Small World

We delivered on Project Graduation last night. I am relieved to say that it was as good (if not better) than any other celebration we have done. I don't have a final head-count, but it appears we had about 300 kids, or about 75% of the graduating class in attendance. We must have had 60 or more parents volunteering and working the event. The High School administrators decided that they wanted to hand out the diplommas at the end of the event, but no one told us about it. We had people coming at 5 AM to begin the tear-down, but Chris handled it.

There were (as there always are) a few incidents, including one celebrating graduate who had a seizure. Anyway, it all went off relatively well. We had great leadership and parent group to pull the whole thing off. This year's "theme" was Road Trip -- thus the sign!

My next big event was the end of chemo today! No more infusions or shots...it is now down to getting my blood back to normal, which will take some time. I came down with a cold but Dr Lunin prescribed an antibiotic, which mostly knocked it out. I am going to take it easy this weekend and hope to be fully recovered before I get on a plane Tuesday.

I also had a meeting today with a potential donor who could put SVDP on a solid financial footing. Say a prayer that this donor makes a decision to proceed. I am hoping to hear something next week.

While I was at Project Graduation I learned about two more people with cancer. One was the cousin of a friend of mine. Only 39 years old, discoved at the same time as me. He died last Friday because he gave up from the start and elected not to have treatment for six month. What a crying shame.

Now, you want to hear something funny? I sent out an inquiry using the internet to find a travel agent to help me plan a dream trip to Italy in September. To make a long story short, they sent me three matches. The one I selected is a woman named Mary. Speaking with her tonight, I discovered that the internet dream trip agent I selected will be Mary Cannaly, someone I was in schoolwith from seventh grade until I left for Japan as a senior! I have not seen nor spoken with Mary since I was a High Schoool junior. God works in mysterious ways.

Life Comes at You Fast

I am more emotional tonight than I am normally. Maybe its the drugs. A lot of things have happened in the last two weeks. I have not sorted them all out and there is no particular order...so let me just tell you about events and see if you can make the connections.

I was watching the movie Braveheart, with Mel Gibson tonight. I must have seen it 20 times or more already. In a nutshell, it is about a man named William Wallace, who believes life is not worth living without freedom from tyranny. He inspires his fellow Scots to liberate Scotland from a ruthless English tyrant. In one scene, he speaks to the assembled Scottish warriors, who, being out numbered by the opposing English forces, are about to leave the battlefield and admit defeat, before the fight has even taken place. Wallace rallies them by saying, in so many words, that he would rather fight and lose, than not to fight and die years later in his bed having lived a life without freedom. It is an inspiring scene. What inspires is Wallace's willingness to lead by example.

I went to a client's home today to witness the execution of his last will and testament. My client is bed ridden, dying from cancer. He fought hard, but God wants him too badly. He was diagnosed in September, only a month before me and elected to have surgery to remove most of his esophagus. He was a New York City fireman who worked the pile on September 11th. He is another Osama Bin Laden victim that you won't read about or hear about.... When I saw my friend today, he looked like one of the victims of the Nazi death camps. Bruce and I are the same age. He will be leaving his wife, a grown daughter and son behind. When he became my client five years ago, I sold him a $900,000 term life insurance policy to replace his pension should he die unexpectedly. When he retired he had elected a higher pension amount with no survivor benefits. Turns out, the spouses of firemen who worked the pile on 9.11 ad are now getting sick will get full survivor pension benefits, whether elected or not. The insurance I sold them will be extra for his widow. He expressed his thanks to me and asked me to take care of his family's financial affairs as long as I am able. I have been gratified to be able to help this family. I have to say seeing Bruce really shook me up as I realized that this could be me sometime soon.

I have been reading Andrew Jackson's biography and how he saved New Orleans and the Louisiana Territory from Creek Indians at Horseshoe Bend on the Cumberland River in the early 1800's and later from the British in the War of 1812. At Horseshoe Bend his Tennessee militia were lacking supplies, cold, starving and near mutiny at one point and ready to give up and go home. Jackson was able to rally them. He inspired them with his nationalistic appeals and executed one man (who had not been formally relieved from his post) to make an example of his resolve to maintain discipline. It struck me how easily leaders are willing to take someones life to make a point. We don't give much thought or notice to the victims of such point-making.

I was talking with a friend of mine, whose sister-in-law has given up on fighting her lung cancer. She is not doing well and she has adopted something of a defeatist attitude. How do you inspire someone to fight a terminal disease? How can you motivate them?

I was invited today to write a column in the "Feeling Fit" section of the Charlotte Sun called "Living with Cancer." I am going to speak with the editor next week and see how much space there will be and how frequently she wants a submission. I plan to use the blog for core material. This is a great opportunity for me to increase lung cancer awareness and hopefully inspire people to live a full life.

Last weekend I went to the wedding of my partner, Ryan Rupert, who married a cute Japanese girl named Megumi. After working together for two years now, Ryan is like an adopted son to me. ( I call Ryan "Mini-me", like in the Austin Powers movie.) Yoko and I were honored to sit at the table with the bride and groom their parents. Ryan and I own his house together, where he and his new bride will be living. He will eventually inherit my book of business and buy the house from me. I have every incentive to make sure he succeeds in the business and is in a position to, not only take over for me, when the time comes, but to pay Yoko an income for a number of years based on the book of business I leave behind.


Yoko and I took notes at Ryan's wedding. (For example, they had a water stand at the outdoor ceremony for guests sitting in the hot sun!) My own daughter will be getting married two weeks from today in Santa Monica, California. It is a destination wedding, and everyone is coming! She and Brian signed to build a house together, but I have not yet heard the details. They are going on a cruise honeymoon after the wedding that takes them from Barcelona, Spain to the Greek Isles. Nice huh? I am happy Paula is well launched in her new life and has been adopted so easily and fully into the Mara family. I am suppose to make a two minute speech at the wedding and will be working on this for the next two weeks. (It took me four months to figure out the song I wanted to have played for the father-daughter dance.)

I had my last long-chemo session last Friday. I felt crappy on Saturday, played lousy golf on Sunday, and still felt tired and sick on Monday. I ended up skipping work Monday and sleeping all day.

Tuesday I made it into the office by 10 AM; I had lunch with two local ministers to discuss how to get the local church community to support St Vincent de Paul Community Healthcare. Despite the name, we have virtually no financial support from the Catholic church and and very little support from the church community as a whole, with a few notable exceptions. I am now attempting to reach out to the churches. It is turning into a political battle I never thought I would have to fight. Isn't what we do -- care for the sick and poor among us -- the epitome of Christ's ministry and what God has asked us to do? If every church in the county gave us $100 per month in support, we would have $18k a month from church donations. Instead we have less than $1000 per month. It's an embarrassment I am trying to rectify.

After lunch I went to Florida Cancer Specialists to get a blood test and see if I need any Neupogen shots. I was still OK and no shots were needed! Yeah!

I am co-chair of this year's Project Graduation at Charlotte High. Tuesday night we had the Parent Volunteer Orientation Meeting, since Project Graduation is next Thursday, May 29th. We must have had 50 parents at the orientation meeting, which was gratifying, as well as another 15 working on decorations at another location. We have about 25 Rotarians also helping out. We raised over $22k for this year's celebration, the most we have ever raised in a single year. Not bad in a recession. We are expecting 400 kids for the all night affair. Project Graduation decorating will will start Wednesday afternoon and finish around 10 PM Thursday. Doors open at 11:30PM Thursday night. I will stay till things get going, but I can't do the all-nighter because my final chemo is on Friday morning.

Wednesday was Rotary in the morning, where we discussed the final details for Project Graduation. I came home from work early as I was exhausted and was still feeling a bit under the weather. Despite all the missed days of work and partial days when I was there I still had the second best month production-wise since I joined Morgan Stanley and my third best month ever. Not bad. June is going to be a struggle as I will be out of the office the first two weeks of the month!

I worked a full day on Thursday, but I have developed a cold, which I am trying to shake before the wedding. I went to bed early on Thursday night but did not sleep well because of the cold. Friday morning I was up for chemo which was the second to last session. Next Friday I will have completed all the chemo I am going to do for a while. (Thank God!) I want to see if I can get healthy again...get my blood count back to normal, loose the cold and feeling tired, not be vomiting every weekend and doing unwanted all nighters. (I could not sleep Friday night and ended up at the computer until 6 AM this morning, reading about clinical trials and the next phase of my fight with cancer.)

I think I am decided to go ahead and enroll in a Phase III Clinical Trial for a drug called Stimuvax, that is being developed by Merck and a company called Oncothyreon. You can read about the drug at http://www.oncothyreon.com/index.html If I participate in the trial, there is a one in three chance I will get a placebo and not the actual drug. On the other hand, that is better than not participating and there is nothing else out there currently that would fit my profile as well. I am pretty well decided to give Stimuvax a try. Yoko and I are going to go up to Brooksville after the wedding to speak with the investigator and get a good sense of what risks I have. The Phase II results show that for inoperable Stage III non-large cell lung cancer patients who completed definitive chemo-radiation and had stable disease (i.e. people like me) the average life expectancy was 30.6 months for patients receiving the drug, vs 13 months for people who got the placebo.

The clinical trial will require some time and effort. The trial site is in Brooksville, which is about 1 hour north of Tampa (about 2 1/2 hours from here). Yoko will have to go with me as a back-up driver. We will have to go on a Monday or Tuesday every week for 8 weeks without interpution. We have to have the Pet and CT Scans done first to create a baseline. They will then give me one round of chemo to help make the Stimuvax work better on the immune system. I then get 4 shots -- one in each arm and two in the belly for eight weeks and then "booster shots" once every six weeks after that for an indefinite period -- until there are signs of disease progression. The Stimuvax regiment is "maintenance" or a "preventative" as opposed to curative. The regiment would be stopped if cancer re-appeared. To be in the study I have to start Stimuvax treatment between 4 weeks and 12 weeks of completing my current round of chemo. Yoko and I are planning to go to Virgina and Washington DC in July, so the plan right now would be to begin the clincal trial around July 19th. We are planning a trip to Europe in September and I have to complete all 8 weeks prior to leaving for an extended trip. After seeing those statistics, all I can say is that if I do participate in the trial, let's hope I get the real deal!

I finally fell asleep at 6 AM this morning until around 10 AM. Yoko and I got up because I had a hankering for pancakes. I have been up and down all day napping not fully comfortable. I had ramen for lunch and Yoko made beef stew over egg noodles for dinner. I lost dinner a while ago while typing this blog. I feel much better. Seems like the navelbine alone upsets my stomach more than the cisplatin and navebine combo. Maybe it's because I get more prep-drugs when I get the cisplatin? Who knows. Anyway, one more week of this and I will be done! I will have done very very well to have completed 24 weeks of chemo without any interuptions.

The coming week will be short. Monday is Memorial Day. (We are planning to go kayaking.) Tuesday I work. Wednesday and Thursday is Project Graduation...and Friday is my final day of chemo followed by a big meeting with a large potential donor to St Vincent de Paul, which I hope will go well.

About this time next week, I hope to be on the road to recovery from all the drugs they have pumped into me these past 7 months and in shape both mentally and physically to really enjoy my daughter's wedding day!

Happy Anniversary!

Today is Friday. Chemo day. It is also our Wedding Anniversary. This day marks 27 years since Yoko and I tied the knot. Imagine that! I remember that day like it was yesterday. I will look forward to celebrating our 30th in just three more years.

As usual I have come to Florida Cancer Specialists for my long (5-6 hour) treatment (cisplatin and navelbine) versus the short treatment (navelbine alone), which only takes 2 hours. After my blood test, I met with Dr Lunin briefly for a status check. Here is the upshot:

After today, I have three treatments left -- one long and two shorts. For the first time Scott used the "R" word. He normally does not use the "R" word -- in fact he made a point a few months ago to say that he does not use the "R" word -- so I picked up on his use of the word right away. Looking at my status, I think Scott would tell you that I have tolerated the treatments remarkably well; the response has been been as good as could be expected and my cancer at this point is in "remission," meaning that there is no signs currently of active disease. This is where you would hope to get to at this point in treatment and I am grateful for getting there! Now the only question is how long I can remain "cancer free". Will it be one year? Or two? Or more? Only time will tell. Anyway, Happy Anniversary Yoko!

We talked about staying on schedule for the remaining treatments and the "flu-like" symptoms I get after the neupogen shots. The plan for next week is to wait until Tuesday to do a blood test. If I need the shot on Tuesday, I can get it. If not, we might skip the shots next week. Right now my WBC is good -- in fact on the high side -- so if the WBC does not drop too precipitously, I may be able to go a week without the shots. I can't get the Procrit shots until certain components of my red blood cell count falls below a certain level. I am on the cusp, but not there yet. Apparently, my insurance will not pay for the Procrit shot (which is VERY expensive) until I meet their criteria. (Another example of the insurance company running the show -- not the doctors!)

After I complete the current round, Scott is planning another PET/CAT scan and a brain scan. The plan is to do brain radiation as a preventative, since lesions in the brain are very common with lung cancer patients because of the blood/brain barrier. The hope would be that any cancer cells in the brain that have not been killed by the chemo are destroyed with the radiation. In the meantime, I am looking at what clinical trials are available. In particular, I am looking for preventative/ maintenance type therapies. I have been sending Scott the summary information of some of the trials going on that seemed a fit to me ...here is his response to one going on in Denmark:

To: Thomas Cappiello
Sent: Friday, May 09, 2008 10:21 AM
Subject: Re: NCT00442754,Dendric cells in lungcancer:- Dendritic Cells in Lung Cancer

no...............

a. Patients with inoperable locoregional or advanced NSCLC irrespective of histological subtype where chemotherapeutical treatment options are depleted. (not really you)

b. copenhagen....are you crazy????????? please stick to trials in locations such as hawaii, bahamas, bora bora, etc where your oncologist accompanying you wont have to wear a furry wool hat to stay warm.........

Yoko and I are going to Orlando today to celebrate our anniversary. Tonight we eat dinner at a Japanese restaurant called Mikado's (teppan yaki). Tomorrow morning we have a 9 AM tee time at Hawk's Landing. We'll stay in Orlando for lunch and drive home tomorrow night.

I must say, people are nice and it is very gratifying when they call just to say hello and see how I am doing. Eric Madsen does this regularly. Dennis Kainen called this morning, while I was in chemo, to say hello. He was going to drive up from Miami tomorrow, but I we are not going to be here. We'll try to get together with Tom Witt and Luther Liggett -- maybe in October.

I also got a call from Mark Anthony, a friend from Rotary who was just checking in with me. Brian Brunderman called at 11:30 this morning offering to bring me lunch. (I declined because Yoko prepares a bag lunch on long chemo days). We may get together for lunch next Friday (my last long day). It is nice to know that people care.

A Final Farewell -- Randy Pausch's Story

This story was in the Wall Street Journal today. In case you missed it, I thought I would post it here.

My thoughts when I read this? I am going through the same thing as Randy Pausch. It would be good if no one had to face dying of a terminal disease. On the other hand, we should all live as if we did! Sooner or later we will all face dying, so we should strive to get as much out of life as we can each and every day.
----------------

How Randy Pausch, a 47-year-old college professor, came to teach his family about love, courage -- and saying goodbye


By JEFFREY ZASLOW

May 3, 2008; Page R1

Saying goodbye. It's a part of the human experience that we encounter every day, sometimes nonchalantly, sometimes with great emotion. Then, eventually, the time comes for the final goodbye. When death is near, how do we phrase our words? How do we show our love?

Dr. Randy Pausch, a 47-year-old college professor who's dying of pancreatic cancer, discusses his life since his lecture.

Randy Pausch, a professor at Pittsburgh's Carnegie Mellon University, has become famous for the way in which he chose to say goodbye to his students and colleagues. His final lecture to them, delivered last September, turned into a phenomenon, viewed by millions on the Internet. Dying of pancreatic cancer, he showed a love of life and an approach to death that people have found inspiring. For many of us, his lecture has become a reminder that our own futures are similarly -- if not as drastically -- brief. His fate is ours, sped up.

Since the lecture, I've been privileged to spend a great deal of time with Randy, while co-writing his new book, "The Last Lecture." I've seen how, in some ways, he is peacefully reconciled to his fate, and in other ways, understandably, he is struggling.

The lecture was directed at his "work family," a call to them to go on without him and do great things. But since the talk, Randy has been most focused on his actual family -- his wife, Jai, and their three children, ages 6, 3, and 1.

For months after receiving his terminal diagnosis last August, Randy and Jai (pronounced "Jay") didn't tell the kids he was dying. They were advised to wait until Randy was more symptomatic. "I still look pretty healthy," he told me in December, "and so my kids remain unaware that in my every encounter with them I'm saying goodbye. There's this sense of urgency that I try not to let them pick up on."

Through both his lecture and his life, Randy offers a realistic road map to the final farewell. His approach -- pragmatic, heartfelt, sometimes quirky, often joyous -- can't help but leave you wondering: "How will I say goodbye?"

Maybe 150. That's how many people Randy expected would attend his last lecture. He bet a friend $50 that he'd never fill the 400-seat auditorium. After all, it was a warm September day. He assumed people would have better things to do than listen to a dying computer-science professor in his 40s give his final lesson.

Randy lost his bet. The room was packed. He was thrilled by the turnout, and determined to deliver a talk that offered all he had in him. He arrived onstage to a standing ovation, but motioned to the audience to sit down. "Make me earn it," he said.

He hardly mentioned his cancer. Instead, he took everyone on a rollicking journey through the lessons of his life. He talked about the importance of childhood dreams, and the fortitude needed to overcome setbacks. ("Brick walls are there for a reason. They let us prove how badly we want things.") He encouraged his audience to be patient with others. ("Wait long enough, and people will surprise and impress you.") And, to show the crowd that he wasn't ready to climb into his deathbed, he dropped to the floor and did push-ups.

His colleagues and students sat there, buoyed by his words and startled by how the rush of one man's passion could leave them feeling so introspective and emotionally spent -- all at once saddened and exhilarated.

In 70 minutes onstage, he gave his audience reasons to reconsider their own ambitions, and to find new ways to look at other people's flaws and talents. He celebrated mentors and protégés with an open heart. And through a few simple gestures -- including a birthday cake for his wife -- he showed everyone the depth of his love for his family. In his smiling delivery, he was so full of life that it was almost impossible to reconcile the fact that he was near death -- that this performance was his goodbye.

I'm a columnist for The Wall Street Journal, and a week before Randy gave the lecture, I got a heads-up about it from the Journal's Pittsburgh bureau chief. Because my column focuses on life transitions, she thought Randy might be fodder for a story.

I was aware that professors are often asked to give "last lectures" as an academic exercise, imagining what wisdom they would impart if it was their final chance. In Randy's case, of course, his talk would not be hypothetical.

I first spoke to him by phone the day before his talk, and he was so engaging that I was curious to see what he'd be like onstage. I was slightly ill at ease in our conversation; it's hard to know what to say to a dying man. But Randy found ways to lighten things up. He was driving his car, talking to me on his cellphone. I didn't want him to get in an accident, so I suggested we reconnect when he got to a land line. He laughed. "Hey, if I die in a car crash, what difference would it make?"

I almost didn't go to Pittsburgh to see him. The plane fare from my home in Detroit was a hefty $850, and my editors said that if I wanted, I could just do a phone interview with him after the talk, asking him how it went. In the end, I sensed that I shouldn't miss seeing his lecture in person, and so I drove the 300 miles to Pittsburgh.

Like others in the room that day, I knew I was seeing something extraordinary. I hoped I could put together a compelling story, but I had no expectations beyond that.

Neither did Randy. When the lecture ended, his only plan was to quietly spend whatever time he had left with Jai and the kids. He never imagined the whirlwind that would envelop him.
The lecture had been videotaped -- WSJ.com posted highlights -- and footage began spreading across thousands of Web sites. (The full talk can now be seen at thelastlecture.com.) Randy was soon receiving emails from all over the world.

People wrote about how his lecture had inspired them to spend more time with loved ones, to quit pitying themselves, or even to shake off suicidal urges. Terminally ill people said the lecture had persuaded them to embrace their own goodbyes, and as Randy said, "to keep having fun every day I have left, because there's no other way to play it."

In the weeks after the talk, people translated the lecture into other languages, and posted their versions online. A university in India held a screening of the video. Hundreds of students attended and told their friends how powerful it was; hundreds more demanded a second screening a week later.

In the U.S., Randy reprised part of his talk on "The Oprah Winfrey Show." ABC News would later name him one of its three "Persons of the Year." Thousands of bloggers wrote essays celebrating him.

Randy was overwhelmed and moved by the response. Still, he retained his sense of humor. "There's a limit to how many times you can read how great you are and what an inspiration you are," he said. "But I'm not there yet."

NEW BOOK "The Last Lecture"

Years ago, Jai had suggested that Randy compile his advice into a book for her and the kids. She wanted to call it "The Manual." Now, in the wake of the lecture, others were also telling Randy that he had a book in him.

He resisted at first. Yes, there were things he felt an urge to express. But given his prognosis, he wanted to spend his limited time with his family.

Then he caught a break. Palliative chemotherapy stalled the growth of his tumors. "This will be the first book to ever list the drug Gemcitabine on the acknowledgments page," he joked. But he still didn't want the book to get in the way of his last months with his kids. So he came up with a plan.

Because exercise was crucial to his health, he would ride his bicycle around his neighborhood for an hour each day. This was time he couldn't be with his kids, anyway. He and I agreed that he would wear a cellphone headset on these rides, and we'd talk about everything on his mind -- the lecture, his life, his dreams for his family.

Every day, as soon as his bike ride came to an end, so did our conversation. "Gotta go!" he'd say, and I knew he felt an aching urge (and responsibility) to return to his family life.

But the next day, he'd be back on the bike, enthusiastic about the conversation. He confided in me that since his diagnosis, he had found himself feeling saddest when he was alone, driving his car or riding his bike. So I sensed that he enjoyed my company in his ears as he pedaled.
Randy had a way of framing human experiences in his own distinctive way, mixing humor here, unexpected inspiration there, and wrapping it all in an uncommon optimism. In the three months after the lecture, he went on 53 long bike rides, and the stories he told became not just his book, but also part of his process of saying goodbye.

Right now, Randy's children -- Dylan, Logan and Chloe -- are too young to understand all the things he yearns to share with them. "I want the kids to know what I've always believed in," he told me, "and all the ways in which I've come to love them."

Those who die at older ages, after their children have grown to adulthood, can find comfort in the fact that they've been a presence in their offspring's lives. "When I cry in the shower," Randy said, "I'm not usually thinking, 'I won't get to see the kids do this' or 'I won't get to see them do that.' I'm thinking about the kids not having a father. I'm focused more on what they're going to lose than on what I'm going to lose. Yes, a percentage of my sadness is, 'I won't, I won't, I won't.' But a bigger part of me grieves for them. I keep thinking, 'They won't, they won't, they won't.' "
Early on, he had vowed to do the logistical things necessary to ease his family's path into a life without him. His minister helped him think beyond estate planning and funeral arrangements. "You have life insurance, right?" the minister asked. "Yes, it's all in place," Randy told him.
"Well, you also need emotional insurance," the minister explained. The premiums for that insurance would be paid for with Randy's time, not his money. The minister suggested that Randy spend hours making videotapes of himself with the kids. Years from now, they will be able to see how easily they touched each other and laughed together.

Knowing his kids' memories of him could be fuzzy, Randy has been doing things with them that he hopes they'll find unforgettable. For instance, he and Dylan, 6, went on a minivacation to swim with dolphins. "A kid swims with dolphins, he doesn't easily forget it," Randy said. "We took lots of photos." Randy took Logan, 3, to Disney World to meet his hero, Mickey Mouse. "I'd met him, so I could make the introduction."

Randy also made a point of talking to people who lost parents when they were very young. They told him they found it consoling to learn about how much their mothers and fathers loved them. The more they knew, the more they could still feel that love. To that end, Randy built separate lists of his memories of each child. He also has written down his advice for them, things like: "If I could only give three words of advice, they would be, 'Tell the truth.' If I got three more words, I'd add, 'All the time.' "

The advice he's leaving for Chloe includes this: "When men are romantically interested in you, it's really simple. Just ignore everything they say and only pay attention to what they do." Chloe, not yet 2 years old, may end up having no memory of her father. "But I want her to grow up knowing," Randy said, "that I was the first man ever to fall in love with her."

Saying goodbye to a spouse requires more than just loving words. There are details that must be addressed. Shortly after his terminal diagnosis, Randy and his family moved from Pittsburgh to southeastern Virginia, so that after he dies, Jai and the kids will be closer to her family for support. At first, Jai didn't even want Randy returning to Pittsburgh to give his last lecture; she thought he should be home, unpacking boxes or interacting with the kids. "Call me selfish," Jai told him, "but I want all of you. Any time you'll spend working on this lecture is lost time, because it's time away from the kids and from me."

Jai finally relented when Randy explained how much he yearned to give one last talk. "An injured lion still wants to roar," he told her.

In the months after the talk, while chemo was still keeping his tumors from growing, Randy wouldn't use the word "lucky" to describe his situation. Still, he said, "a part of me does feel fortunate that I didn't get hit by the proverbial bus." Cancer had given him the time to have vital conversations with Jai that wouldn't be possible if his fate were a heart attack or car accident.

What did they talk about? For starters, they both tried to remember that flight attendants offer terrific caregiving advice: "Put on your own oxygen mask before assisting others." "Jai is such a giver that she often forgets to take care of herself," Randy said. "When we become physically or emotionally run down, we can't help anybody else, least of all small children." Randy has reminded Jai that, once he's gone, she should give herself permission to make herself a priority.
Randy and Jai also talked about the fact that she will make mistakes in the years ahead, and she shouldn't attribute them all to the fact that she'll be raising the kids herself. "Mistakes are part of the process of parenting," Randy told her. "If I were able to live, we'd be making those mistakes together."

In some ways, the couple found it helpful to try to live together as if their marriage had decades to go. "We discuss, we get frustrated, we get mad, we make up," Randy said.
At the same time, given Randy's prognosis, Jai has been trying to let little stuff slide. Randy can be messy, with clothes everywhere. "Obviously, I ought to be neater," Randy said. "I owe Jai many apologies. But do we really want to spend our last months together arguing that I haven't hung up my khakis? We do not. So now Jai kicks my clothes in a corner and moves on."
A friend suggested to Jai that she keep a daily journal. She writes in there things that get on her nerves about Randy. He can be cocky, dismissive, a know-it-all. "Randy didn't put his plate in the dishwasher tonight," she wrote one night. "He just left it there on the table and went to his computer." She knew he was preoccupied, heading to the Internet to research medical treatments. Still, the dish bothered her. She wrote about it, felt better, and they didn't need to argue over it.

There are days when Jai tells Randy things, and there's little he can say in response. She has said to him: "I can't imagine rolling over in bed and you're not there." And: "I can't picture myself taking the kids on vacation and you not being with us."

Randy and Jai have gone to a therapist who specializes in counseling couples in which one spouse is terminally ill. That's been helpful. But they've still struggled. They've cried together in bed at 3 a.m., fallen back asleep, woken up at 4 a.m. and cried some more. "We've gotten through in part by focusing on the tasks at hand," Randy said. "We can't fall to pieces. We've got to get some sleep because one of us has to get up in the morning and give the kids breakfast. That person, for the record, is almost always Jai."

For Randy, part of saying goodbye is trying to remain optimistic. After his diagnosis, Randy's doctor gave him advice: "It's important to behave as if you're going to be around awhile." Randy was already way ahead of him: "Doc, I just bought a new convertible and got a vasectomy. What more do you want from me?"

In December, Randy went on a short scuba-diving vacation with three close friends. The men were all aware of the subtext; they were banding together to give Randy a farewell weekend. Still, they successfully avoided any emotional "I love you, man" dialogue related to Randy's cancer. Instead, they reminisced, horsed around and made fun of each other. (Actually, it was mostly the other guys making fun of Randy for the "St. Randy of Pittsburgh" reputation he had gotten since his lecture.) Nothing was off-limits. When Randy put on sunscreen, his friend Steve Seabolt said, "Afraid of skin cancer, Randy? That's like putting good money after bad."
Randy loved that weekend. As he later explained it: "I am maintaining my clear-eyed sense of the inevitable. I'm living like I'm dying. But at the same time, I'm very much living like I'm still living."

Since Randy's lecture began spreading on the Internet, he has heard from thousands of strangers, many offering advice on how they dealt with final goodbyes. A woman who lost her husband to pancreatic cancer said his last speech was to a small audience: her, his children, parents and siblings. He thanked them for their guidance and love, and reminisced about places they had gone together. Another woman, whose husband died of a brain tumor, suggested that Randy talk to Jai about how she'll need to reassure their kids, as they get older, that they will have a normal life. "There will be graduations, marriages, children of their own. When a parent dies at such an early age, some children think that other normal life-cycle events may not happen for them, either."

Randy was moved by comments such as the one he received from a man with serious heart problems. The man wrote to tell Randy about Krishnamurti, a spiritual leader in India who died in 1986. Krishnamurti was once asked what was the most appropriate way to say goodbye to a man who was about to die. He answered: "Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone." In his email to Randy, this man was reassuring: "I know you are not alone."

The chemotherapy keeping Randy alive took a toll on his body. By March, he was fighting off kidney and heart failure, along with debilitating fatigue. Still, he kept a commitment to go to Washington, D.C., to speak before Congress on behalf of the Pancreatic Cancer Action Network.
He spoke forcefully about research needed to fight pancreatic cancer, the deadliest of all the cancers, and then held up a large photo of Jai and the kids. When he pointed to Jai, he told the congressmen: "This is my widow. That's not a grammatical construction you get to use every day.... Pancreatic cancer can be beat, but it will take more courage and funding."

Randy has now stopped chemotherapy, and as he regains his strength, he hopes to begin liver-specific treatments. He is engaged in the process, but expects no miracles. He knows his road is short.

Meanwhile, I feel forever changed by my time with Randy; I saw his love of life from a front-row seat. He and I traded countless emails, and I've filed them all safely in my computer. His daily emails -- smart, funny, wise -- have brightened my inbox. I dread the day I will no longer hear from him.

Randy rarely got emotional in all his hours with me. He was brave, talking about death like a scientist. In fact, until we got to discussing what should be in the book's last chapter, he never choked up. The last chapter, we decided, would be about the last moments of his lecture -- how he felt, what he said. He thought hard about that, and then described for me how his emotions swelled as he took a breath and prepared to deliver his closing lines. It was tough, he said, "because the end of the talk had to be a distillation of how I felt about the end of my life."
In the same way, discussing the end of the book was emotional for him. I could hear his voice cracking as we spoke. Left unsaid was the fact that this part of our journey together was ending. He no longer needed to ride his bike, wearing that headset, while I sat at my computer, tapping away, his voice in my ears. Within weeks, he had no energy to exercise.

Randy is thrilled that so many people are finding his lecture beneficial, and he hopes the book also will be a meaningful legacy for him. Still, all along, he kept reminding me that he was reaching into his heart, offering his life lessons, mostly to address an audience of three. "I'm attempting to put myself in a bottle that will one day wash up on the beach for my children," he said.

And so despite all his goodbyes, he has found solace in the idea that he'll remain a presence. "Kids, more than anything else, need to know their parents love them," he said. "Their parents don't have to be alive for that to happen."

Entering the Next Phase

I have been delinquent posting to the blog because I have been so busy. I had chemo a week ago Friday and was not feeling very well right afterward. I had heartburn on Friday and I got sick to my stomach on Saturday night in the middle of the night.

Yoko told Scott Lunin about it when he called on Sunday to see how I was feeling. Yoko blamed it on the Indian dinner we had Friday night and the Korean bar-b-que we ate on Saturday. Not true. I was feeling queezy right after the navelbine last Friday. It had nothing to do with what I ate. For some reason, the navelbine alone seems to affect me more that the cisplatin/navelbine cocktail I get other weeks.

Last Saturday Jessie came home from college and moved back into our house. It is so nice having her home again! I can't believe she is already finished her first year of college! This whole cancer thing started right after Jessie got up to FSU last fall. The initial shock was such that I was not sure I would even be around for her first year of school or Paula's wedding next month. Luckily, I have responded very well to treatment and I am optimistic that I have more than one or two years ahead of me. Let's hope!

I am now having to have neupogen shots three times a week to build up my white blood cell count so that I can continue treatments on schedule. The shots themselves don't bother me much. They make my bones ache a little and I don't feel quite myself after getting them. This past Friday the nurse said I may need to get Procrit next as my RBC count is getting low. I have sent a note to Scott Lunin about this as I don't want to show up for treatment next Friday and be told by RBC is too low to get my scheduled infusion. I understand that the Procrit shots can be debilitating for a day or two.

I only have four treatments left -- two long ones (Cisplatin and Navelbine, which takes 5 - 6 hours) and two short ones (Navelbine only, which takes about two hours) and I will be done. My last infusion is on May 30th, the day after Project Graduation. The following week we leave for California for Paula's Wedding. I don't want the treatments to go off schedule at this point because it would bump into Paula's wedding. I could get treatment in California the day before the wedding, but who wants that! Anyway, we're going to try to stay on schedule so that I am feeling healthy June 7th!

It is funny how everything is coming together at this point in my life. Next Friday Yoko and I celebrate our 27th year of marriage. I've made reservations at the Orlando World Center Marriott Resort for Friday night. The plan is to go to Orlando Friday after chemo...get up there around 6 PM; I have dinner reservations at 7:30 PM at Mikado's Japanese Steakhouse. Saturday morning at 9 AM we'll play golf at Hawk's Landing and go to lunch. We should be back home Saturday by 5 PM.

I had a "short" chemo treatment this past Friday and went to work for a few hours afterward. Friday afternoon I had an appointment to speak with the financial advisor to a potential large donor to St Vincent de Paul Community Health Care. I am hoping the discussion will lead to action and we get the money within the next month or so. We could use it!

Yesterday Jessie, Yoko and I went down to Ft Myers. Jessie and I played golf at Verandah while Yoko went shopping for stuff we need, including gift cards for Project Graduation! When we got back from golf, Jessie went out with her friends to take pictures of friends going to the high-school prom; Yoko and I went to a charity event -- this one to raise funds for housing for homeless kids. There must have been 500 people at the event, called "An Evening in Oz" orchestrated by the Leadership Charlotte Class of 2007 - 2008. Seemed like we knew at least half the people there -- friends from Rotary, the Charlotte Chamber of Commerce, St Vincent de Paul, people from work, golfing friends, clients, etc. We had a good time. Afterward we went to a wine bar called "Bin 82" which is a new hang-out in Punta Gorda being run by Nick Nemic, one of Paula's friends from high school. There we ran into more friends, including Geof and Mary-Grace Lorah. Mary's 53 year old sister has lung cancer and I spoke with Mary-Grace for a while about her sister. She is not doing as well as I am and has had a hard time with the treatments. At the Oz event I spoke with Matt DePhillips, whose father has Stage III lung cancer as well. Its everywhere.

I played golf this morning with Chris and Kirby as usual; after golf Chris, Kirby and I went to lunch at a friend's "all you can eat Mexican" Sunday brunch. Tonight Yoko and I are going over to Brian and Lori Brunderman's new home for dinner; the Johnsons and Mahers are also going and everyone is bringing something.

I must say, it is satisfying to go to these affairs and see so many people and to know we have so many friends who care about us. I know many of these people will be a huge help to Yoko down the road.

I feel I am at a crossroads entering a new phase of my life and my fight with cancer. I finish chemo on May 30th with no more treatments planned; the following week Paula gets married. In July Yoko take a road trip up to Virginia to see Jane and David's lake house and then onto Washington DC to begin our lobbying effort to fund lung cancer research and early detection. I am thinking of taking Yoko up to Maine in August. In September I am planning to take Yoko to Europe. Tentatively the plan is to travel for two weeks -- first in Italy, and then onto Austria and Germany, in time for Oktoberfest.

With the real estate market in the dumps and construction down signficantly, I have the crazy notion that this would be the ideal time to build a mixed use three-story building on a quarter acre site in downtown Punta Gorda, if I can get the land I have in mind for the right price. I would put a restaurant on the first floor, office space on the second floor, and Yoko and I would live on the third floor. I want to design a modern, urban building with Japanese design that would be a Punta Gorda landmark. I have a number of people in mind as potential tenants. In fact, I am pretty confident I could get tenants and/or partners in place before I even break ground. I am looking into the possibility....I would like to put our family name on the building -- a monument to remind people that the Cappiello's were here.

I am going to do this quickly or not at all...I'll let you know where we get to! Time's a wasting...