamefully I never took the time to acknowledge them or even notice them at all - I was too busy "living" to see that I really wasn't living at all.
Mine was the typical life...up at the crack of dawn, stumble to the coffee pot, dash in my "low fat" creamer (the only 'healthy' portion of my diet in those days), hop in the shower to go through the daily ritual of hair/make-up/wardrobe...emerging over an hour later, grabbing another coffee, out the door, (no time for breakfast) running late as usual (so I am already stressed), as I fight traffic to work (even more stress), stomach grumbling til lunch time (fast food, wolfed down), dealing all day with other peoples problems as usual (stress,stress...and who needs fresh air in the daytime anyway?), fight traffic all the way home in the dark (umhmmm...stress), what to do about dinner that will please everybody? Wait. Do I need to run to the grocery store?? (I should be used to this stress by now, right?) Okay, home. Finally.
Time to start Job#2 - or #3 today. Cook (usually that means canned, boxed or even better yet, microwaved food...did somebody say "nutrients"?), clean, more "issues" to deal with...oh yeah, time for television, off to bed eventually...6 days a week, over and over... Is this living? Is this what God intended for our lives? I think not. I was miserable but was too busy going through the motions to notice. Cancer was my wake-up call. Boy was it ever.I can honestly say that having radically changed my life, cancer in some ways was the BEST thing to ever happen to me.
For the first time in my life, I am able to enjoy my (grown) children, I have completely fallen in love with my husband (and he with me) because we have spent so much REAL time with each other, learning things we never knew about each other before...strengths, weaknesses - conversation has real meaning now, it's not just a bunch of jabbering...my mornings are now spent preparing and eating my organic, fresh foods as I thank and praise God for all the blessings on my table and in my refrigerator. I am able to take my looong walks under God's blue skies, breathing deep the fresh air, feeling the winds in my face (instead of sitting in a cubicle under flourescent lighting all day with a ringing phone reminding me of my "responsibilities" to the dollar).
Would I trade my current medical diagnosis in for the "old" pre-cancer God-less life? Nope. Am I happy? Yes. Ecstatically, probably for the first time in my life. I found God after my original diagnosis, out of desperation because "life" as I knew it fell completely apart and I was spinning. I felt lost and so completely horrified. In the darkness of my fears, I reached out a blind hand and God was there and took it. Yes, even my search for God has been up and down, but He never let go of me, He never let go of my hand; I just couldn't always find it in the dark because my eyes were closed.
If I had a choice I would like to now have another 19,375 days of my new way of life...more time to love the people so important to me, more ways to show them how much they mean to me and how wonderful they are, more time to bring praise to Christ, more days spent in the fresh air under blue skies...but I'm not going to worry about the remaining number of my days, I am too busy loving the relationships God has blessed me with.
Oh yes...no more boxed, canned, microwaved foods...no foods with pesticides, no artificial anything...just 99% Raw, wholesome foods that God provided us with on His earth. Clean fish and beans for protein, tons of phytonutrient rich plant foods, no artificial shampoos, detergents, etc...and I feel FANTASTIC! God, family, God, diet, God, excercise, God = happiness = HEALTH.
God bless you Daily Survivor! You keep fighting the good fight, continue to lean unto Christ and enjoy your days in the sun, fishing pole in hand!
God bless us all ~Ellen
Making a Small Splash
When I started blogging, I really did not think I was going to live more than a year. I was in a hurry to write and leave some kind of written statement about my life. As my treatment has progressed and as a result of having a robust response, I have had less of a need to write. Ergo, I have become less and less diligent about writing every day.
My column in the Charlotte Sun, which is based on entries in this blog, is being noticed. I had a lady write to me today Her message read as follows:
I have been invited to speak to support groups, Rotary Clubs, and other local organizations. In late November Jeff Collins invited me to join him on the radio to speak about lung cancer and the need for research dollars. Last Wednesday I went before our State Legislative Committee (two State Senators and three representatives) to suggest that, if Florida is going to increase the tobacco tax, that some of those dollars be used for research into the screening and early detection.
Finally, Scott Lunin contacted me to say that he would like me to help Florida Cancer Specialists campaign for lung cancer awareness. Of course I said yes...although at this point I am not sure about what exactly is going to be involved.
I always have a lot going on, but if I am going to continue my Sun Column, I need to keep adding to the blog, so you can expect to see more entries. Its nice to see something coming from the effort I am making. I am hoping we can make an even bigger splash and get something done on the lung cancer reseach side.
My column in the Charlotte Sun, which is based on entries in this blog, is being noticed. I had a lady write to me today Her message read as follows:
Nearly every week someone is calling me or contacting me with regard to the column. A lady from Louisiana called me recently as she is being sent my column each week from a relative in Punta Gorda. She read that I was collecting Miro's artwork and had one to offer me. The week before that I spoke with a woman who was very distraught over the fact that her 35 year old son (never smoked) has been diagnosed with Stage IV Small Cell Lung Cancer. We spoke by phone for over an hour.Hi Tom,
Let me start by saying you are the first section of the paper I read every Sunday morning since you started writing your column. Like you, I have stage IIIA Lung Cancer. For the same reasons you started out with, I have chosen not to share my condition with others because I don't want to lose their business and right now I am
very able to do my job. No one would know I have cancer.
Besides thanking you for sharing your experience with others, I'd like to ask you who your caring Dr. Steve is and where you went for your radiation treatment. I am currently being treated up at Moffitt, and I am scheduled for a PET scan on 2/3 because it appears that my cancer may have traveled to several enlarged lymph nodes. Radiation will be my next course of treatment, and I don't want to travel to Tampa for it. I'd really appreciated you giving me your impressions of your treatment here (I live in Punta Gorda). I have a friend who works as a nurse at Florida Cancer Center and she told me she has seen patients who have had radiation with some serious burn issues.
Thank you again for sharing. I look forward to your response.
Mary
I have been invited to speak to support groups, Rotary Clubs, and other local organizations. In late November Jeff Collins invited me to join him on the radio to speak about lung cancer and the need for research dollars. Last Wednesday I went before our State Legislative Committee (two State Senators and three representatives) to suggest that, if Florida is going to increase the tobacco tax, that some of those dollars be used for research into the screening and early detection.
Finally, Scott Lunin contacted me to say that he would like me to help Florida Cancer Specialists campaign for lung cancer awareness. Of course I said yes...although at this point I am not sure about what exactly is going to be involved.
I always have a lot going on, but if I am going to continue my Sun Column, I need to keep adding to the blog, so you can expect to see more entries. Its nice to see something coming from the effort I am making. I am hoping we can make an even bigger splash and get something done on the lung cancer reseach side.
Saturday, January 24, 2009
Prayer to St Jude
I wanted to put this in the blog. I read the Lung Cancer Alliance website every day and I am almost always brought to tears. There are so many people suffering with lung cancer and they go through so much before their demise. Someone posted this prayer to St Jude. I hope I never need it....but just in case:
Most holy apostle, St. Jude, faithful servant and friend of Jesus, the
church honors and invokes you universally, as the patron of hopeless cases, of
things almost despaired of. Pray for me, I am so helpless and alone. Make use I
implore you, of that particular privilege given to you, to bring visible and
speedy help where help is almost despaired of. Come to my assistance in this
great need that I may receive the consolation and help of heaven in all my
necessities, tribulations and sufferings particularly (here make your request)
and that I may praise God with you and all the elect forever. I promise O
blessed St. Jude to be ever mindful of this great favor.
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