Monday, December 28, 2009

Feelings of Guilt

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.

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!

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!

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?

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.

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!