A Letter to Congress

Here is the letter I wrote and sent off to my congressman last weekend. The facts I am using come from The Lung Cancer Alliance fact sheets. You can send my letter (cut and paste) to your congressmen with a cover letter of your own saying "Please support legislation for lung cancer screening and research. Tom is my (relationship (i.e. brother, friend, etc.))."

E-mail other people you know. You can copy and paste the letter into your e-mail and send it on with a note saying: "Tom is my (relationship). Don't wait till its too late. Its time we do something for lung cancer victims. Support legislation for lung cancer screening, research and awareness now. I would like to ask that you demand hearings to learn why lung cancer -- the deadliest cancer -- is the most underfunded cancer in America."

Here is my letter. Let me know if you will help me start a grass roots campaign going to demand more be done NOW.

MY LETTER TO CONGRESS

The Honorable Tim Mahoney
Member of Congress
P.O. Box 71373Washington, D.C.20024
March 22, 2008

Dear Congressman Mahoney:

I am writing to you because you have made the health care crisis in America a top priority of your political agenda. Victims of lung cancer need leadership in Washington. We need your help to enact legislation that will change the national debate on health care. This letter is to request a meeting with you at your earliest convenience to discuss in depth how we can start to re frame the health care debate on Capitol Hill, with emphasis on:

• Preventative Health Care
• Setting clear national priorities and goals for curing the diseases that are most injurious to our society
• Rethinking the mechanisms and systems for delivering quality health care to the uninsured
• Defining the roles that government and private insurance should play in health care
• Providing choice and quality for consumers through transparency and free market competition

By way of background, I am a 52 year old former smoker residing in Punta Gorda, FL who was diagnosed in October 2007 with Stage IIIA Locally Advanced Adenocarcenoma (Non Small Cell Lung Cancer). I was addicted to a 1- 2 pack-a-day cigarette smoking habit for nearly 35 years until I finally quit – using the prescription drug Chantix, now offered by Pfizer.

I tried to quit many times over the course of my lifetime but never succeeded because of the highly addictive nature of nicotine. It was not until I was prescribed Chantix – which blocks the dopamine receptors in the brain from being stimulated by nicotine-- that I was able to quit my smoking habit for good. Finally we have a drug that counteracts nicotine addiction and a cessation strategy that works. If a drug like Chantix had been available 20 or 30 years ago, I might not be writing to you now.

As a long-time tobacco user, I knew I was at risk. I was diligent about having my lungs checked by X-ray regularly for signs of disease. Unfortunately, the chest-x-ray I had in 2005 did not detect any abnormality. By the time I had another X-ray done in 2007 a malignant tumor in my right upper lung posterior had grown to the size of a baseball and invaded the mediastinum and hilar lymph node area. There are no nerve endings in your lungs so early stage lung cancer frequently presents no symptoms. If I did not go for my annual check-up and routine X-ray last October, I might never have known about my lung cancer until the disease had progressed beyond hope.

The primary reason lung cancer is so deadly is because it is detected too late for effective treatment. Both breast and prostate cancer have accepted screening protocols. These cancers can be detected at earlier stages and treated effectively. Today the five-year survival rate for breast cancer is 89 percent; the five-year survival rate for prostate cancer is 99 percent. Even colon cancer has a five-year survival rate of sixty percent. In comparison, fifty percent of lung cancer cases are diagnosed at Stage IIIB and IV; only 5% of these people live for 5 years or more. Most succumb within a few years of diagnosis. In the little time they have left, lung cancer patients are fighting for their lives – not organizing political rallies and fundraisers for a cure. The overall five-year survival rate for lung cancer is 15 percent –hardly any improvement since the 1970’s when it was 13%.

Yet, the facts are:

• Lung cancer is the leading cause of cancer death in the United States. More than 160,000 Americans will die of lung cancer this year. That is a number equal to the total number of troops serving in Iraq or the equivalent of a fully loaded 747 crashing every day of the year. It is a needless loss of life. We need to act now. There is no time to waste on taking action.
• Lung Cancer is the leading cause of cancer death among Caucasians, African Americans, Asian and Hispanic males. There are no racial boundaries. The disease impacts every segment of our society.Lung Cancer accounts for 30% of ALL cancer deaths.
• Lung cancer will kill more people this year than breast cancer, prostate cancer, colon cancer, liver cancer, kidney cancer, and melanoma COMBINED.
• Lung Cancer will kill three times as many men as prostate cancer and twice as many women as breast cancer this year.

When the "War on Cancer" began in 1971, lung cancer was the leading cause of cancer death. It still is. Funding of the NIH was $400 million in 1971 and in 2007 it was $4.78 billion. Despite being the leading cause of cancer death, lung cancer funding has been less than the funding of other cancer research by astonishing amounts. The Lung Cancer Alliance estimates that NIH, DOD and CDC Cancer Research funding for breast cancer is over $23,000 per death per year. Prostate cancer gets over $14,000 in research dollars per death. Colon cancer gets just over $5K per death per year. The amount allocated to lung cancer - which accounts for more deaths than all the above combined -- gets only $1,878 per death per year. Does this make ANY sense to you?

High survivorship rates in breast and prostate cancer has translated into political pull in getting research dollars devoted to these causes. The unfortunate fact is that lung cancer victims have no political sympathy or power. Moreover, there is an unspoken stigma attached to the disease: you brought it on yourself so suffer the consequences. In many respects the stigma is reminiscent of HIV/AIDS in the 1980s – which was seen as a disease that afflicted its victims because of lifestyle choices.

The sad fact is that, – for decades now -- lung cancer has lost its place on the political agenda in Washington. The largest advocacy group speaking specifically for lung cancer victims is the Lung Cancer Alliance, which has seven full time staff and a $2.3 million budget. Compared with their political adversaries, they are a tiny organization trying to represent current and future victims of lung cancer. The case for funding lung cancer research and awareness is stunningly clear. Washington needs to act the way it would act in a time of war.

We know who are at risk for getting lung cancer -- smokers and former smokers like myself. There are approximately 70 million of us. Current smokers account for 35 - 40% of lung cancer cases. The rest are former smokers (50%) or people who never smoked (10 - 5%.) The facts show that early stage lung cancer is treatable and has much higher survival rates. People who have lung cancer detected at Stage I and II are often candidates for surgery. Long-term survival for those who can have surgery is significantly improved.

Lung cancer is both preventable and curable if found early. I started smoking as in 1972 and first attempted to quit when I entered college in 1974. I tried many times over the years to quit but never could. If it were not for the development of Chantix, I would likely still be smoking. I just wish we had been able to develop such a drug in the 80’s. At that time political pressure in Washington resulted in billions of dollars being directed toward HIV/AIDS research and finding a cure. Lung cancer research was taken off the list of priorities and it has never gotten back on. Nicotine users today provide the federal government with over $8 billion a year in excise taxes. Why can’t some of these dollars – being provided by the victims themselves -- be used to for lung cancer research and screening?

We need to get our national priorities straight regarding health care. We have the tools for making a significant impact on reducing the number of smokers and providing for early screening and early detection of lung cancer. What is needed is the research dollars and funding to improve the tools that we know work and are currently at our disposal. A prominent researcher, Dr. Claudia Henschke, Division Chief of Chest Imaging at New York's Cornell Medical Center, is optimistic about the benefits of screening using new low dosage spiral CT scans. She and her co-investigators foresee the possibility of lung cancer survival rates skyrocketing from the current 15% to possibly 70% with so many tumors being found at the treatable stage. Why are we not using these tools right now?

Or at least providing the funding needed to get a national screening program in place as soon as possible? Congress could mandate that the tools we have be used, but then who is going to pay for screening and the treatments when all this new cancer is found?

I am a financial advisor working for a major brokerage firm and I am well insured. Cancer treatment is not going to bankrupt my family as long as I am employed. On the other hand, I don’t like the idea my insurance company can veto whether they would pay for a CT Scan for screening, what drugs my oncologist can use or what specialist I can see or what procedure I should have or how frequently. That choice should be strictly a medical decision that I make in consultation with my doctor. Had I had a low dose CT scan early on, again, I might have had fighting chance. As it is I only have a relatively small chance of living for the next five years.

As long as I have insurance that is reasonable, I’ll be OK, but I think about people in Charlotte County who are unemployed right now or without insurance facing my situation. We -- as a caring people -- need to have a system in place that can help these people too.

I happen to be a Board Member and Treasurer of St Vincent de Paul Community Health Care, Inc., which recently opened a clinic to provide primary health care for the working poor and uninsured in Charlotte County. In the first few weeks since the clinic has opened over 200 patients have been seen. If we get the funding in place, we expect to be providing primary (preventative) care to literally thousands of families in Charlotte County in the coming year. What are we going to do when we find UNINSURED patients with lung cancer or other chronic disease? Where is the money going to come from to treat these patients?

Our SVDP Free Clinic and Pharmacy is an experiment and the idea of two compassionate healthcare providers – Dr David Klein and Dr Mark Asperilla and a retired business executive, Tom Ferrara, who began the free pharmacy seven years ago. They have given me the job now of trying to figure out how fund both the clinic and pharmacy to provide primary care services and from there, how to create a system for taking care of uninsured patients with chronic disease. It is a daunting task that is giving me some insight into the many problems that we face in health care in general.

I would like to enlist your help in getting lung cancer research and awareness back on track as a high health care priority. At the same time, I would like to discuss ideas about how Washington might develop a "Free Community Clinic" model such as our Community Clinic on a national basis for treating the working poor and uninsured.

Frankly, I am against a wholesale government "takeover" of our health care system – which is where I am afraid we are headed. There is no question in my mind that the current system is broken and needs to be fixed. It is time we set national goals and priorities that make sense – funding preventative health care and funding research aimed at finding, treating or curing the most deadly diseases, beginning with lung cancer.

It is time that we develop a model for providing free primary health care to the poor and uninsured. We need to develop a system that provides incentives for doctors, nurses, and others to donate their time and expertise without fear of subsequent lawsuit. On-going funding of Free Clinics should come from both government and the private sector. For example, what about taxing businesses that don’t provide any health care benefits to employees? What about having government bulk purchase pharmaceuticals for distribution through a national network of "free pharmacies" for qualified individuals? Shouldn't we provide incentives to "for-profit" hospitals, imaging centers, laboratories for supporting local free clinics and pharmacies? I believe there is a lot we can do around the concept of having Free Clinics in every community that would give relief to those in need. I think it is a subject worth exploring.

I am ready to meet with you here in Florida or in your office on Capitol Hill whenever would be convenient. I look forward to hearing from you soon to arrange a meeting.

Sincerely,

Thomas E Cappiello
26146 Rampart Blvd
Punta Gorda, FL 33983
Tel: 941-628-4204

Finding "The Groove"

I promised to publish some of the pictures Paula Kennedy took. Here is one I really like...Yoko and myself. Don't we look like we really belong together? I like to say that I had to go half way around the world to find her, pick her out from the millions in the crowded streets of Tokyo, and sell myself to her. Let me tell you.... selling me was a tough close, but it was the best close I ever made! My persistence paid off because everyone that knows her loves her, me most of all.

Last weekend I spent some time writing a letter to my congressman. I published the blog today (look at the next blog) and let me know what you think. I want to start a grass roots campaign to get more research dollars for lung cancer screening, research and awareness. You can help by cutting and pasting my letter into an e-mail you send to people you know, asking them to do the same.

Let me switch gears. I was talking with Len Johnson about golf the other day and how most of golf has nothing to do with your ability and everything to do with your mental approach. We shoot high scores between our ears...golf is an easy game if you are "in the groove." (I am playing golf with Len, Bob Frame an Jim Morello tomorow morning, and I am hoping to kick ass up and down Twin Isles, even though I have't played in two weeks. The key will be if I can get "in the groove".)

I became a teenager during the 60's and one favorite expression of the time was "groovie." Simon and Garfunkel picked up on the fashionable word of the day and put it in a song. I remember how much my mother liked their song and really perked up when singing "Feeling Groovie!" I am not sure I ever really understood what feeling "groovie" was suppose to mean -- and I am not sure there is an agreed definition, but I suppose we could assign the meaning to be "feeling good as a result of being in the groove."

After a diagnosis of cancer, your life feels like it is upside down. Your expectations of tomorrow are suddenly changed. You have a new set of worries and concerns. The biggest concern is about "what happens next." No doctor wants to tell you how the disease might progress or what is likely to happen because they don't know. In short, getting a diagnosis of a terminal disease like lung cancer takes you out of your day to day "groove." All of a sudden your daily life is upset. Nothing seems right and nothing you do feels right. All you REALLY want is to get back in the groove of your daily life. Referring to golf, Len said it best. It is like an olympic bobsled speeding down the track...and all of a sudden when you hit a bump or curve that takes you out -- you either recover or you go flying off the track. The goal in golf, bobsleding and dealing with cancer is maintaining your composure and getting back into the groove that will guide you safely to a happy end.

Here is how I have come to think about my "chances" of beating cancer to get back in the groove. To say you are going to beat lung cancer is like saying you expect tails on the next flip of the coin, even though you flipped the coin 100 times so far and it came up tails only 15 times! In fact, in this example, every flip has a 50 / 50 chance on EACH flip of the coin. There is NO predicting the NEXT flip based on the last 100 flips! (In the parlance of Wall Street -- past performanc is not indicative of future results!) On the other hand.... If you flipped a coin 10,000 times, I would NOT bet that you would get all heads or all tails...I would expect the likely outcome is that I would get 5000 tails and 5000 heads or close to those numbers unless the coin was somehow being affected by outside influences (weight, wind, the flipping technique, etc.)

Each cancer case is a flip of the coin. We don't KNOW what the outcome will be, even though we know we have a 50% chance of heads and a 50% chance of tails. (In my case, I have statistically a 15% chance for cure and a 85% chance for no cure.) The outside influences (youth, good performance status, good reaction to therapy, no mets, good doctor, etc.) increases my chances for a cure....let's say to 50%. Now, if I can get in a "positive mental groove" the outcome will be in my favor. This is like trying to make a put in golf. I can make long puts when I am in the groove and have confidence of making long puts. Same thing here. I am glad to report that I am feeling "groovie."

Now on to the news. I could say "more of the same" but that would not make for much of a report. So here goes...

I'll start backward. I went to have chemo (navelbine only) on Friday and I got the report from the nurse that my white blood cell (WBC) count was only 2 (normal is 4.2 - 10). Last week it was 3.6 and I got the full treatment of cisplatin and navelbine. They don't like to give chemo if your WBC gets below 3, so the nurse had to check with Scott to see what to do. Scott came back to the infusion room and after discussing it with me decided to go ahead with the chemo but to order 3 shots of neupogen starting Saturday. I got the buzz from the decatron this morning (it is now Saturday at 6:30 AM) so here I am as usual working on the blog! I will get my shot at 8AM, come home to eat, and go golfing at 10 AM. I will come home by 2 PM and help Yoko get ready to entertain friends tonight for dinner. (I think we are having stuffed salmon.)

Yesterday, after chemo I went to the clinic to sign checks and then went to pick up a client that we invited to come over for lunch. She is a 78 year old woman whose husband was killed 5 years ago by colon cancer. She is kind of lonely and not feeling too well these days, so I decided to ask her over. Yoko made a very nice lunch of veal and spagetti, apple pie and fruit. Eileen is an RN so after lunch I took her over to the clinic to show her what we are doing. She was impressed and maybe I will be able to recruit her to help us out. We need retired nurses.

I took Eileen home after that and dropped by the office to catch up on some work. Eileen gave me some crutches to donate to SVDP she had purchased for her late husband, so I took these by the clinic on my way home. I had a chance to speak with more volunteers and watch the clinic in action.

Continuing backwards, on Thursday night I was up in Sarasota for a meeting with the Executive Director and Board of our SVDP Community Pharmacy of Sarasota to talk finances. I had to leave the office at 3:30PM for a 4:30PM meeting n Sarasota and I did not get home until 8:30 in the evening. So Thursday was kind of a short work day.

Wednesday I had Rotary in the morning and I was in Sarasota again to record a spot on the local TV station, "Charlotte Today" in the afternoon. I was there representing Peace River Rotary and to talk about the Munholand Fund with Carolyn Freeland. We left the office at 1:30PM and got back to the office by 4:30PM. I was suppose to go to a seminar on Wednesday evening, but we had a very low turnout (only 3 or 4 people) so I let Ryan and the wholesaler do it without me.

Tuesday evening I had a "Project Graduation" meeting at the high school. So far we have raised about $16,000. We still need to find another $2k -$4k to match what we have raised in previous years. I spent most of Tuesday at the office trying to finish business for the month. I had an OK month -- a little better than average, but nothing to write home about. It has been hard for me work on a shortened work week, stay involved in the charities, and still produce at the level I would like. The good news is we have about 6 weeks to go before people start leaving town and April is shaping up to be another good month.

Monday is so long ago, I don't remember what I did. No wait a second...I remember now. Paula went home on Monday on a 6 AM flight. Yoko and I both got up at 3 AM to take her down to the airport. We got to the airport at 4:30 AM....had coffee with her and left her to make her way back to Bakersfield. She had a good time visiting and we were glad to see her, of course. We spent most of our time together talking about the wedding. I told her I REALLY don't want her to worry about it. Everyone is coming and it will be a great time. Hopefully she will relax and have fun. Anyway, Yoko and I got home around 5:30 AM...she went back to work and I went to my home PC. I accessed my office computer from home and got a lot done (cleaned up) before ever making it into the office. We never did get our taxes done. Maybe this weekend?

I spent most of the week doing some training on Alternative Investments and reviewing client accounts and trying to figure out what to advise people in this market. I am remaining cautious as I don't think we know yet how bad the credit crunch / financial crisis will be or what effect it will have on main street's economy. There are mixed signals, but I am electing to err on the side of caution.

Monday evening I got home early and spent the time watching the HBO mini-series "John Adams" which I had on TIVO. I think it is a 4 part series and the last one is this weekend. Yoko and I also watched the movie "The Good Shepard" which was about the founding of the CIA. I found this to be really quite interesting. My college professor, Elenor Hadley, was part of the OSS (Office of Strategic Services forerunner of the CIA) that developed the plans for occupying Japan in 1945... She worked for the government her entire career, but was blacklisted during the McCarthy Era as one of the "communist sympathizers" in the State Department in the 1950's... She had an interesting life and was a great friend and teacher.

What is the plan for next week? Monday and Tuesday I have to get my shots. Tuesday I have to see Dr. Moss about my horseness, which seems to be about the same or a little worse. Otherwise, you could hardly know I am sick at all. The neuropathy seem about the same. I feel numbness in my feet and a little in my fingers. Next Fridiay will be my 8th chemo in consolidation and will mark the half way point. Saturday and Sunday next week is the airshow. If my WBC is low, I probably should not work the gates as I would normally.

Hopefully, I can remain healthy and "in a groove" though April as I have a LOT to do!

The Definition of Hope

Here is another picture of the family (a Christmas gift from my brother and sisters) taken by Paula Kennedy at Christmas in our back yard. Nice huh? Janet Minrich says in her comment on the last blog that she sees Yoko and I in each of the girls; people say June looks most like me -- poor kid. Luckily they have compensating features from their mother that more than offset any flaws they get from me! I really like this picture.

Since I started chemo last year have been reading "Team of Rivals" -- the Pulitzer-prize winning history of the Lincoln Administration by Doris Kearns Goodwin. The book was sent to me by my mother right after my diagnosis of cancer. It is about 750 pages. Each week I take it to chemo. I have only read it during chemo treatments. Most times I fall asleep before I get much read. Today was my 6th treatment in the consolidation phase -- 10 more to go. Altogether (definitive treatment and consolidation) I have had 14 treatments and I am on page 690 -- only 60 or so pages to go. I am averaging only 50 pages per treatment or about 10 pages per hour; this is not exactly speed reading! If you look at the comments from the last blog, I guess I will have to read "The Secret" next, since everyone else seems to have read it!

There was something I was reading in the Lincoln history today that struck me and I wanted to share it with you because I thought it was profound. Lincoln was known for being vexed by "melancholy" (what is today called "depression"). Against the council of his advisers, Lincoln decided to visit General Grant and the front lines at City Point in the Spring of 1864...just before the battle of The Wilderness. According to Goodwin, Lincoln timed the visit as a way to maintain a positive attitude and keep his depression at bay. (Apparently visits to the front lifted his mood.) In talking about this, Goodwin quotes Daniel Goldman's study of emotional intelligence, who writes "Having hope means that one will not give in to overwhelming anxiety, a defeatist attitude or depression in the face of difficult challenges or setbacks." Hope is "more than the sunny view that everything will turn out all right"; it is "believing you have the will and the way to accomplish your goals." Lincoln was able to keep a positive attitude during the battle of the Wilderness by doing the thing that made him feel better about the outcome of the war. That is exactly what I am doing in my battle with cancer.

I loved this description of hope. Ten pages earlier in the same book, Goodwin quotes the young daughter of Secretary of State William Seward, Fanny, who on meeting her acting idol, the famed Charlotte Cushman, writes in her diary "I am full of hope that I may yet make my life worth the living and be of some use in the world." She was referring to her plan to become an actress. What struck me was how often (in this book and generally) people define their life and their life's ambition as "being able to do good in the world."

The things I do today that gives me a positive attitude and lifts my spirits are all the charitable activities that keep me busy. While I am well, I have the opportunity to do more -- and I want to take it. We should all do something...and we can all do more. Rotary's motto is "Service Above Self." I think it is a great motto to uphold in your life even if you never step one foot into a church.

When I was first diagnosed with cancer, I was in shock and I had no plan. I was in an emotional state because I did not know what was coming or what to expect. Every step has been an anxious entry into the unknown and I think I could easily have become depressed. I started this blog as therapy and it has worked well for me to write. Six months later, I still don't know how this thing will progress, but as time has gone by I have become less anxious and more hopeful. I have the will and a plan to get better. So far it is working.

Good (scientific) medical advice was the first part of the plan. I am getting good advice and care. Maintaining my lifestyle (not altering my life to accommodate cancer) and doing the things that I like has been the second part of my plan. I continue to play golf and take money from my friends, I am reading and writing, I am pursuing my interest in art, and so far I have missed very few work days. My production at work has not been affected (despite fewer hours) and I have not lost clients (until this week) over this. If I could, I would spend more even time reading and writing and working on charitable projects and even less time in the office.

Third, I am trying to improve my nutrition. I am eating three well balanced meals a day and I have not gone on any crazy diets. Yoko is my nutritionist and I eat what she gives me. (This morning I got shakemusubi (salmon rice ball wrapped in seaweed) for lunch. Everyone at the cancer center wanted to know what I was eating!) You will see below that the only time I had Western food all week was the night I had dinner with the seminar guests at Heron Creek. All the rest of the week I had Chinese, Indian, and Japanese lunches and dinners!

The only thing I have not done is exercise. I lack the time and energy to do it...but it is the one thing I need to tackle. I have a treadmill in the room. I just need to use it everyday. My friend Chris Maher has been walking and exercising since he learned about my diagnosis and has lost 30 or 40 pounds....maybe he can help motivate me. I should start walking with him at 5 AM.

Every week goes by so quickly. I have noticed since my diagnosis that time has accelerated. It seems like only yesterday I started this blog...but we are going on six months! Let me give you a run down of this past week.

Monday was St. Patrick's Day. Nothing special happened, except the stock market was reeling. What sent things south was the collapse of Bear Stearns, the venerable (or should I say vulnerable) investment bank, over the weekend. Jamie Diamon at Chase did a pretty good job of getting Bear for next to nothing... Hopefully John Mack and Morgan Stanley gets the next call from the Fed to rescue someone! By Tuesday the market had rallied...and then gave back three fourths of the gain on Wednesday. Thursday was positive, so all in all the market was a little better than the week began. What a roller coaster! The stress of the market has stressed some of my clients....so I have tried to reach out to many to talk about where I see things going. (I think we are headed for a deeper, broader, and longer recession than anyone on Wall Street or in government is willing to admit right now and I am not optimistic over the next 12 - 24 months.)

When you saw the story about Bear Stearns did you think about what happens to Bear Stearns employees who loose their job and medical benefits and have cancer? They would be covered under COBRA for 18 months; but then they would either have to get coverage under another plan or buy coverage for themselves. The insurance company carrying them would have to offer coverage, but it would not have to be offered cheap -- and no one will want to insure a cancer patient! Not a day goes by these days that I don't think about cancer, medical insurance, and the health care industry in general. If I lost my job or if Morgan Stanley were to go out of business, I would be OK for a while...but then Yoko and I would have a problem -- big time. All I can say is that I better keep my job and Morgan Stanley better remain in business!

Tuesday Paula came home from California. Yoko took off from work to pick Paula up at the airport at 1 PM. I had a seminar that evening in Punta Gorda. (We had 24 couples come and I think I will get at least one or two new clients out of this.) I was exhausted before the seminar even began and came right home afterward to see Paula. We ate Chinese together (gyoza, chahan, and egg-drop) and had a nice talk (mostly about the up-coming wedding, married life, etc.) One thing I learned was that Paula is now teaching her first graders to do something that I insisted all my kids do when they were little -- summarize what they want to tell me in one clear and concise sentence. My theory was that kids would be able to write better if they could speak more clearly. Rather than tell me things in one, long run-on sentence, I asked them to say what they had to say in ONE clear and concise sentence. It was nice to know that this idea for teaching kids how to speak and write better is being passed on to others!

Wednesday morning I had Rotary at 7AM and another seminar that evening at Heron Creek (only 11 people). I had a delicious steak dinner and I am sure we will get one more couple as clients from this seminar as well. My partner (I call him"mini me") Ryan is working hard and doing a good job. His Japanese fiance (Megumi) is now here from Japan. They will be getting married in May. Ryan is my plan B if I get so sick I can not work. He does all the work organizing our marketing efforts and getting out into the community to meet people.

After Wednesday's somewhat grueling schedule, I was too tired to go into work on Thursday. I got up and got dressed, but when I finished breakfast at 9 AM, I decided I was just too tired and could not do it . I called the office and went back to bed. An hour or so later, while I was lying in bed, I got a severe cramp in my foot and calf. I yelled for help and got out of bed and was able to work out the cramps -- Yoko came running to my rescue and massaged my cramping leg. I asked Scott today about why I am cramping and he says the chemo causes a loss of potassium that could result in muscle cramping. I am drinking more liquids and Yoko has now made banana shakes part of the daily menu.

I have also developed some hoarseness. Scott thinks it could be a fungus that grows on the larynx as a result of taking steroids. He has given me an anti-fungal to take for 5 days. If that does not take care of the problem I will go back to see my ENT, Dr. Moss. I am also a little dizzy/ lightheaded from time to time. I am not sure what may be causing dizziness or lightheadedness. I am thinking it could be the medication (lyrica) I am taking; or it could be the cisplatin affecting my inner ear. This is another question to ask Dr. Lunin. My MO these days is to send Dr. Lunin e-mail with questions like this...he normally responds within 12 hours.

Anyway, on Thursday I was so "tired" that I decided to stay home. While I was home in bed cramping, I got a call on my cell phone from a client in Indiana who decided to move his assets (to E-trade of all places!) after I told him about my cancer a few days ago. My reaction? Good riddance. The man has been with me less than a year and is not a good client -- meaning he does not take my advice and just barely meets my minium ($500K). So I am not too upset I guess. He's a time waster -- so be gone! I stayed in bed until 2PM and then got up, re-dressed, and did some work from home by remote.

At 4 PM I had a meeting/ presentation with the three area hospital CEOs. By then I was feeling better and I went from home to the clinic to coordinate on the presentation. After that I returned home and changed into street clothes. Paula and Yoko were down in Ft Myers shopping when I got home at 6PM, so I called down to India Palace and ordered curry and nan for dinner, which they picked up on their way home. After dinner Paula and I went back to the clinic at 8 PM so I could show her around and explain what we are doing. I introduced her to the people that were still there. While we were visiting we had a family walk in at the last minute with no appointment -- all sick with the flu -- five people including two little kids. Our physician's assistant, Joanie, stayed to take care of them; I stayed away from the sick kids! (The last thing I need is to get the flu!)

Today is Good Friday. Paula and I went to Florida Cancer Specialists this morning for my infusion. (She said she wanted to see.) She stayed for an hour and got to meet Dr. Lunin and the nurses and watch them hook me up. Paula observed that Scott is not what she imagined -- he talks fast and and in short and concise sentences -- and he has a sense of humor. She said she could see his mind was going a mile a minute. Anyway, she was happy to have had the chance to meet him. Paula left from the cancer center for Plantation, Florida, where she is meeting-up with friends who are organizing a bachelorette party for her. She'll be home again on Easter. She leaves again for California on Monday.

Yoko and I have no big plans for the weekend. We still have to finish prepping for our tax returns (I HATE that job and I keep putting it off); we have other home office things to do as well. If it is a nice day, maybe we'll go down to Verandah and do some more kayaking or maybe I'll see if someone wants to play golf. Sunday I have normal golf league and it would probably be a good idea to go to church, since it IS Easter. Happy Easter!

People get hope from attending church. I passed the church parking lots today and they were full of cars. There are a lot of people in churches are praying for me. I want them to pray and I should probably go and worship myself. In the meantime, I am working for forgiveness and redemption in my own way.

What gives ME hope is having a plan and not loosing sight of my goals.

PS....I am also reading the bible from cover to cover -- which I have never done -- but at the rate I am going, it may take 10 years....which is fine by me.

Spring Break

I love my daughters Paula, June and Jessica ...can you blame me? Are they not beautiful? I got this and a bunch of the other digital photos taken by Paula Kennedy for my blog...I'll be sharing these one at a time as I make new entries.

Jessie came home from Spring Break last Sunday. She drove the six hours from FSU and made it home in time for dinner. (Yoko made leg of lamb for the occasion.) The week Jessie has been home has just flown by and I did not get a chance to see enough of her. One reason was that she had all four of her wisdom teeth pulled on Tuesday morning -- she was miserable for about one day (and slept all day) but then recovered nicely. The teeth were beginning to crowd her jaw, so it was a good thing to have them taken out.

Jessie seems to be enjoying college life and school. Only five weeks to go before she finishes her freshman year. It seems like she just began. This semester she is taking college algebra, a course on the New Testament, oceanography, and a biology lab. She says she is doing well in all her courses and spends lots of time in the library studying. By Thursday she was up and about visiting with her hometown friends. Friday she came to Florida Cancer Specialists, while I was getting my infusion. She had a chance to meet Dr Lunin and say hello. (Turns out that Scott's dentist is the same person that Jessie went to -- Dr. Patricia Scott.)

Jessie also went with me to SVDP Clinic on Friday to see what we are doing first hand. She got to see me "in action" and apparently came away with the impression that I talk too much and don't listen enough. (No surprise there...if you have not figured it out by now, this blog is the ideal medium for me to express myself. I have a lot I want to say.... What Jessie perhaps did not get is that I don't have a lot of time for people to re-tell me things (for nth time) I already know...so I interrupt to expedite.) Jessie took that to be bad listening skills... I do have bad listening skills and I will have to try harder.... but it is funny...I am taking her to SVDP to learn about the problem we are dealing with and the crisis in health care, and she comes away with an impression of my listening poor skills...hmmm. Not exactly what I had in mind. Oh well.

Jessie's friend from college, Kate Bender, came to visit on Saturday. They were basically gone all day -- first to Smokehouse (a local breakfast eatery) and then to another friend's house to sit by the pool and worship the sun. Not a bad life.

Paula is coming home on Tuesday for a visit during her Spring Break as well. (She has a bachelorette party in Ft Lauderdale next weekend.) She says she wants to see all this too... my getting an infusion, SVDP clinic, etc. I am looking forward to giving her the tour.

I spent all day Saturday working on SVDP clinic funding and writing or speaking with various people about this issue. Saturday night Yoko and I attended the dinner for Dennis Munholand to raise funds for the Munholand Scholarship Fund. I have been in charge of the Munholand Fund effort for my Rotary Club to honor Dennis. We began with the hope of raising $10k in the first year and it appears that, with this dinner, we have far exceeded that goal. I have also been in charge of raising money for Project Graduation, which needs about $20k per year to operate. So between SVDP and Rotary it seems I am constantly looking for money these days.

As far as my health and treatment goes, Scott decided to reduce my dosage of cisplatin and navelbine a little so that I am not too effected by neuropathy, which is the biggest side effect. My fingers and toes are slowly being affected. I can feel it -- a slight tingling sensation and the feeling that you get when a body part falls asleep. I had my doublet infusion on Friday and then worked at SVDP Clinic all day until 9:30 PM, so, as you can see, I am not being too badly affected by the treatments overall.

Today I played golf in my usual Sunday morning league. I shot 85 beating my friend and competitor, Chris Maher, by three strokes and taking $6 from him. (Each week we tend to go back and forth, but there is nothing I like better than taking money from Chris -- even it it is only one dollar!) I had an 8 on one par -4 hole that I should easily have boggied. The way I was playing I might have shot in the high 70's today, were it not for just a few costly mistakes. Oh well. That is what keeps me coming back to play again and again.

I was tired after golf. I came home and took a nap until late afternoon. I am feeling a little tired and I have a horse voice. I am not sure why my voice is horse. It is something else to ask Scott about. After awaking from a pleasant afternoon nap I watched Tiger Woods win at Bay Hill by making a 24 ft downhill slider. What a tough competitor he is. You can see the determination and focus in his eyes as he lines up an important put. My putting was pretty good today, and that makes a big difference in your score. Lately I have noticed that when I THINK I can make a put, I normally do. I made a lot of 10 foot puts today to save par by believing I could make them and visualizing it.

I believe I am going to survive this cancer and be the better for it. I can see it happening.

A Simple "Thank You" Will Do

One of my favorite lines and monologues in a movie comes from the 1992 movie "A Few Good Men." Jack Nicholson plays a dedicated Marine Colonel stationed in Guantanamo, Cuba who is dragged into court by a JAG defense lawyer played by Tom Cruise..."I want the truth!" Cruise screams as he questions Nicholson on the stand. "You can't stand the truth!" snaps Nicholson, who then goes into a long monologue about "standing on that wall" and defending the country and taking advantage of the freedom he provides. Nicholsons send his diatribe with "A simple "thank you" will do."

I was at Florida Cancer Center this morning at 9 AM on the nose. The took my blood and then they guided me into the office to see Dr. Lunin. We discussed various things, but the first thing he did was thank me for the thank you letter I sent to him and his staff. They really do a great job and I thought he and they should know it. So I sent a letter of thanks (below). No biggie.

Scott thanked me for the thank you...which was nice. It was funny because a lot of people at FCS have made a point to thank me for thanking them! The office manager came out to say something, the receptionist and check out people said something -- even the nurses who take care of me said something. This thank you thing is contagious! The Japanese are very diligent about saying "Thank You" and "I'm Sorry". When Americans go to Japan, they rave about Japanese "politeness". They should rave about what is "common courtesy." We need to get that back in this country. There was a time when being polite was important.

Anyway, here is the letter I sent to Scott. These people are really dedicated and work really hard and do a very good job. I believe they are saving my life. The least I could do is say thank you. (I wrote this the same night I wrote my marathon blog last Friday.)

_________________________

Dear Dr. Lunin and Staff:

Unfortunately for me, as you know, I was diagnosed with Stage IIIA Locally Advanced Adenocarcenoma in October of 2007 and referred to you at Flordia Cancer Center by my primary physician, Dr. George Nackley.

I just want you and all the staff and nurses and management at Florida Cancer Center to know how fortunate I feel I am to have you as my medical oncologist, your office staff doing my scheduling and billing, and the oncology nurses (I can name them all) treating me. Not only are you all highly professional and thoughtful about my care and treatment, you demonstrate everyday that you truly care about the person being treated. I experience and observe it every time I visit your office -- from the moment I walk through your doors to the moment I leave. I would love to be able to someday emulate your professionalism and efficiency in my own practice at Morgan Stanley.

Having spent hours upon hours in your facility, I have had a great opportunity to watch how people are treated when they are greeted, drained, examined, re-poured, and sent on their way with appointments for next time. It is a thing of beauty to watch "the client experience" and the "tailoring" of treatment at Florida Cancer Center. I think many businesses, including my own, could learn from what you seem to do so naturally and so well. Your quality control is impeccable. I am not sure if it is the systems, the training, the people you hire, the management, or something else. I suspect it is a combination of all the above. Most importantly, your organization exudes a culture of caring. I do see it as very special and something for which you should all take great pride. This is coming from someone who spent a career in Japan, in a society that is acclaimed for being polite and efficient. Let me assure you that the Japanese and their QC methods have nothing on Florida Cancer Center.

I am on the Board of St Vincent de Paul Community Healthcare and we are a part of the Volunteers in Medicine Clinic that have been established all across the country to treat the working poor and uninsured. In our clinic, which was just established, we want to develop a "culture of caring" and provide a quality of care second to none. My recommendation would be that we try to emulate you and the folks at Florida Cancer Center. We would love to have your help and guidance on how to establish systems that ensures we create an environment that provides people we serve with the care and dignity they deserve.

Many of my clients are being treated by you or Dr Browne-Wright or some of the other doctors in your clinic. I make it a point to ask them about their experience and they have all said the same thing to me -- how happy they are to have you treating them. So you should know that this letter probably represents the voice of thousands of patients who may never have written to you, but feel the same way I do.

It is 5 AM and thanks to the steroids you gave me this morning I have not had a wink of sleep. While I was laying awake I was thinking that I would like to do something for you and your staff. The only thing I could think to do is to thank you sincerely and with all my heart. You all do a wonderful job and you should know it.

Yours Very Sincerely,

Patient Number 1600743 (Just kidding!)
Thomas Cappiello
Treasurer
St Vincent de Paul Community Healthcare Inc

PS.. Scott, I would appreciate it if you could put this letter in my medical file and make sure that the staff and nurses have a chance to see it somehow. If you need me to sign a HIPPA waiver so you can post it in the lunch room I'll do it!

WBC Update

I had shots to boost my white blood cell count on Saturday, Monday and Tuesday. Tuesday before the shot they took blood and ran my blood count to see how well the shots worked.

I have to tell you, the drugs they have are miraculous. My WBC was 10.2-- ABOVE normal. In a matter of a few days it had gone from 2.5 to 10 plus. I did get some pain in my bones -- the small of my back and spine in particular -- but nothing much. I am also over my cold. I took an antibiotic for three days last week and with the shots -- wa la -- I am cured. I have to say Dr. Lunin is doing a good job keeping me regulated. I feel like a horse being preped for a race.

Tomorrow I have my 5th chemo treatment in the consolidation round. So far so good. I have 16 treatments in the program -- so 12 to go. I can only pray that things continue as they have.

A New Day for Healthcare Reform

I played in my usual Sunday golf league this morning. Tee time was 7:30 AM, but with the change to daylight savings time, I was up at 5:30AM and out the door by 6AM. This was the first round of golf I have played since getting the port put into my shoulder a month ago. I felt no discomfort and I played a reasonably decent round. I shot 90, only because I got myself into trouble on the last two holes. I should have easily finished with my normal 86...so I guess I am doing OK.

Chris Maher was on a cruise with his wife this week and Kirby was attending PETS (President Elect Training Seminar) for Rotary this weekend. (Kirby will be our new club president this year, replacing Don Kennedy.) I have not seen Doug Bowers lately, but he is normally the 4th player in our group.

Since none of the regulars were around I ended up playing golf this morning with two other guys in my group -- let's call them Bob and Fred. Bob works in the building trades. Fred is a retired insurance salesman. Both are smokers.

I rode with Bob, who was lighting a cigarette on nearly every hole. While we were playing I decided to tell Bob how I had quit smoking last year using Chantix-- only to find out in October that I had lung cancer. (At this point there is no need any longer for me to keep, my cancer secret -- too many people know -- so this was the first opportunity I had to warn a friend who is still smoking.

Of course, Bob was sympathetic in learning about my diagnosis, but then he informed me that he has no health insurance and has not had a physical exam by a doctor since he was 17 years old. He said he had no intent to stop smoking. If he dies, so be it. His reasoning is that he will probably live long. His grandfather lived to 90 and smoked and drank (heavily) his whole life. He doesn't want health insurance, even though he could be covered under his wife's employer's plan. If he needs to be treated for a medical emergency, he will take his chances going to the hospital emergency room.

I asked him if he had life insurance and he said he carried "enough" (which turns out to be only about $75,000). (I have $1.5 million in insurance and I don't think I have "enough" for my wife if I were to die suddenly....so I guess he has very different ideas about "risk management" or what entails "enough.")

I told Bob about my work at St Vincent de Paul Community Healthcare and his response was "I would not qualify; I have a house." Bob drives a fairly new car -- paid for in cash -- and seems to manage his financial life well. They have very few bills. His cars are paid. Both he and his wife work. They have a mortgage payment of less than $700 a month on a house worth maybe $250,000. They owe less than $70,000 on the house. They manage well on what he and his wife make; they live happily within their means.

I said to Bob, what would happen if you were diagnosed with cancer? His answer was that he does not go to the doctor so he would not know if he were sick. He said he hopes he will will just keel over, but he expects to live as long as his grandad. He said he would probably just maximize the credit cards and declare bankruptcy. His house is a protected asset in Florida, so his wife would be OK. (I guess she can eat the shingles when he is gone?)

I thought Bob's whole approach was selfish and irresponsible. He is "leaching" off the rest of us who pay insurance. I am sure there are a lot of Bob's out there. If we want to be compassionate, we have to take care of these people, whether they have insurance or not...but the rest of society pays, which is not fair.

The conversation and my experience with cancer makes me believe that NOBODY can afford to be without health insurance. Unfortunately, there are enough idiots like Bob out there that Clinton's idea (mandatory universal healthcare system) is probably right in principal....everyone MUST participate. You can't just make it "affordable" as Obama says, because idiots like Bob would not buy it, even if it only cost one dollar. If it is not mandatory people will scam the system. So I guess I am now in favor of mandatory healthcare insurance. The question is how to implement a system that would work and provide people with quality and choice.

Life in the Fast Lane

I was going to write a post about what it is like leading your life at 100 MPH but I never got to it. This post will be the substitute. These days I feel like I am living in the fast lane and time is just flying by! To add to this feeling, I had steroids today and I am so hyped up I feel like I could run a marathon! I will tell you about my latest chemo treatment, etc., but this is currently a minor part of how I am spending my time. My oncologist, Dr. Scott Lunin and a few other people have complained that I am not making frequent blog entries lately. I will try to do better.

Actually, I just purchased a book called Surviving Cancer; it is a 100 page book by a woman who was a court stenographer and RV enthusiast diagnosed with small cell lung cancer (which is a more aggressive form of lung cancer than what I have). She was diagnosed in 1999 and had mets in the liver but survived. As I read this book, I was thinking that my blog was MUCH better and MUCH more entertaining. Whether I survive long term or not, I am thinking I need to edit this blog into a book that can be sold, with the proceed going to lung cancer research and education. What do YOU think? I think I should call it "Fighting Lung Cancer -- A Personal Diary". Unfortunately, I am afraid this could be a best seller on Amazon.

I have not posted to this blog in a week because I have been SO busy. What am I doing? Well, we lost our executive director at St Vincent de Paul Community Healthcare and as Treasurer, some of the burden has fallen to me to lend management help. I spent all day last Friday (after chemo) at the clinic. I spent half the day on Monday at the clinic; I spent a good couple of hours again today at the clinic (again, after chemo) and I expect to spend 15 or more hours a week there in the coming months until we get our house in order and straighten out the management and operations. Now that we have a clinic and multiple locations where we are dispensing drugs, the operations have suddenly become more complex and will require some management and oversight on the part of the board. The first challenge was building and opening the clinic; the ongoing challenge will be funding operations on a continuing basis. On a very low level we need $300k a year to keep the doors open; to operate more meaningfully we are looking at more than twice that amount. In addition to the time at the clinic, I am working to help obtain the funding that is needed. So you see what I mean about having a second non-paid job! I am not complaining. I actually enjoy my clinic job and doing something that has a meaningful impact people's lives. To be honest, I like doing this more than my "real" job" because we are "saving lives" of people who have nothing. In my real job, I am simply trying to preserve the assets and retirement lifestyle of people who have everything and are largely self absorbed. It is definitely not as satisfying.

In addition to SVDP, I have Project Graduation for Rotary which is now meeting weekly. This is not taking a great deal of time yet (a few hours a week) but graduation is not far off and we need to do a lot of things prior to the event, which is May 29th.

Next weekend we have our Rotary Club's 10th Anniversary dinner and I have been assigned the job of finding artwork (worth $500 or more) to give away! If you have something worthwhile at home you would like you can donate, let me know! (No, I am NOT giving away my Miro!)
What else is going on? I am in the Republican Club here and missed the March 3rd evening meeting that was featuring Bruce Lockes, the county administrator. I had a last minute evening client appointment I could not change. I am going to try and get in front of Republicans to raise money for St Vincent de Paul Community Health Care. I am also working on speaking engagements or luncheons with church groups, business owners, and other donors.

I really like doing this and if I did not have my "real job" I might enjoy working for the clinic full time. There is plenty to do. I kind of feel like Salomon Chase, the Secretary of the Treasury under Lincoln who had to raise money for the Union Army during the Civil War. We are fighting a war over healthcare in this country and I believe it is the biggest issue facing this country in the coming years. The democrats want to have a government solution, but I believe that government interference in healthcare (Medicare) has caused the current crisis by interfering in market mechanisms. No question healthcare is a unique service and it is a difficult issue, but I think there are other ways to solve the problem. SVDP is an example of what could be done. On the other hand, SVDP could not have treated me for cancer. What would I be facing if I was not insured??I sent in an application this week to attend the Lung Cancer Advocate Summit in Chicago at the end of May. This is being organized by an advocacy group to discuss how to develop grass root support for lung cancer research and awareness. They are limiting attendance (all expenses paid) to 50 people. I am hoping I will be selected to go as I have a lot of ideas about what has to happen to get lung cancer and a movement to screen for early detection on the national radar.

We could save or extend millions of lives if we could catch the disease when it is Stage I or II. Your chances of long-term survival is greatly diminished when you get to stage III and beyond. Had there been a standard test for me, we might have caught my cancer before it developed as much as it did. I am lucky that we caught mine when we did and I feel confident I am going to be in the "survivor" ranks instead of the "victim" ranks. Because I am not disabled by the disease, I feel I am currently in a good position to begin advocating for research dollars and creating awareness among smokers to get tested. Knowing what I know now, as a former smoker, I would have a CT-Scan once a year to look for tumors, even if I had to pay for it myself. Anyone reading this age 50 or older who is a former smoker should talk to their primary care doctor and ask about getting a CT scan to look for tumors. Xray is not good enough. CT-scans would detect something as small as 1 CM.

Last weekend I had a chance to visit my father's brother Sam and his wife Sue at a place they are renting for a few weeks in Cape Canaveral. It was great seeing them. Uncle Sam had a sudden cerebral hemorrhage a few years ago and was nearly totally incapacitated and almost died. Thank God, he pulled through and you would not know today that he was so sick. I loved visiting with Uncle Sam for a couple of reasons. First, he looks and acts a lot like my father, who I miss so much. I never really have had a chance to speak with Uncle Sam at length when I do on the rare occasion see him. There are always too many other people around. Seeing Sam was kind of like visiting with my own father. Secondly, Uncle Sam worked on Wall Street his whole life and he has a lot of interest and insight into what is currently going on in the market. There is always plenty to talk about when it comes to the markets and it is interesting to me to hear his views. And finally, he has interests and does things that (fishing and hunting) that I know nothing about.

I learned that they expanded the place in Java by 13 acres; that Aunt Sue has a shot gun and shoots Canadian geese and other pesky critters at the Java estate; that my two cousins -- Jimmy and Sammy -- are "packing" licensed concealed weapons and have "self protection" stories to tell; that the whole family likes shooting and hunting and that they eat everything they kill. In fact Uncle Sam and his boys went hunting for quail in Texas and bagged 500 birds! They sent them all home and ate them!! (I am listening to this story and thinking they must have been using a machine gun to bag so many birds! I wonder if they went to the same place Dick Cheney frequents?)

We talked about Joan and Jim and their families; Sammy and his new house (which I really want to see when completed as it is being built in a Japanese design); about Suzy and her hubby, etc. We brought them up to date about our kids; our plans to visit Italy in the fall, the wedding, etc. We basically sat around eating and drinking and talking and catching up the entire weekend. I heard all about their health and they heard about mine.

Saturday night we went out to an Italian restaurant (of course!) I found out the name of the town Uncle Sam visited in Italy that my grandfather came from (Melfi -- same name as Dr. Jennifer Melfi the psychiatrist in "The Sopranos"). Apparently, Uncle Sam's snooping around Melfi was not welcomed because the locals thought the rich American was coming back to reclaim abandoned lands they may be living on! They were very suspicious.

Anyway, Yoko and I had a great time and the weekend was over before we knew it. We'll have to get up to Buffalo this summer when it is unbearably hot here!

What else has been going on? Every night is something. Last Friday before going to Cape Canaveral I went to a reception held by the Charlotte Community Foundation. I was suppose to go to the Republican Club dinner on Monday, but I ended up meeting with a client instead. Tuesday I stayed home in bed (for the first time) because I have been trying to shake a cold. I was suppose to help with Project Graduation Tuesday night, but I stayed in home instead. I did absolutely nothing on Tuesday. Wednesday Yoko and I went to our Rotary Club once-a-month evening dinner, which is always fun. Thursday night I worked late, trying to get caught up. This morning I had chemo; I went to work for 2 hours, drop a few tickets and then went to the clinic to perform some "management duties".

Yoko and I got home at about 3 PM together. I made lunch while she put away the groceries. Since then I have been writing e-mails, calling people on various matters, doing this blog, reading and generally keeping very very busy. This weekend we have to get our tax stuff together. (I HATE that job.)

As far as my health condition goes, my white blood cell count is down to 2.5. We began this round of treatment at 8.8 and normal range is 4.2 - 10. Last week the count was 2.9 and the week before that it was 6.1. It really dropped more quickly than the last time, which was more gradual. I asked Scott about this and his response was that the bone marrow exhibits damage as treatment continues. The first round of 8 treatments did not have this kind of dramatic downturn...But the current treatment has shown the WBC count to fall like a rock. An impaired bone marrow is the answer.

Dr Lunin is concerned that if the WBC gets too low, he won't be able to continue the current treatment until I recover. Staying "on schedule" is important to getting good results. SO...he is going to give me neupogen shots starting tomorrow morning at 8 AM. This is suppose to cause the bone marrow to increase production of white blood cells. He is also concerned that my cold has not resolved so he wrote a script for an antibiotic, which I am to take for three days. If I did not have the cold I would feel 100 percent. Even with the cold, I feel 95 percent. I am not tired or suffering any of the ususal side affects of chemo. My red blood cells are at 4.02, which is low, but just below the normal range of 4.5 - 6.4. Last week my RBC was 4.05, so hardly a change. Seems like I do a good job producing RBC. Hgb and HCT are 12.9 and 37.3 respectively, which are below normal (just barely) so my hemoglobin is OK.

I am scheduled for three shots of Neupogen. Tomorrow (Saturday) and then Monday and Tuesday before work. Some people who have had the shots say they made them sick or result in bone pain, so I am a bit apprehensive. Hopefully this new drug, like all the others, will roll off my back and not impact my daily living. I have too much going on to be sick!

Speaking of busy, tonight I made the reservations for our post-wedding trip to Palm Springs. The plan is to go there on June 8th after the wedding. Chris and Karen Maher, Eric and Diane Madsen, and Brian and Lori Brunderman are all planning to go. I made reservations at Rancho Las Palmas in Rancho Mirage, where they hold the Bob Hope Classic Golf Tournament each year. The plan is for the boys to play golf while the girls get treated at the spa on June 9th. We'll all go out to dinner that evening and some will leave the next day and some of us will stay and continue to play. Yoko and I have reserved 4 nights. It should be a lot of fun and relaxing.

We are really looking forward to the wedding and all the activities surrounding it. (By the way, next Saturday is the RSVP deadline, so if you are planning to come, you'd better let Paula know. Once the door closes, that's it. (Just kidding...I think the count is up to 140!)

I have been very fortunate. Now that I am telling people openly about my disease, I can compare notes with other cancer patients. To be honest, in comparison with most people, I feel guilty that I don't have some bad reaction. I keep wondering if I am getting enough dosage! On the other hand, a lot of people I speak with have a "woe is me" attitude and maybe somewhat overstating their adverse reaction. Or maybe it is just more or different drugs. I don't know.

Speaking of dosage, this week there was a story on "American Greed" on CNBC about a pharmacist in Kansas who diluted the chemo drugs he delivered to cancer centers in the Kansas area in order to make more money. An oncologist somehow figured out what he was doing. Can you imagine that??!! I hope the man develops cancer and is treated with saline! He had an $18 million bank account when they arrested him. He was a town notable because he was a big philanthropist....hmmm. I wonder if philanthropy would assuage his guilt for the number of people he probably helped kill early in order to amass the money? It is too mind boggling to even contemplate.

Last health thing to report ...I am developing some neuropathy in my feet and hands. As I type this I can feel a kind of numbness in my fingers and the bottom of my feet. I am taking the Lyrica and I guess that is helping. Nothing else is noticeable. I am now a finely attuned machine looking for anything to report to Scott. It is great you and he take the time to read this blog... It is nice to provide you with a window to my life and thoughts.

One thing I have learned is that when you are faced with the prospect of only living another one or two years, you get busy doing things that are important. The thing that is most important to me now -- other than my family -- is doing something to make the world a better place. I think I spent too much of my youth and early adult life working for myself and trying to make money and get ahead for my family (not all that successfully). It is not that making money is not important... I think money is a great measure of success; but I am not working for money any longer. We are comfortable and I have enough and if something happened to me Yoko will have enough. So now, you begin to think about what else you can do. I am really happy working with SVDP because it is something that is concrete that uses my skills to help people -- albeit indirectly. (I wished I was a doctor so I could volunteer myself to take care of patients.)

I hope my girls and all the young people reading this blog will get involved now in doing something for other people. It is addictive and it is something you will be able to point to years from now and feel very very proud to have done. You end up defining your life by what you do for others, not what you do for yourself. You will have lived a rich life if you have done a lot for other people. These are the people we read about in history. These are the people who really do make a difference. It is not what you know, it is what you DO with what you know that is important.

Sorry to go on an on...it is chemo Friday. Good thing that sex is off limits for 48 hours after chemo. I think they must have made that rule to protect the caregivers! I know. I know. Too much information. Sorry girls!

(By the way, if you decide to make a comment on this blog, don't only comment on the LAST thing I said!)

Oh, and very last thing. Yoko got a card from Janie that made me cry. She was saying thanks for our hosting her visit and she was offering sincere help to Yoko, who is loathe to ask for anything. Janie that was a beautiful note (Yoko let me read it) and I wanted to tell you how much we enjoyed seeing you and how much we love you too!