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.

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.

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.

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!