Lobbying in Washington DC

Yoko and I went to Washington DC at the end of July. Actually, we were in DC on July 28th and 29th. On the 28th we met with Madeline Otto, who is the legislative assistant to Senator Bill Nelson (Dem-FL). On the 29th we met with Republican Senator Mel Martinez's legislative assistant, Michael Bassett, as well as Kathy Mitchell Deputy Policy Advisor to Representative Tim Mahoney. We were busy while in DC and did not have time to do a lot of touring. We did stroll the Mall after dinner on the 28th and I snapped this rather poor picture.

Here is what I told the legislative aides: Lung cancer killed 160,320 Americans in 2007. That is more than all troops in Iraq. It is like a 747 crashing every day and killing everyone on board. It is four times the number of deaths from breast cancer (40,910) three times the number of deaths from colon cancer (52,180) six times the number of deaths from prostate cancer (27,050) ten times more than liver cancer (16,780) kidney cancer (12,890) and 20 times the number of deaths from melanoma (8,110). In fact, the number of deaths from lung cancer accounts for more than 30% of all cancer deaths. The sad fact is that the National Cancer Institute, the Center for Disease Control and the Department of Defence total budget for cancer research in 2007 was allocated as follows: $971 million for breast cancer; $323 million for prostate cancer; $287 milion for colon cancer and $226 million for lung cancer. That works out to $23,754 per death for breast cancer, and $1,414 per lung cancer death. The NCI' budget is suppose to be a-political, but obviously it is not. Breast cancer (five years or more) survival is now 89%,up from 75% in 1976, prostate cancer survival is 99%, up from 67% in 1976, colon cancer is 64%, up from 50%. But Lung Cancer survival rates are still at 15%, up from 13% in 1976.

People are dying and our government has allowed research priorities to become tainted by politics, rather than making research dollar available where they can do the most good. This is not a matter of "taking dollars away" from breast cancer researchers. It IS a matter of being sure that the 70 million Americans who are current or former smokers get some attention as well.

I asked all three legislative aides to look into supporting The Lung Cancer Mortality Reduction Act, which is a bill (S 3187) introduced by Senators Chuck Hagel and Diane Feinstein. The bill would direct that the NCI, CDC and DOD allocate the dollars necessary to reduce lung cancer mortality by 50% by 2013. The legislation will not be acted upon this session, but we are laying the ground work for the next session of Congress in January.

I explained to the legislative aides that we need a national screening program for lung cancer using low-dose CT scans. Researches estimate that lung cancer mortality could be reduced by 70% if the disease was detected early. X-Ray is not good enough. (I am a case in point.) I explained that lung cancer is deadly because it is generally caught too late (stage III and IV) for effective treatment. Early detection would make a big difference, but there is no agreed standard for screening.

All three legislative aides were naturally sympathetic, but it seemed clear to me that there is no "political points" to be gained from supporting "body part specific" legislation. My point to them was that they can look like leaders (rather than followers) by getting on board with this issue early because lung cancer is going to be an epidemic in this country. At the very least they could call for hearings to have the NCI, et al. explain and defend their budget allocations.

All of these meetings were arranged by a guy named Will Furtado with Lung Cancer Alliance. LCA is the ONLY organization specifically aimed at promoting lung cancer advocacy. It is a small organization with only 7 full time staff and a $2.3 million budget. I promised that I would work with LCA to establish a Florida chapter.

A Visit to Smith Mountain Lake

My sister Jane and her husband David have a place (pictured) at Smith Mountain Lake in southwest Virgina. Jane and David had come to visit us in February and we promised then that we would find time to go visit them in the summer, after I finished my treatments. We kept our word and finally made it to Virginia to see them. The bonus was meeting David's son, Andy and his wife and new born baby girl.

First, though, I have to tell you how long it took to get there. Yoko and I left our home in Florida on Thursday, July 24th at 10 AM. We drove to Stanford, Florida (near Orlando) to take the autotrain to Virginia (rather than driving). The train leaves Florida at 4 PM and is scheduled to arrive just outside of Washington DC at 9 AM the next morning. You have to check in fat least 2 hours before departure (i.e. 2 PM) and it is a three hour trip from our house, Ergo, we left the house at 10 AM to make the train on time.

We arrived in Lorton VA on time, but by the time we got our car, it was already 10:30AM. From there, the drive to Smith Mountain Lake is due west 220 miles. It took Yoko and I about 5.5 hours to make the drive, including a stop to eat and refuel. We got to Jane and David's around 4 PM. So that means it took about 30 hours to get to Janie's place. I told Jane when we arrived, that she could not have picked a place to retire more difficult to get to! We could travel to Beijing in less time! Having said that, this is a beautiful area and just a lovely spot to live, if you can afford it!

Anyway, after arriving, Janie and David wasted no time in showing us the attractions. Friday evening we went for a boat ride to get a feel for the 50 mile long lake followed by dinner. Saturday we were up exploring the lake again. Janie showed us her water skiing skills. (Try as I might, I was never able to get up on the skis. I did manage the jet ski without difficulty!) Andy and family arrived in the afternoon. Jane's next door neighbor hosted a cocktail reception that evening and we had the chance to meet other people from the neighborhood. After another great dinner, we ended the day playing a word game that was a lot of fun. The game is a combination of "Password" and"Time Bomb." You pass a device around that gives you a random word or phrase that you must describe without using the the word or phase itself. Whoever is left holding the device when it goes off is the looser. The best clue of the night was given by Yoko, who said, "looks like Uncle Tim" to which I instantly replied "Paul Newman!"

Sunday morning David, Andy, Pete and I played at David's golf club. It was a hot day and the course was pretty hilly and challenging. I did not play my greatest round, but I enjoyed the course and company.

Given how much time it took us to get there, Yoko and I decided to leave for Washington on Sunday evening, instead of Monday morning as we had originally planned. That turned out to be a good move. We left after dinner and drove for about three hours before arriving at a hotel at 11 PM, in Orange VA, about one and a half hours from DC.

Jane and David were great hosts and we were glad to finally have a chance to see their beautiful Virginia retirement home. I just hope we will be able to visit again...but next time, we'll fly!

Whole Brain Radiation

This is my new Yule Brenner look. But let me explain how this came about.

I finished chemo on May 30th. At that point Scott Lunin told me that there is nothing further to do, other than perhaps WBR (whole brain radiation). (When you do WRB without having any detectable tumors, it is known as PCI -- Prophylactic Cranial Irradiation). The idea is to irradiate the brain before the cancer metastasize to the brain.

My understanding is that the more robust the response lung cancer patients have to chemo and radiation, the more likely it is that the cancer will move to the brain. I think of it like a round-up. We poisoned the body and killed most of the cancer -- to the point where it is not now detectable. The only place of "escape" is the brain, where the blood-brain barrier prevents chemo from working effectively on cancerous cells. PCI will (theoretically) take care of any cancer cells hiding in the brain. At least that is the theory.

Knowing that after consolidation there is no further treatment that we can PROACTIVELY do, I considered whether or not going the next step to PCI was worth the risk. I asked the question to my online Lung Cancer support group. To say the least, the responses were not encouraging. Here is one reply regarding side effects:

Radiation Therapy Side Effects

The side effects of Radiation Therapy can be classified as Acute, Sub acute and Delayed. Acute reactions occur during the course of treatment and are temporary. They are manifested as signs of increased inter-cranial pressure or worsening of neurological deficits. They result from an increase in cerebral edema (abnormal accumulation of fluid). The administration of corticosteroids usually decreases or alleviates symptoms. Steroids are generally administered during the course of therapy to prevent this occurrence. Other acute reactions are nausea, vomiting, anorexia (loss of appetite), fatigue, alopecia (loss of hair) and skin irritation.

Sub acute reactions generally develop one to three months after completion of therapy. These are temporary in nature. Symptoms include anorexia (loss of
appetite), sleepiness, lethargy (drowsiness) and an increase in neurological deficits. These effects result from the temporary disruption of myelin formation, which helps speed the relay of nerve signals. It takes approximately six weeks for myelin to repair.

Delayed reactions usually occur 6-24 months after completion of therapy. These effects are irreversible and often progressive. They result from direct injury to brain tissue and blood vessels. These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels. Symptoms vary from mild to severe decreased intellect, memory impairment, confusion, personality changes and alteration of the normal function of the area irradiated. Leukoencephalopathy (degeneration of the white matter) occurs at the tumor site and surrounding irradiated brain. The clinical manifestations range from mild cognitive neurological impairment to dementia to death.

Those at increased risk for long-term radiation effects are children less than 2 and adults over 50 years of age. Long-term effects can be initially managed to some degree with corticosteroids and surgery to remove necrotic tissue. Other long-term reactions include loss of vision, development of secondary malignancies (oncogenesis) and pituitary-hypothalamic dysfunction (changes in normal hormone levels) leading to problems with your thyroid, sugar metabolism, fertility or ability to process water.

Sources: International Journal of Radiation Oncology
University of Pittsburgh Medical Center

You get the idea. Electing to have PCI was not something you decide lightly. I spoke at length with my doctors, other cancer patients, researched what I could on the internet, etc. At the end of the day, there was no medical studies that said it was PROVEN to be a good idea, but then, there were no studies that said it was NOT! Part of the problem here is that your doctor does not want to give medical advice that is not "evidenced based." The fact of the matter is, while it might make logical sense, it has not been proven and is therefore not typically recommended.

I decided that I would rather be dummied down than dead. What do I have to loose? If I DON'T do it and develop brain cancer, I will kick myself for not having tried. If I never develop brain cancer I will look back on it as having perhaps been a contributor to helping me survive. If I get brain cancer 3 years from now because, who is to say I would not have developed it anyway? The way I looked at it, I have little to loose and everything to gain by giving it a try.

It turned out that, in order to enter the clinical trial, I had to have my last treatment (including chemo and radiation) within a certain window of time, which worked out to be July 18th. If I did not get the PCI done by that date, I would become ineligible for the clinical trial.

I got back from the wedding on June 14th. I began PCI on June 30th. The treatment required that they stretch a mask over you to position you for the machine. As in the chest radiation, there was a certain amount of set-up time required.

Once the set-up was complete I went to 21st Century Oncology every day before work for three weeks, with each session lasting only a few minutes (2 grays per day X 15 days). The 30 grays was half of what I got in radiation to my right lung. I was lucky in that I was able to complete the treatment without the use of steroids. The only side effect was the loss of hair. I was loosing it in patches and decided to simply shave my head. It has not since come back!

I am glad to have done this as I don't believe I am going to suffer any bad side effects. I want to have done everything possible to prevent the cancer from returning. Realistically I know that the cancer can (and probably will) come back. I would like to at least have the satisfaction of putting up a good fight. Now it is on to the vaccinations and clinical trial! Let's roll!

Post-Wedding Trip to Rancho Mirage and La Jolla

I have to say a few words about our post-Wedding trip to Rancho Mirage and La Jolla.

A lot of our good friends made a special effort to come to the wedding, including some of my Rotarian golfing buddies from Florida. Since we were in California, we thought it would be fun to do a little golfing while we were there. Initially we were thinking of traveling around the state to play different courses. Ultimately we decided that it would be smarter to find someplace to go, not too far away, that would be relaxing and where we could unwind from all the Wedding hoopla. Via the Internet I found the Rancho Mirage Los Palmas Resort, which is about 2 hours or so from LA. The summer package offering was $220 per night and included unlimited daily golf and a spa treatment of your choice. It turned out to be the perfect choice. On Sunday, June 8th, we hung around the hotel and said our goodbyes to family and friends. We had the opportunity to have breakfast with my mother and sisters before they left. Later, we met up with Linda and Maurice Oppe to spend some time with them.

Yoko and I checked out of the hotel and left for the airport Hertz Car Rental around 3 PM. We picked up a car (with GPS navigation) and headed toward Palm Springs around 4 PM. We got into Palm Spings by 6:30 PM as planned and were met there by Chris and Karen Maher, Eric and Diane Madsen, and Brian and Lori Brunderman.

On Monday morning (early) the four boys went golfing while the four girls enjoyed a spa treatment. That afternoon we hung out at the pool together and in the evening we had dinner together at the resort. Tuesday morning was a repeat of Monday. Tuesday afternoon after lunch the Brundermans and Maher's left for North California. The Madsen's hung around till later that day. When they left, Yoko and I made dinner plans to eat at a local Japanese restaurant (not very good) and then went to visit a casino (not too exciting)

Wednesday morning Yoko followed me around the golf course taking photos while I golfed. I played in the low 80's that day, much better than when I was playing with my friends! Oh well. The course was beautiful, but what Yoko remembers most about that day wasn't the golf. It was watching the Mexican workers climb the palm trees to trim them. (They use a ladder to go about half way up, and then shimmy the rest of the way to get to the top.) Wednesday afternoon Yoko and I took the tram up the mountain and had lunch at 12,000 feet, with a view of the desert more than two miles below.

I really liked Palm Springs and thought it would be a nice place to live or to be retired, especially since it is pretty likely Paula and June will end up living permanently on the West Coast. We decided to look at some model homes that Wednesday afternoon, but in the end, Yoko was not convinced that it would be a good place for her. Too hot and sunny!

On Thursday we left Palm Springs in the afternoon to make our way down to La Jolla, where we stayed with Mark and Yuko Campbell. What can you say about La Jolla. Nice town...great place to live, but better have a few bucks to live there! (Yoko would love to live in La Jolla., near the Campbells.) Yuko is a great cook and an entertaining personality. We had Indian and green curry the night we arrived. My mouth is watering now thinking about how good it was. On the second night, Yuko made Korean barbque. We toured La Jolla and had a good time visiting. The Campbells are always fun to see.

We left La Jolla for LA that Friday night July 13th, in order to catch an early morning flight. We returned the car directly to Hertz and got a ride to the Radison, where we had stayed the first night in LA. And all of a sudden, the trip we had planned for over a year was over. It could not have gone more smoothly or been better planned. Yoko and I were glad to have had time to spend some quality time with so many of our friends at the wedding and afterward.

The Wedding

I never had time to comment on the wedding of Paula and Brian, which took place on June 7th in Santa Monica. In a nutshell, it was a fantastic celebration that went off without a hitch.

Yoko, Jessie and I left for Los Angeles on Tuesday, June 3rd. We wanted to be there ahead of Yoko's sister, who was planning to arrive on Wednesday, June 4th. We stayed at the airport Radison on the 3rd and then moved to the Santa Monica Lowes the morning of the 4th. Noriko, Ryunosuke and Yurika arrived at the Lowes around noon on the 4th. We hung out at the pool and generally did nothing that first day. I had finished chemo on May 30th and we wanted to be sure that I would not be sick at the wedding. On Thursday the 5th we took Noriko and the kids down to the beach and then walked around the Santa Monica Pier. We made our way to the Third Street Promenade, where we met up with June, Paula and Brian for what turned out to be an impromptu family luncheon at an Italian restaurant, Tresteverde.

The day before the wedding, June 6th, Brian, Mike (Brian's Dad) and I played golf at the Malibu Country Club, which is about 6 miles inland from the Coast Road (Route One) in Malibu. This is a hilly golf course in the Malibu canyons. The course was beautiful, but I played poorly and was roundly beat by my future son-in-law. We had lunch at the course and made it back the hotel in time to take a nap and get ready for the wedding rehearsal.

While I was golfing, Yoko and our entourage, moved from the Santa Monica Lowes to Shutters on the Beach. I learned when I got to the hotel that, in the move, Yoko had neglected to take my cell phone charger. Presumably it was still in the room at the Lowes. This left me with a cell phone half out of juice. The rehearsal was at 5 PM followed by the rehearsal diner at 7:30 at an outdoor Italian restaurant near Venice Beach. The rehearsal started and ended in about 15 minutes. With about 2 hours kill, I decided to go to the Lowes to see if I could recover my charger. That turned out to be wild goose chase. First I went to the front desk, to see if someone had recovered the charger. They sent me to security, in the basement, who had boxes and boxes of cell phone chargers (no two of which were the same!). The security guard then walked me up to the room to check and see if it was still plugged into the wall. (It wasn't.) An hour and a half later, I finally gave up and returned to the hotel for our ride to the rehersal dinner.

The rehearsal dinner took place at the kind of place that offers basic Italian fare (macaroni and meatballs) and lots of Chianti. Everyone had a good time. Paula and Brian had gifts for the bridesmaids and groomsmen as well as to Brian's parents and Yoko and I. They presented the parents with framed caricature drawing of the wedding party. It was a nice memento of the wedding that we have since hung in Jessie's bedroom.

After the rehearsal dinner, we went back to the hotel. Yoko and I had plans to meet John and Kumiko Sunley at 10 PM for drinks in the lobby of the Casa del Mar Hotel, next to Shutters. Yoko and I were there almost an hour before anyone showed. Eventually, my whole family started to trickle in...first Jane and David, my Mom, my brother Frank and his kids, then Linda, and Peggy and Jim Mahan and their two kids, then the Sunleys, then my other nieces and nephews. By the time everyone had gathered there must have been 40 people sitting around drinking. Luckily, everyone was tired and the gathering dissipated relatively early.

To be honest, I don't remember much about the day of the wedding, except that I had a lot of time to kill. My phone had run out of juice and I decided that I would go to Circuit City to get a replacement. I took a cab to the store, bought a charger while the cab waited, and returned to the hotel. Total cost....$83. I told the cab driver on the way back that my daughter was being married in Santa Monica and I felt like a one-man stimulus package!

The rest of the day was spent waiting around for the ceremony to begin. People have asked me if I cried at my daughter's wedding...and I like to joke that no...I cried weeks before when I wrote the check! The reality was that the wedding and the setting was beautiful and I was overcome with emotion walking my daughter down the isle.

We had a strategy to reduce the cost of the open bar. When the ceremony ended, we had 100 Mimosa ready for our 158 guests, so they could immediately have a drink without having to crowd up to the open bar. That worked out well. It was great to see so many of our friends gathered to wish our family well. (In many cases, our friends from Japan had never met our friends from Florida, or our really old friends from PA!)

People moved down to the reception at 7:30PM as scheduled. The reception began at 8 PM. I had two big moments during the reception. The first was my short speech, which I diligently worked on the week before. The second was the selection of the "Father-Daughter Dance Song." I choose "Dance with My Father" by Luther Vandross. I think the speech and my choice of a song were big hits. Selecting the song took months...and keeping my selection a secret turned out to be a good idea, I think.

All in all, it seemed that everyone had a good time (without getting sloppy drunk) and the wedding was a rousing success. It was a year in the planning and over in an instant.

The guests were given a parting gift of M&Ms, inside of which was a message from Paula and Brian that said, "It means so much to have you here today that we wanted to say thank you in a very special way. Though this gift could never repay you what we owe for your time, love and friendship, please take one as you go. In lieu of a traditional favor we have made a contribution in support of our loved ones to The Lung Cancer Alliance. We feel the finest gift is one that helps others live longer and healthier lives." (Yoko reminded me that I neglected to mention this in my original post, but we were truly touched and proud that Paula and Brian would make such a thoughtful gesture.)

For posterity's sake, I'll end this by posting my wedding speech, which was as follows:

Abraham Lincoln once said that the concept of two people living together for 25 years without a serious dispute, suggests a lack of spirit to be admired only in sheep.

Speaking for Yoko and myself, the first thing I want to say… is to Brian. We are so glad you found Paula and that Paula found you. In a marriage, BEING the right person is as important as finding the right person. We know you love Paula deeply and are the right man for her. We know you will try hard each and every day to make her happy. And it won’t be easy. My marital advice to you is never go to bed angry. Stay up and fight.

I also want to thank Margaret, Mike, Patrick and Kristin for making Paula feel like a Mara. We couldn't be happier that you are now her in-laws. We thank you for welcoming her into your family with open arms. Since you are all come from law-enforcement, I know she’ll be safe from crime and can look forward to a good pension.

Paula, I must say you are the most radiant bride I have ever seen. You look beautiful and so happy. I also have some marital advice to you that comes from Oscar Wilde. He said, "A man’s friends likes him and leaves him as he is; but a wife loves him and is always trying to turn him into someone else." You told me Brian is perfect for you…now leave him alone! You’ve done a marvelous job getting ready for this day. Congratulations sweetheart! I love you!

The funny thing about this wedding is virtually no one attending tonight actually lives here. I want to thank all of our other guests for taking time to attend and everything you have done for Brian and Paula. Some of you came from a great distance to be here. Yoko and I know what a sacrifice it was for ALL of you to come and we want to thank you for making such a special effort to be here. We could not be happier to have the chance to spend time with all of you. I hope you will have a good time celebrating this day with us. We love you all.

I’d like you to all now join me in a Japanese toast to the bride and groom. Repeat after me…Kampai!

Getting Re-engaged

I have not blogged since before Paula's wedding so there is a lot to catch up on. Since catching up will be a large undertaking, I've decided to post just the topics I will be covering and adding to each as time goes on.