Rick and Pascale's Cancer Journey

Treatment in San Francisco

2007-10-24T22:54:00.000-07:00

One part of the conversation during my 10/15/2007 interview with Dr. Venook had to do with scientific integrity. His assistant had given me a 16-page consent document to read and sign before entering the study. I read it carefully at home, and then read it aloud in the car when Pascale was driving us up to San Francisco.

Part of the document indicated that the Novartis pharmaceuticals company was funding the study and therefore they would have access to all the data. This created a dilemma for me. I was not concerned about the data access, but I assumed that since Novartis is funding the study, then it must be true that all three drugs in the experimental cocktail must come from that same drug company. Wouldn’t it be better, I thought, if the scientific investigators had the whole worlds’ pharmacopeia at its disposal, not just one company’s?

When I brought up this concern to Dr. Venook, he stiffened a little and disabused me of incorrect assumptions. He said that only one of the three components in his experimental chemo is manufactured by Novartis. More important, he assured me that all his decisions in the design of the experiment are based on science. I apologized for the misimpression and promised to call him Galileo Venook from then on.

On Monday, October 22, Pascale took me to SF for the last set of tests required before starting the experimental chemo. The first test was a CT-profusion scan for which I had to fast. It is a precise measurement of the state of the liver that was administered by Dr. Yeh, a professor of radiology, not a technician. It took about 30 minutes, though it had been advertised as a 45-minute test. The second test was a routine electrocardiogram, administered by a technician in 5 minutes. It turns out that the short duration of the CT-profusion was due to a miscommunication between a technician and the doctor. They had skipped a portion of my body. So just as I about to sit down to lunch with my San Francisco-based friend, Michael Farmer, I got an urgent call from UCSF asking me to come back. Dr. Yeh himself was there to greet me and offered a truly sincere apology. In a way, I wonder if this mishap is a good thing – I can hope the radiology department will be watching out for me and be extra careful.

On 10/24/07, I had my first taste of the new cocktail. Again, there were administrative screw-ups, as the people in the lab did not know I had a port from which I wanted them to take my blood, and when I informed them, the word got to only half the people who needed to know. I am already aware of the difference in atmosphere between my sweet hometown hospital in Monterey and a great research hospital (UCSF came out as the seventh best hospital in the US in the recent US News and World Report ranking at http://health.usnews.com/usnews/health/best-hospitals/honorroll.htm ) Happily, the new cocktail went down uneventfully, and I felt fine afterwards.

My trips to SF have been aided by some good friends. Pascale and I spent a night at the home of Julie Ward and James Drew and their incredibly sweet children. Julie is one of the best cooks I know and she says I am one of the most appreciative eaters. She made a plum tart for dessert that without a doubt had some heavenly guidance from my grandmother.

On the day of the first chemo tasting, Pascale was down with the flu and my good friend and colleague Kevin Wood drove me up. It was an extremely generous thing for him to do and quite enjoyable to have his company.

New Hope in San Francisco

2007-10-20T19:53:00.000-07:00

Our meeting with Dr. Alan Venook at UCSF on October 15th was a success: He accepted me in the experimental chemo protocol -- Pascale and I were elated! It may not be possible for you to imagine how much this UCSF opportunity raised our spirits, after a month during which I was very sick, I had no chemo treatments, and we really didn't know if I’d ever get another drop of chemo, because conventional therapies are no longer effective.

I will be the tenth patient in Dr. Venook’s study. Good news so far: the other nine patients in the nine months the study has been in progress have not suffered much with side effects.

Abby asked the very good question: is there a control group that will be receiving placebo? The answer, happily, is NO. The experiment involves the combination of three FDA-approved drugs, gleevec, cyclophosphamide and Avastin. They have never been used in combination before, nor for this purpose. But since they are known to be safe individually, there is no placebo.

When Roger began talking with Pascale and me about my trying to become a research subject, he was somewhat noncommittal. We would ask how to find the best experiment, and he would answer that all research is unproven, so it is hard to distinguish one experiment from another. However, one thing he has been consistent about is his admiration for Alan Venook.

Dr. Venook called Roger to discuss my case the day after Pascale and I were in the city. Roger told us later, “The more I learn about the science of this experiment, the more I like it and the more it feels like a good fit for Rick.” The theory of the experimental treatment is to starve the cancer cells of blood supply, as opposed to just bludgeoning them over the head with a sledgehammer.

On Monday October 22, Pascale is taking me to UCSF for a CT-scan and electrocardiogram. We will spend the night before at James and Julie Drew’s home, which will be a really pleasant visit and make it a lot easier to get to the appointment on time.

The experimental chemo begins in earnest on Oct 24th. We will keep you posted.

An Accidental Laugh

About a week ago, I sent out an email announcing a blog update, but there was a typo in the link. The link had all the rickandpascale stuff right, but it left out the "s" in "blogspot." Amazingly, some aggressive hacker managed to claim all such typos as a direction to his own link, which happens to be a fundamentalist Christian dating service. This created a lot of confusion and then laughter. Don't worry, this Rosenthal boy is not looking for a new new team or a new girlfriend!

More Nice Moments

There have been some more nice moments in the last year, not mentioned previously.

Most important, I went to see my oldest daughter Abby and youngest daughter Marjorie in San Diego. Both of them have started relationships with really nice guys in the last year. I take my responsibility to interview new boyfriends quite seriously – just kidding, girls. But I sure like what I see. Matt makes Abby very happy and treats her really nicely. The same is true with Ryan and Marjorie, and, for that matter, it has also been true since 1999 with Graham and Claire. Not to put these guys under pressure or anything, but in case they need to know, I have serious mafia connections. Here are some pictures of Marjorie and Ryan:

Another special time was the trip Pascale and I took to the north shore of Kauai. It is the most beautiful part of the planet that either of us has ever seen so far. The trip was marred at times by severe nausea from radiation and chemo in Monterey, and from chemo administered in Kauai. But we love it. We found a reproduction of a painting by Harry Wishard of Hanalei Bay, that conveys better than any other piece of art we have seen the special feeling that we get from experiencing the unique air, light and beauty of the north shore of Kauai.

It Hasn't Been All Bad

2007-10-14T20:37:00.000-07:00

My last blog post was filled with a year’s worth of depressing details of my disease. The last thing I want to do is create the impression that the whole year was horrible – there were indeed many wonderful things that happened.

Good Trips

One of the first things I did on chemo vacation was to accept an invitation to visit my good friend Dave Morton, a brilliant operations research professor at the University of Texas. I gave a talk, jointly developed with Jerry Brown, on Secrets of Success in Optimization. There were a lot of very well known optimization experts in the room, in addition to Dave, but my colleagues were gracious in saying that the ideas Jerry and I had to share were (unfortunately) not published in any textbooks. I gave the talk with the goal of making an impression on the students, which seems to have worked. Keeping the faculty excited was a bonus. The University of Texas actually put my lecture on a website – here – if you are really, really hard up for entertainment some time. Dave was a great host in Austin. He took me to the world-famous Salt Lick Café, for some very righteous barbeque.

Another great trip was to the Johns Hopkins University, where I celebrated my 35th anniversary of graduation. It was so wonderful to see classmates. People have done many different and valuable things with their lives. Here are some photos, if you think you might know any of them.

On the same trip Karla Hoffman and Ariela Sofer hosted me at George Mason University, which (thanks in large part to them) is a real up-and-coming place. I am very lucky to count them among my friends.

I took a little detour to see another dear friend. I met her a few years but we got to know each other through INFORMS. She is one of my blog readers who many times pointed out that she would remember my approach to cancer and try to use it if ever needed. Well, so sad to say, she was diagnosed with breast cancer on Christmas Eve. I am sending her all the loving thoughts, prayers, and visualizations that I can, while she endures an onslaught of treatments.

Pascale's and my most recent trip was to Tucson. We saw old friends of mine Terry Connolly and Penelope Jacks, who were of course charmed to meet Pascale. I did the Secrets of Success in Optimization talk again at U of Arizona. Fortunately, it still has legs.

From Tucson, we went to Bisbee, Arizona, where some old friends of mine Randy and Cathy, live in what may be the most unusual house in America. It was blasted out of the side of a cave. There are beautiful streams and pools all around it.

There are a lot more pictures at http://www.thecavehouse.com/

Oh yes, the cave house is for sale.

The Dell Girls

I am so fortunate to be close to children. Most especially, my own granddaughter Skylar who visits often, but also the children of good friends.

Two of my favorite people in the world are Muriel and Luisa Dell. So are their parents Rob and Nancy. One day when I was feeling too weak to leave home, I called Rob at work and asked if he could drop by my house on his way home and bring a book I wanted from my office. When he came over, we got into animated conversation. He stopped abruptly and said, "I have to go home for dinner, come with me." (Pascale was working late that evening.) I resisted saying I was too tired and had no appetite, but he persisted. We went to his house in his car.

Nancy and the girls gave me the warmest welcome and a bowl of delicious soup, totally unfazed by the fact that Rob had given them no warning he was bringing company. I actually feel like family, not company, in the Dell home. Muriel and Luisa, who speak Spanish and English, call me Tio Rico. It has a double meaning: Uncle Rick and rich uncle. Even Nancy's mother calls me Tio Rico.

When it was time for Rob to drive me home, Luisa said in the sweetest voice, that I can still hear: "Don't do that Pappy. I want Tio Rico to sleep over." Let me tell you, words like that are as powerful as a barrel of chemo.

The Naval Postgraduate School

I have been working at the Naval Postgraduate School since I arrived for a one-year visiting professorship in 1984. Some visitors are hard to get rid of.

Working at this institution is something I value enormously. Every time I type the words Operations Research Department, Naval Postgraduate School, below my name, I swell with pride to be a small part of it.

Recently I was invited by the Editor of the INFORMS journal OR/MS Today to write about what makes our educational philosophy and approach different from other universities. This piece is available on-line here.

On September 11, 2007, the Naval Postgraduate School bestowed upon me the title of Distinguished Professor. There have been only 40 DP's in the history of the school, and I am the seventh from the Operations Research Department. I am very proud and grateful for this honor. There was a ceremony, which Pascale, Claire and Skyar were able to attend. The medal designating me as a DP was placed around my neck by the NPS president. It looks like Skylar thinks it should be hers. What a nice day that was!

New Realities

2007-10-12T01:03:00.000-07:00

Dear Friends,

It has been a year since I have communicated more than brief emails and phone calls on my cancer chronicle. Many of you have kept in touch and graced me with your most-appreciated communications and visits. I remain humbly moved by your concern.

There is a recent increase in the tone of your concern, and sadly, I must acknowledge that it is justified. To try to explain the current (October, 2007) concerns, I will try to review the key events of the last year.

Chemo Vacation Interrupted

From September to November, 2006, I enjoyed a vacation from chemo, which had been recommended by Dr. Alan Venook, the gastrointestinal cancer guru at UCSF (University of California, San Francisco.) Citing recent research in Europe, he advocated a six-month break, during which I would have an opportunity to regain lost weight, recover from the onslaught of chemo and generally enjoy improved quality of life. The European researchers found that chemo breaks for advanced patients did not shorten life expectancy. Roger concurred, but, off course, none of us wanted to go into this experimental vacation blindly. Roger performed regular monitoring with bi-weekly blood tests and monthly CT scans.

Unfortunately, the chemo break had to be cancelled after only two and a half months. In late November 2006, we discovered that the nasty critters in my liver had rejoiced and multiplied as the chemo was withdrawn. So I went back on the sauce. Despite this disappointment, I think the break was a good thing. It was wonderful having unimpeded appetite -- I regained all the weight I had lost to cancer (though not the muscle). More important, I gained strength with which to endure more future chemo than might have been possible otherwise.

Every cancer professional I have met since the end of my second year of chemo treatments expresses amazement about how long I have endured such strong treatments. When I hear their surprise, it puts me in a conflicted state of mind. On the one hand, it is a complement: they are praising my strength. On the other hand, the subtle message must be that other patients cease to achieve benefit from the chemo, possibly even die, before they receive as much treatment as I’ve had. How would you take that complex multifaceted message? Would you be grateful? I am. Would you be scared? I am that, too.

Roger was very happy to put me back on the sauce. Ever the loving and brilliant clinician, he would say: “You respond so well to everything I throw at you.” He has a remarkable track record going, it must be said. Whenever he has makes an adjustment to the chemo cocktail, it proves to be for the better.

That is not to say there have been no bumps on the road. The tumors have not monotonically decreased in size. Besides the Venook-inspired chemo-break, I had to take breaks for surgeries – when my colon was resected in August 2005 and when my monstrously large spleen was removed in February 2006. I also asked for a bit of a slowdown in chemo frequency while I was teaching in January-March,2007, so as to have more energy for my students. In all these cases, the cancer cells found an opening and ran with it.

Bumps on the road also come in the form of side effects. I have had so many days of fatigue, nausea, indigestion, acid reflux, belly cramps, soaking-wet night sweats, lack of poop-inspiration, blah, blah, blah. None of this would be noteworthy to whine about, but they are so unrelenting at times. I know there are other forms of cancer that lead to far more painful side-effects. In that way, I have been lucky so far.

More Metastases

Yet another worry in this business besides side-effects and the encroaching ineffectiveness of chemo is the ever present danger of further spread of the disease, which is known as metastases. Unfortunately, I got dealt those cards too during late 2006 and early 2007. Metastases are the same kind of cancer that originally attacked the body (colon cancer in my case), but they find a new area to colonize. In addition to my liver, the bastards have made a home in two different parts of my spine and, to a lesser extent, in my lungs.

Martha and the Irradiating Vandellas

December 2006 was not a lot of fun. In addition to learning that my liver tumors were as large as they had been 15 months earlier, I found out I needed radiation in my upper spine (T-7 vertebrae). Furthermore, chemo started kicking my butt harder every time. Radiation is a scary concept but not that bad when you get it. The first session is the longest. There is no radiation delivered, you spend about thirty minutes getting the equipment calibrated to aim at the right spot. I had tattoos inked on my sides and chest to help aim the beams. (I asked if the tattoos could spell “Pascale” but they said no – that’s the first time Monterey’s wonderful hospital let me down.) My radiation treatment was directed by Dr. Brad Tamler, a really good doc and very fine person. The zapper-in-chief was a radiation technician named Martha. I call her cast of ever-changing assistants the Irradiating Vandellas. They zapped me five days a week for four and a half weeks. Each treatment was over in a couple minutes, once they lined up their laser beams with my tattoos. There was one shot of radiation from the front and one from the back, the ray gun making a full circle around me on its gurney.

There was no pain involved as I received the radiation treatment, though, of course there are after-effects. I remained extremely fatigued, but that could have been the ongoing chemo, or for that matter, the ongoing cancer. The skin on my back and chest had perfectly shaped rectangular rashes, like sunburns, caused by the entry and exit of the radiation. That was not a big deal. The real problem was one that Dr. T warned me about: On its way through the chest to the target vertebrae, the radiation also burned my esophagus. I started feeling something like bad heartburn in the last week of treatment. It got worse, lasting about three weeks after the last zapping.

Having what is essentially a sunburn on the esophagus makes swallowing food extremely difficult. The staple of my existence for almost a month was yoghurt mixed with ground up narcotics. One time I forgot about my irritated esophagus. Nina made chocolate chip cookies with nuts from scratch. They smelled so good baking and then cooling on the stove top. I took a big bite, taking great pleasure in the taste, but then the warm, scratchy, sticky gooey cookie scoured my sunburned esophagus, leaving me doubled over with pain. Who would have thought a home-baked cookie could act like a dagger in the throat?

Another time I tasted a small segment of orange and thought I was swallowing battery acid. I adore fresh citrus in the winter – narcotics-laced yoghurt gets old.

Grapefruit

That reminds me of a movie I saw a couple years ago with Kevin Bacon and Colin Firth as 1950’s TV comedians. The picture was overall a B- or C movie, especially when it changed gears from comedy to mystery. But there were some great moments. Kevin and his partner are guests of a mafia boss in a luxurious New Jersey apartment overlooking the New York skyline. The boss wants the comics to perform privately for his friends so he pours on all the perks. The constant succession of scantily clad women doesn’t seem to be doing the trick. So then he tries food. In the best mafia accent, the boss says, “You boyce are really lucky. I got one a my guyz drivin’ up a box a graype-froods from Flaw-rida. You boyce ain’t gonna believe dese froods. Dey are da joooociest fuggin’ graaaype-froods in the world. Ain’t nuttin’ else you eva tasded like dem.” He gets so involved praising the citrus, there is nothing else in the world that matters. He brushes the women away like flies so he can fully use his hands to enact the pleasure of opening a juicy grapefruit. I can’t even remember the name of the movie. It wasn’t that good except for a few scenes, especially the way the boss pronounced “grapefruit.” It also made me remember that transportation of fresh produce was not as good when I was a small child as it is now. Progress.

Back to the Grind

After about a month, my esophagus recovered. My only problem for the next five months was that chemo got rougher. For about a week after each chemo treatment, I had no appetite, and had frequent nausea and vomiting. I recall one time that my dear friend Wilson Price was visiting when I had a vomiting fit. He was kind enough to help clean up, and he got a glimpse of what life is like for Pascale.

In May 2007, I needed another round of radiation for the middle spine. This time the rays went through the stomach, causing dreadful nausea and vomiting. It got so bad that I was not able to take as many radiation treatments as Dr. Tamler wanted. That was disappointing. Nevertheless, the two rounds of radiation (along with the morphine I take) have helped ease the back pain caused by the spinal metastases. The side-effects of the second round of radiation wore off in about 10 days, but not before we left Kauai for our second honeymoon. There is nothing really to recommend about vomiting in Paradise, but then again when you start feeling better, it sure is nice to be there.

Bad News of Summer

In early July 2007, Roger determined that the chemo mix I was getting then (and for which I was enduring so much nausea) was losing effectiveness. So I went on to a new mix, Veloda and Bectobix. The latter is a close relative of Erbitux, the drug that causes my face, arms and upper body to break out in painful and ugly rashes. The same occurred with Bectobix. Not fun.

Worse News

Late in the summer of 2007, Roger told me something I had hoped to never hear. He did not think Veloda and Bectobix were stopping the disease progression. Worst of all, he said he had no more magic in his bag, so it was time to search for an experimental treatment protocol at a university medical center.

Clinicians and Researchers

When I was first diagnosed, our good friend Karla Hoffman offered to have Pascale and me come live in her home, so that I could get treatment in the best research hospital in her area. This extremely kind offer set my mind in motion. Eventually, I came to understand the difference between clinicians and researchers, and when you want to go to each.

Dr. Roger Shiffman is a superb clinician. This means he sees patients day in and day out, and has fantastic intuitive abilities. He knows how I am doing just from the look in my eyes (not to say, he doesn’t use scientific data to evaluate me as well). If there is an approved therapy available to medical science that will work for me, then Roger will know about it, and he will pick the one that works the best.

When it comes to knowing the patient and prescribing the best approved treatments for them, researchers cannot hold a candle to a superb clinician like Roger. However, if the time comes when no FDA-approved therapy is considered effective, get thee to a university! Your research doctor may not have the bed-side manner of your clinician or ever get to know you as well. But when the time comes, you have to bet your life on a researcher.

Finding the Researcher to Bet My Life On

At one point, I considered the whole world eligible for finding a researcher to bet my life on. I contacted the Cornell-affiliated Memorial Sloane Kettering Cancer Institute in New York, which aggressively promotes itself as the best cancer center in the world. I was intrigued by the research of Dr. Nancy Kemeny there. She specializes in colon cancer metastases in the liver. Sounds like a great fit, right? Wrong. It turns out she wouldn’t talk with me because I have metastases in other places, and she wants only the liver to be infected for her experimental subjects. Damn.

Gradually, I reduced my thinking to the two cancer research centers within driving distance, Stanford University and University of California, San Francisco. Given that experimental treatment will involve weekly or bi-weekly visits to the research site over a long time, it is practical to look at just these two. Moreover, they are both highly reputed. In fact, Roger believes the program at UCSF led by Dr. Venook is probably the best gastrointestinal cancer program west of the Hudson.

I have applied for admission to an experiment of Dr. Venook’s that seems applicable to my situation. (It feels like I am applying to graduate school again.) He and his team have been studying all my records. Pascale and I are meeting with them on October 15th, and hope to know soon thereafter if I am admitted. Dr. Venook will want to know if I pass all the screening tests for eligibility, and if I am strong enough to take whatever he is administering.

Two Out of Three Weeks in the Hospital

I had a hellish last month. There were two unplanned hospital stays of a week each in a three week stretch. I got home a few days ago. During the week between hospital stays, I lay on a cot in Roger’s office all day, because I was so weak from depleted minerals.

The first hospital stay was a result of fevers that would not go away. Because I do not have a spleen, it is of great concern to my oncology team to keep infections away. I received a ton of antibiotics and had a hundred tests, but the cause of infection was never discovered. It just petered out after a week. One of the suspects was my port-o-catheter, the device that was surgically implanted in my chest in April 2005 as a convenient and painless method for administering chemo and taking blood samples. After it was taken out, the catheter was cultured but no bugs were found on it. Just the same, it was good to have it removed and replaced a week later by a newer model.

During the week I lay on Roger’s cot, I received massive infusions of potassium, probably the equivalent of 10,000 bananas plus magnesium and other minerals. My muscles had gotten so weak from potassium depletion. Again the cause was unknown.

One mystery was solved. Everyone knows the feeling of getting dizzy when you stand up too fast -- I was having very frequent cases of that little problem. Roger figured out that it was due to my adrenal glands not producing enough adrenalin. This is a common problem among long-term chemo recipients, like me. (I should have figured out that my adrenalin was low, because I wasn’t bugging Pascale with dumb arguments and fights for a while.) Roger put me on cortisone – and it has fixed the adrenaline and dizziness problems. (Oh, yeah, Pascale and I had a dumb argument last night. All my fault, of course.)

The second hospital stay in three weeks was scarier. Pascale took me to the emergency room at night because I was having excruciating pain breathing. It took her half an hour to help me get in the car. Over the week, there were several hypotheses posed and eliminated. The surviving explanation is that one of the liver tumors has grown larger, harder and closer to the edge of the liver, so that whenever I inhaled, even very weakly, it got squeezed by the diaphragm and ribs. The liver has no nerves but the casing (or capsule) around it does, and that was where the excruciating pain originated. There was also a shooting pain near the collarbone, which is consistent with the inflamed casing theory.

For a few days there was intense discussion about whether I should receive radio frequency ablation (RFA) on the tumor on the liver’s edge. RFA is a low-power, long duration form of radiation. It would have required at least two hours of general anesthesia. My friend and operations research colleague Ariela Sofer has solved a lot of the mathematics problems that help doctors deliver RFA optimally. She was on the phone and on the internet late into the night helping Pascale and me get smarter about the subject. In the end, RFA was not called for. But we remain so grateful for her late-night support.

I am feeling much better now, thanks to anti-inflammatory drugs that help reduce the pain in the liver casing while breathing. In addition, my daily background morphine dosage has been increased, and I am allowed to take more morphine for breakthrough when the pain comes back. All in all, I am feeling good and not at all dopey with these drugs. (Roger tells me that some patients take ten times as much morphine as me and still function well, so I am not a junkie.)

Ready for More

It has been a month since I have had any chemo. This is because 1) we don’t know yet what kind I should take, and 2) I was much too weak during my skirmishes with fever, potassium depletion and difficulty breathing. I am really THIRSTY for more healing juices to resume the war against my cancer. Enough with the skirmishes.

Knowing I need to transition to the world of experimental medicine from the relative comfort of Roger’s approved therapies is a very difficult thing to contemplate. It makes me sad, angry, scared and depressed. Occasionally, I hear nice stories about people getting great benefit from experimental medicine, but believe me, the proven stuff sits better on the palette.

I lie awake at night contemplating questions. Some are so deep and important: Will I see my daughters and grandchild(ren) develop into all they will be? How much happy time will I have with Pascale? How will she deal with the inevitability of my condition and whatever comes after? Will I see my dear family and friends many more times? Will my parents (91 and 88) outlive me?

Then I might ask some light or even ridiculous questions: Will I get to taste next summer’s fruits? (This year was the best I can remember for plums but not so great for peaches.) Should I bother to replace that sport jacket with the hole in the elbow? Should I write down that dental cleaning appointment automatically scheduled for late next year?

I am not a cryer. It is probably for two reasons that carry over from my childhood: I did not see my parents cry, and my big brothers teased me to the point of crying so many times as a kid that it must have toughened me up.

But one day about two months ago, I was different. I had been through a bout of nausea and vomiting, and every cell in my body felt weak and tired. During that moment, I completely lost my fighting spirit. Pascale took me to the hospital. I cried in the car, and bawled like a baby when I saw one of my favorite Filipina nurses in the oncology ward. My loss of fighting spirit lasted about an hour. I ended up not staying in the hospital that day, and feeling ready to resume the fight when I got home.

I am not proud of the fact that I don’t cry normally. It actually felt good later on that most unusual day to have been through a physical release of fear and emotion. By the way, it brought me closer to Nurse Carolyn. She gave me the recipe for chicken adobo, the Philippines’ national dish.

How is Pascale?

Some of you have kindly asked how my beloved wife is doing through all this. Thank you. I lack the words to tell you, so it would be better to hear from her. But here are a few thoughts from me, since she is not as exposed and exhibitionistic about all of this as I am.

It may sound like a cliché but there is a lot of truth in the saying that the caretaker’s journey is harder than the patient’s. She said that this was especially true in the early days, when she knew the truth of my prognosis, and I was in total denial, to the point of planning backpacking trips.

People place expectations on her, and she is often critical of herself for not doing more, but I think she is an absolute angel. I could not ask for more. There is an excellent book by the philosopher Ken Wilbur and his late wife called Grit and Glory about her battle with cancer. We recommend it to anyone who wishes to understand more about this process.

Pascale has taken two courses, at UCSF and at the University of Oregon Medical School, on massage therapy for cancer patients. This is very difficult work, requiring incredibly delicate control and thorough knowledge of the patient’s condition, especially with those with lymph edema. Pascale is a champion, I am so proud of her. As good as she is at cancer message, Pascale will wait some time before dedicating herself to the pursuit. For now, it is a bit too close to home.

Sad News Tonight

We just found our cat Cleo struck dead by a speeding car, and buried her in the garden. She was a great companion, especially for Pascale on nights when I was in the hospital. Pascale and Cleo were bonded, it is a hard blow and she will be missed very much. She was a really smart cat who craved intimacy and we know she went straight to kitty heaven.

This blog posting has been mostly about the heavy things going on in the last year. There have also been some wonderfully sweet moments, and I hope to recount some of those soon for the next blog. Rest assured, my support teams of medical people, daughters, step-kids, brothers and other family, and great friends have all been god-sends. I cannot thank you all enough.

Good Result

2007-01-27T16:55:00.000-08:00

Great results yesterday after a couple of not-so-much-fun months: my tumors have shrunk significantly since November! They had grown during the chemo vacation of September-October, The vacation was cut short from the six months originally anticipated due to the growth. I have no regrets about the vacation. I gained needed weight during that time and I believe it increased my ability to endure chemo.

Thanks to all for the many prayers, visualizations and kind thoughts. There is no way to say how grateful I am.

Believe it or not, I am teaching, with some help from my great colleagues.

I hope to fill in details and end the five-month blog hiatus before long.

Blog Wild, Blog Mild

2006-10-01T11:44:00.000-07:00

I have been writing about living with cancer since it was diagnosed 18 months ago. In the last post, I went blog wild – writing over 4000 words. This one is blog mild.

I mentioned earlier that this series of publicly accessible writings has been useful in three ways: bringing people up to date if they want to be, helping others who face or anticipate similar problems, and helping myself understand my experiences and feelings by trying to explain them to others.

Unwisely, I failed to mention a fourth benefit. The blog has prompted others to share their thoughts, experiences and feelings.

Some people have been moved to share emotionally wrenching episodes in their lives and how they dealt with them. I am grateful for these insights into their lives.

Some people send me breaking news from cancer research frontiers, or promising accounts of alternative treatments.

Some people latch on to my attempts at humor, and respond with amusing lines of their own. One wise soul commented that humor is a good way to deal with fear.

Other readers pick up a little piece of my background, such as having taught sailing in my youth, and write about their similar experience.

A number have said that the blog prompts them “to think and rethink about our own lives and values,” as Wilson Price put it. A few younger professors say it helps increase their resolve to spend more time with their kids, money and professional reputation be damned.

I love to hear from former students. They notice that my approach to the cancer is infused with the operations research way of thinking. Kirk Yost said, “Issues are presented clearly and concisely, and the relevant experts are identified and quoted. You are applying analytical skills to a difficult problem and giving the rest of us advice that would be difficult to obtain otherwise.” Heartwarming praise from a tough critic, indeed!

Kirk went on to say, “Also, length is not a problem. Most of your audience probably reads at a rate of at least 300 words per minute, so the 4000-word post takes less time than it takes me to walk across the Pentagon parking lot.” (It's nice of him not to mention that the Pentagon parking lot is probably larger than the city of Monterey.)

Of course, no writer gets uniformly positive reviews. One of my favorite authors, Ann Patchett, says good reviews thrill her for about ten minutes and bad reviews crush her for about ten minutes. Her actual point is that she does not care much about critics: "It's just as unnatural for people to sit around and tell you you're a genius as it is for people to tell you you're a fraud. It's not healthy either way."

Be that as it may, I don't hesitate to say Ann Patchett is a genius. I also admit that the positive feedback I have received on my blog warmed me up for longer than ten minutes. A not-so-positive email commented on my excessive wordiness, and said it was not desirable to read about other people’s illnesses. Okay, I can understand that, though I’m perplexed as to why they bother to tell me.

But fear not, I shall blog on.

Even if it is just to say hello, responses from readers are truly a godsend. Thank you all!

Cancer Update

I have been on chemotherapy vacation for seven weeks, with increases in appetite and weight, but not much increase in energy. An MRI last week showed that the spinal tumor in T-7 has not grown in the last two months, but there are other smaller ones above and below it. We are still holding off on radiation.

A CT scan the same day showed that the liver is essentially stable except for one tumor that is a bit larger. There are also some very small spots on my lungs, which have been there since the first diagnosis. My back is still sore. We don’t know if it is cancer-related or just due to lack of exercise. Depression is the key problem. We are rethinking approaches to it.

An exception to the low energy and low spirits was my birthday, when Pascale and I went camping at Harbin Hot Springs. We pitched a tent by a babbling stream and took frequent soaks in the soothing thermal pools. I did a lot of walking the first two days. By the third day, my energy waned. Pascale has been a champion through all this. It is a difficult ordeal for her. Her old friends have given her great support. We wish they lived closer.

P.S. If you want to be inspired by the joy of scientific discovery and witness academics behaving beautifully, read or listen to this profile of biologist Bonnie Bassler. Share it with any bright, impressionable youngster (or adult) you know who has time to make decisions about education and career.

New Battle, New Plan?

2006-09-10T17:56:00.000-07:00

The New Battlefront

In the weeks following my last blog in May, a new tumor was suspected, confirmed and reconfirmed in the T-7 vertebra of my spine. It is another metastasis of the colon cancer, in addition to the liver metastases that were part of my original diagnosis in April 2005. It is fairly unusual for colon cancer to spread to bone.

This was a surprise to Roger, who tried valiantly to look for alternate explanations for the anomaly in my spine. After three sets of images, including a complete bone scan, there was no doubt that it was more cancer. Fortunately, no tumors showed up in other bones.

Roger referred me to Dr. Brad Tamler, a radiation oncologist at our hospital in Monterey. Dr. Tamler was on vacation. Before he returned, Pascale and I went to New York to help my parents move from their home of 63 years to assisted living in Connecticut. We worked with my brothers and my sisters-in-law to make this move as smooth as possible. Well, to be honest, Pascale did the work of ten people and I cheered her on.

Interlude

The time with family on the east coast was a wonderful interlude in my cancer saga, though the tumor in my spine was always in the background. It was sad to see my parents leave the home in which they raised us three boys, built their lives, and entertained friends so many times. A friend of theirs put it so poignantly: “I have seen the finish wear off the arms of their dining chairs.” It was truly the end of an era. My grandparents had moved to the area of New York we called home nearly a century ago. My parents lived within walking distance of every school they ever attended. Now they are near my brother in Connecticut, in a comfortable home for elders with dementia.

My parents are happy in their new home, though confused about where they are and how long they are staying. The staff say they are so sweet and really liven up the place. Sometimes they are really funny. For example, I asked my father to recount a trip he took across the country by train in 1939 with his Uncle Willy to see his brother Ed in San Francisco. Dad went on and on about all the girls he met, then Mom said, “You men are all talk.” I said to my mother, “I thought you were going to say ‘you men are all dogs.’” She said, “No! I like men,” and then with timing that Jack Benny would have envied, she added, “almost as much as I like dogs.”

At one point my mother and I took a walk in the garden. She touched my chest and felt the chemotherapy port that was surgically implanted in April 2005. She was startled and asked what it was. I evaded the subject and she forgot about it, but at some level, I think her mother’s intuition tells her I am sick. My brothers and I still agree that my parents should not be told about my illness.

The Doctor’s Visit from Hell

We returned to Monterey to chemo and then an appointment with Dr. Tamler. I was expecting to start receiving radiation therapy every day for three or four weeks.

My friend and colleague John Birge of the University of Chicago has been working with the radiation oncology department there on the application of operations research methods to help improve the quality of care. He made the extremely generous offer of talking about my case with his colleagues. They subsequently offered to study my tumor and report their recommendations informally to my physicians in Monterey. These guys are world-renown radiation oncologists, and as John discovered on the internet, Dr. Tamler had actually done some of his training with them. What an asset to have in my back pocket!

So, Pascale and I show up for our appointment with Dr. Tamler. It was the weirdest medical appointment of my life. The doc started out introducing himself, Patrick Hanratty. [This is not the real name of the guy we saw. I changed it so I don’t hear from his lawyer, but if you need to know his real name, get in touch.] The conversation went something like this:

Hanratty: “Hi, I am Dr. Hanratty.”
Rick: “I have an appointment with Dr. Tamler.”
H: "You can see Dr. Tamler but you'll have to wait two weeks, and anyway, I am the guy to see for heads."
R: "I am not here to get my head zapped."
H: "I mean the pituitary gland."
R: "I am not here for that either. You must be thinking of another patient. We are definitely here to see another doctor. Roger Shiffman recommended Dr. Tamler, and his recommendation means a great deal to us."
H: "Well, Dr. Tamler is not taking new patients now. You will have to wait at least two weeks while he clears out his practice."
R: "We have been waiting over two weeks. Roger wanted us to wait till after Tamler came back from his vacation in Hawaii."
H: "Good, good, good... Okay, let's start talking about your case."

[He seems to say "good" a lot, even when things are bad. My blood pressure is approaching seven thousand. Pascale is not saying a word, but I can feel her presence next to me. I can tell she is as upset as I am.]

R: "No, how about you step outside the examining room and read my chart -- I am here for a tumor in the spine, not the head. Meanwhile, I'll call Roger's office and find out what they know about the change of personnel."
H: "Good, good... Let's start all over."

[Hanratty steps out. I try calling Roger's office but cannot get any information, only leave a message with one of Roger's friendly and competent nurses.]

Hanratty comes back and reintroduces himself. He says "even if you see Dr. Tamler later, I will proceed with the interview." Hanratty may have some good qualities as a doctor, despite indications to the contrary, and he may have been thrust into an unplanned appointment, but he is definitely not a good interviewer (or quick chart reader). He proceeds to ask questions in the form of statements with question marks at the end. For example:

H: "You were diagnosed in 2003?"
R: "No, April 2005."
[Shouldn't he have known that or at least asked a true question, like "when were you diagnosed?"]

H: "You started chemo after your colon resection?"
R: "No, my port was implanted the day after the diagnosis and the chemo began two days after that. My first surgery was four months later."

After four more incorrect statements in the form of questions, my blood pressure is approaching seven million. I said I was too uncomfortable to stay there. Pascale and I stood up. On the way out, he said Dr. Tamler would see me at 2:00 pm the next day. Go figure. His practice cleared up? What in the world did Hanratty mean about Tamler? He definitely diminished our confidence.

Pascale says the visit with Hanratty was actually a lot worse than the way I have described it to you. My daughter Marjorie asked if he was really a doctor or “some random guy off the street.”

Faith Restored

The next day we warily approached the same office. I was so glad to have Pascale with me. She is a superb judge of people. She can help me answer questions correctly and ask some good ones of her own. We decided if we had any lack of confidence in Tamler, we would go up to Stanford.

As I walked in, I rehearsed my prepared speech. “Before we begin, Dr. Tamler, I don’t ask you to explain what happened yesterday, but just to please answer one question. Is there anything going on in your life – I don’t need to know what it is, whether a malpractice suit, a divorce, a disease or a hangnail – but if there is anything that will keep you from performing at the top of your game, will you please tell us now?”

I never had a chance or a need to deliver that speech.

Dr. Tamler walked into the examining room in full stride. He introduced himself and stated the agenda – a review of my history, a physical examination, his findings and recommendations, and finally questions. He continued to pace around the room with his chest out proudly as he spoke, reminiscent of John Houseman playing the law professor in the movie Paper Chase. He recited my case history from the day I visited my family doctor complaining of fatigue to the most recent chemotherapy. It was complete and accurate, and he never once looked at any notes. Pascale and I occasionally looked at each other with mouths agape.

The doctor then took all the time we could have hoped for to carefully examine me, to explain his findings and recommendations in terms we could understand, and to answer all our questions. We were filled with confidence.

Dr. Tamler's recommendation concerning the spine tumor was to do no radiation at that time. He said to continue chemo with an added infusion of Zometa for preventing osteoporosis and, of course, to monitor the situation closely. If my back becomes painful or the tumor appears to be growing quickly in any future image, then we should zap it. His reasoning was that radiation can remove pain (with 85% probability) but it cannot cure cancer unless it is aimed at every cancer cell in the body. Unfortunately, it is too dangerous to zap the tumors in my liver. So he said that zapping an isolated tumor in the spine and leaving the others would be like the US bombing the Soviet Union's nuclear weapon arsenal during the Cold War. We would have obliterated most of it, but the few weapons that would have been left could still have destroyed the world.

I asked Dr. Tamler if he thought we should consult the gurus at the University of Chicago. He said that it was fine to go there, and if any radiation oncologists in the world can zap tumors in the liver, these would be the right guys, but it would be very experimental. He thought I was doing too well on my chemo to take this risk. He also said that if the time comes later to apply radiation to the spinal tumor, then this is a fairly routine, small-scale case.

Dr. Tamler took us into the image viewing room to show us the tumor. He made a passing reference to our horrible doctor’s visit the day before. He offered no explanation for his colleague’s lack of preparation. He acknowledged that he had fallen behind in his work since his vacation and Hanratty was filling in. We can see how Tamler could lack the time to finish his work, if he studies and treats each patient as thoroughly as he did me.

The next day Roger came to his office on his day off. We spoke at length and agreed to follow Dr. Tamler’s advice, since I did not have back pain. We asked Roger if he thought we should take advantage of the Chicago connection. He said: “Of course you can, but I may have a better idea.”

Another Interlude

One day when I was feeling lousy, lying in bed, I thought of something I very much wanted to do before my time comes to check out of this planet. I wanted to see my cousin Macky who lives in Maine. She is a distant cousin but her family had always been close with my mother’s, especially after my mother’s father’s died at a very early age.

Macky is 91, housebound and wearing a tube for oxygen, but with a mind as sharp and witty as anyone. Macky was the director of a girls' camp, where I worked as a sailing counselor for four summers in the early 70's, including one year as a grad student. That was a great gig and Macky was such a pleasure to work for. She is a legend to many generations of girls fortunate enough to attend her camp.

My fellow graduate students in sweltering Atlanta could not believe the audacity of my leaving the halls of academia for a girls' summer camp – progress toward PhD degree be damned. In retrospect, I wish I had taken more play time in the summer, especially when my daughters were young – money and professional reputation be damned. It's a pity I never got to teach my girls how to sail. (But I did take them to New Zealand and a few other nice spots on sabbaticals, and Marjorie tells me she figured out how to sail by thinking about the physics and trying.)

Roger has always been great about giving me time off from chemo for work and family. I combined a trip to the INFORMS board meeting in Baltimore with a train ride to see my parents and my nephew Benjamin in Connecticut, and then a train to Boston to meet up with my niece Shana, who drove to Maine. Shana and I had a great time, with a lot of laughs and a wonderful visit with Macky. We were also lucky to see her sons and some of their families. On the way back, we saw the camp, which is flourishing. Though Macky has been retired for a while, her legend is still large.

If you ever plan to drive in Maine, you should know it is non-navigable. The old joke about the tourist asking the native for directions and being told “you can’t get there from here,” originated in Maine. Shana and I were fooled by two major highways that swapped numbers since our map was published. We also saw a sign on a country road indicating that eastbound and westbound were in the same direction. We stopped to take a picture. The resident of the house beside the sign came over, took a picture of us in front of it, and then commented, “Come to think, that direction is really north.”

‘Roid Rage

Chemo resumed soon after returning from New England. The pattern with chemo is that it causes a few days of digestive distress, loss of appetite and steroid-induced aggressiveness. I have some awareness of the behavioral change but cannot control it. Around our house we go on what is called “asshole alert.” It is very difficult for Pascale, as I pick meaningless little arguments with her. One time I argued with a supermarket clerk about the price of an item. The poor guy did not know what hit him. It turned out I was wrong but he did not have the confidence to defend himself. I went back the next day to apologize and settle accounts.

The worst case of steroid rage was earlier when I was trying to drive through the gate of my school and an armed guard stopped me. I was in Pascale’s car which does not have a proper Defense Department sticker. I pulled out my ID card and argued that I have been working there for 22 years. He kept flexing his huge muscles and saying “I understand, sir,” with a voice I thought reeked of mock sincerity. As I continued to argue, he turned sideways so his gun was at my eye level and gave a hand signal to his two armed colleagues. You probably never thought a skinny 55-year-old professor with a cancer pump and a big mouth posed a major security threat to the western world. I drove around to the other gate but he had already alerted the guard there not to let me in. Fortunately, the woman at the sticker office understood my predicament. My wife is French. It was hard enough getting her to marry me, I don’t dare ask her to put a US military sticker on her car. The sticker lady gave me a piece of paper to flash at the gate if ever questioned again. It hasn’t happened again but the muscular guy still scowls when he sees me.

I guess there is a good side to the steroids. How many other guys have a legitimate excuse for acting like a jerk?

We’re Off to See the Guru

When Roger said he had a better idea than consulting informally with the University of Chicago radiation oncologists, he meant arranging a consultation with Dr. Alan Venook, the lead professor in gastro-intestinal oncology at the University of California, San Francisco. Prof. Venook was the brilliant guy who explained my spleen enlargement at the last Northern California oncologists’ meeting, when Roger spoke with him after his lecture. Roger offered to go with us to the consultation if he we could schedule it on a Thursday, his day off. That would have been great for us (and Roger would have had an excuse to see his grandkids in the city), but the two afternoons a week when Venook sees patients do not include Thursdays.

We waited about six weeks for our appointment in late August. It followed the weekend when Pascale took a workshop on massaging people with cancer, coincidentally, also at UCSF. Pascale was truly inspired by her teacher and her workshop. More on this later.

Pascale and I thought Prof. Venook seemed worthy of his reputation as the colon cancer guru. He's intellectual in the best sense, honest, direct and soft-spoken. A protégé, Dr. Wong, did the intake and examination. Dr. Venook came in to talk with us after the two discussed my case. Dr. Wong and a nurse stood at attention while the Professor spoke calmly with us.

Dr. Venook's first question was "what is your goal?" A good question. I said to use whatever means possible to sustain my life while medical science proceeds apace to find a cure for my disease. He nodded. We think that if I had said something like "I am here to find out how to beat the cancer," then the meeting would have gone a lot differently. He agrees with all the other docs that I have endured chemo a surprisingly long time and my condition has no known cure. Later when asked, he said he does not see a cure on the horizon or an appropriate clinical experiment for me to join. On the other hand, I think lots of advances including some chemo drugs I have taken were not imagined a short time ago. Still, no well-trained physician would ever offer hope to a patient based on speculation.

Dr. Venook recommends a 6-month vacation from chemo, reviewable after monthly blood counts and bi-monthly CT scans.

The reasons for the chemo vacation are to give my liver and the rest of my body a respite from toxins, and to improve my energy and quality of life. The chemo break probably will not increase my life expectancy, but according to recent research conducted in Germany on 400 patients, it should not decrease my life expectancy either. Four hundred is a large number for this kind of study. My niece Jessica heard about the study at the last national meeting of oncologists, yet she was surprised by Venook's advice.

Dr. Venook also recommended radiation therapy on the tumor in my spine sooner rather than later. It is not painful but is more sensitive when poked.

Now What?

We had a meeting with Roger the next day. He may have been surprised as well by the proposed chemo hiatus, because he often says that I “respond so well to everything he throws” at me. He saw no problem with Venook’s recommendations, canceled chemo for that day, and set up an appointment for the next week with the radiation oncologist Brad Tamler.

Dr. Tamler’s reviewed the history again, performed another thorough examination and said he did not think there was enough change in my condition to warrant the use of radio therapy yet. We looked together at the images of the last two MRI’s and the tumor in T-7 had not grown. He noticed sensitivity on my spine and weakness in my muscles, but no pain at the T-7 site. He then called Roger to ask why radiation was recommended. I did not hear both ends of the conversation but take it that the message was essentially that Venook thought it was a good idea to stay ahead of the tumor rather than play catch-up ball later. Tamler commented that it is ironic that he is the only doctor who stands to make money if I get radiation, yet he is the least enthusiastic. He said he is prepared to give it to me if I want. It would be administered five days a week for three weeks. The only side-effect he said I might feel is a burning sensation in the esophagus starting a week later and continuing for about two weeks. Dr. Tamler also said that if we do it now, then I would not be able to receive radiation in the same place later. This is an argument for “keeping the powder dry” and saving it for later. As he said in the first appointment, the radiation will not necessarily stop the cancer in my spine. He said it might just “beat it back for a year.” Sounds like poison ivy.

I am thoroughly confused about what to do next. Medicine is not an exact science. We have to make guesses. "We"includes doctors and patients.

Separation Blues

The uncertainty is occupying my mind most of the time. I haven’t had any chemo for three and a half weeks, and have none scheduled. Nevertheless, I am still fatigued and bothered by the loss of muscle. I do no substantial physical activity. When I do simple things like touch the floor or get into a car, I feel tweaks in my back muscles. No one knows if this is cancer-related or just due to lack of strength caused by lack of exercise. Exercises have been prescribed by my physical therapist, but I seem to lack the energy. It is hard to believe that two summers ago I was backpacking with Harlan Crowder in the Sierra, and keeping up with Pascale on the tennis court.

All of this is depressing. There is a new aspect to my depression as well. The separation from chemotherapy and loss of my regular ritual of visiting the oncology office is frightening. I feel like I am no longer proactive in my battle with cancer. I miss Roger and his team. I have brought most of my family to the office to meet them. His nurses know so much about the little problems cancer patients face. I want them to still be looking out for me. I miss Beverla, the receptionist. Every time I go there, Tina Turner, as I call her, shares some laughs with me and passes along a compliment, usually about Pascale. The whole office feels like family. I needed them and really felt cared for by them. I feel scared that I may be battling without their protection now.

Why I Blog

Some people ask why I write publicly about such personal matters. The purposes of it are to keep friends informed, to possibly help others who face similar circumstances, and to serve as a form of therapy for myself. It might seem a bit self-indulgent or exhibitionistic, but I find it useful. Trying to write my experiences, feelings and thoughts in a way that others can understand helps me understand. I know my ability to express feelings is pretty limited, like many men. Being around Pascale the last five years has helped. She has a Ph.D. in expressing feelings. I have probably advanced from kindergarten to the fourth grade since I met her.

Sometimes I learn that others have benefited from the blog and that is very gratifying. For example, a number of friends have been inspired to get colonoscopies. Another example I just heard about is from my friend and fellow INFORMS board member Susan Albin. She has been sharing the blog with her sisters who live in different parts of the country. When they read about my brothers coming out to Monterey for an “unsupervised” visit, they resolved to leave husbands and kids behind briefly and get together. Have a drink for me when you do it again, Susan!

I continue to send my love to all and remind you to visit your family and friends while you can.

Professor Rosenthal is "Only Inches Away from a Nobel Prize"

2006-05-15T12:32:00.000-07:00

We Dodge a Bullet

Since the last posting, I passed the one year mark of knowing I am living with cancer. It has been a wild, wild ride, including the last week. The ride is not over yet. I wish I wasn’t tired so much of the time. I am sick and tired of being sick and tired, but I’m very grateful to feel a lot better than a year ago.

We had a huge scare last week. For three days, I had a constant dizzy feeling like motion sickness or the light-headedness you sometimes get for a minute after standing up too fast. It started on a Saturday, when Roger was off duty. Though he probably would not have minded my calling him at home, I called his partner on call, Dr. John Hausdorf. John spoke to me both Saturday night and Sunday night. He was very much aware of my case and had pondered a lot about the spleen mystery last fall. Like Roger, John is smart, compassionate, non-egotistical and an excellent communicator. We agreed it was better for me not to go the emergency room and to wait and see Roger on Monday morning, when I already had an appointment. He said the imaging technology available on weekends is not as good as on weekdays.

It took a while for the words “imaging technology” to sink in and make me realize he was thinking about brain tumors.

Roger's intuition on Monday morning was that I had benign positional vertigo. (How I love that word benign!) He prescribed two things. The first was an appointment with an ear-nose-and-throat specialist (ENT) to look into this hypothesis. The second was a brain scan by MRI to rule out something much worse. If the vertigo theory was correct, he said, the condition would probably go away on its own.

To my pleasant surprise, Roger did not cancel my chemo for Monday. He made one modification, postponing one ingredient of the chemo cocktail, Avastin. It’s a relatively new monoclonal antibody, which could not be immediately ruled out as a cause of the dizziness. Avastin is an unlikely culprit since the onset of this dizziness occurred three weeks after chemo. I think a far more likely scenario is that it was a result of a strenuous (for me) physical therapy I did on a treadmill the day before the dizziness started. (I was just walking on the treadmill, a far cry from my running and backpacking days, but I managed to double my heart rate, probably for the first time in over a year.)

So what a day that Monday was! First the exam by Roger, then chemo, then some Nobel-inspired neuropathy therapy for my feet (more on that later). Then to the hospital for the brain scan. The MRI was delayed two hours because they needed to find an oncology nurse to temporarily disconnect the portable chemo pump that I wear for 24 hours after chemo infusion. I was too dizzy to drive, so Pascale did more driving than a soccer mom. I really needed her support, both physically and emotionally. I was quite a basket case –with the wild steroid rush from the chemo cocktail, some incidental indigestion, the zing in my feet from the neuropathy therapy, the foreground of dizziness, the background of major anxiety about the possibility of brain tumor, and the utter exhaustion of a noisy, claustrophobic half-hour with my head in the barrel of an MRI machine. The only thing that kept me from going crazy in the barrel was saying praises for the good fortune of having so many people pulling for me.

The brain-scan technician said the radiologist would view the MRI and report his findings to Roger the next day. So Pascale and I went home and sat with our worries and my bonkers combination of steroid speediness and dizzy tiredness. I was trying to get distracted by NBA basketball playoffs, and Roger called during the game, at almost 10pm. He had heard from the radiologist that night, who said there were no abnormalities in my brain! (Hey, even if you are thinking you don’t agree with him, please don’t argue now.) Roger was so great to call rather than let Pascale and me go to sleep worrying. We were overjoyed and so, so grateful.

Later in the week, I saw the ENT whom Roger recommended, Dr. David Awerbuck. By coincidence, I knew David and had just run into him for the first time in five years at the synagogue, the night before the onset of the dizziness. We had a great chat, mainly about kids, because his lovely son and four other cute, smart seven-year-olds were assisting with the Sabbath service. He told the story of the great physicist Isadore Isaac Rabi, who was once asked why he became a scientist rather than a doctor. Every night before he went to bed, Rabi’s mother would ask not what he had learned in school that day but whether he had asked a good question. It was so natural to become a scientist, Rabi said, because he had been encouraged to ask questions.

When I saw Dr. Awerbuck in the office, the dizziness was almost gone and he attributed it to the vertigo that Roger suspected. He said it could have been brought on by an ear infection or by the dislodging of a crystal in the inner ear when I was pushing hard on the treadmill. We will probably never know. It doesn’t matter. A major bullet has been dodged.

Inches Away from the Nobel: Robert Furchgott and Neuropathy Therapy

So what’s my connection to the Nobel Prize? It turns out that Robert Furchgott, a third-cousin of my mother and close friend of the family, is co-winner of the 1998 Nobel Prize in Physiology or Medicine. He won for "discoveries concerning nitric oxide as a signaling molecule in the cardiovascular system." [http://nobelprize.org/medicine/laureates/1998/furchgott-autobio.html]. His discoveries in basic science enabled others to develop Viagra, for example. Bob is an extremely soft-spoken and modest man, not in the least interested in the financial ramifications of his work. After the prize, the elected supervisor of the town in New York where he (and my parents) lived wanted to erect a sign, “Home of a Nobel Prize Winner” with Bob’s name on it. Bob’s modesty would not allow that, but of course it did not slow down the politician. The supervisor put up the sign anyway, with his own name on it. (Bob is generous about lending his name in other ways, for example writing an inspiring letter to Marjorie’s middle-school science class.)

A few months after receiving the prize in Stockholm, Bob came to my parents’ house for dinner while I was visiting. He brought his Nobel gold medal and a scrapbook that the Nobel committee had given him. (He was allowed to bring 12 family members for the ceremonies and banquets.) My Mom took a picture in my parents’ screen porch of Bob and me. He is holding his gold medal. I have this picture on my office door with the caption, “Professor Rosenthal is only inches away from the Nobel Prize.”

Seven years later, Bob is 90 and retired to his birthplace, Charleston, South Carolina. I am still a professor who is a million miles away from a Nobel, though with a new focus: fighting cancer. I just started seeing a physical therapist for a condition in my feet called peripheral neuropathy. This deterioration of nerve endings in the extremities is common in chemo patients. It is more severe and common in diabetics. For me, it is not painful, just a constant feeling of partial numbness on the bottom of my feet. It’s minor, like having sand in my shoes, but my niece Jessica warned me last year that it might be coming, and that in some cases it can get bad enough to interfere with the continuation of chemo. I mentioned to Roger that it is getting more pronounced, and he sent me to the PT, Christie Doyle.

Christie is the only person in our area who offers Anodyne therapy for neuropathy. In our first session she explained that infrared light would be aimed at my feet for 45 minutes, and this would stimulate the production of nitric oxide in my red blood cells, which would stimulate the rejuvenation of capillaries around the withered nerve endings and would ultimately allow the nerve endings to grow back. She said there was a fairly recent Nobel Prize awarded for the science upon which this new therapy is based. Guess who did the science? Bob Furchgott had not only worked out the nitric oxide connection, he also discovered that light (especially infrared) could stimulate NO production. In other words, I get Viagra for the toes. (The only difference is it’s not delivered by a pill. Clamping infrared lighting to the organ effected by Viagra is not a feasible option.) My neuropathy treatment is all thanks to the genius of a dear friend of the family, a pure scientist who doesn’t know yet he is part of my fantastic team.

Spleen Enlargement Finally Explained

Roger went to an oncology conference recently at which he discussed my case with several colleagues. He came home very excited, saying he now understands what caused my spleen enlargement. The liver must have had an inflammatory reaction to one of the chemo medicines, and this stimulated the spleen to overwork. Jessica adds, “As the liver was regenerating from the destruction of the tumors, the vascular flow was altered and it caused a back up in the spleen. This caused the spleen to enlarge. Because you were on the chemo for so long, the growth of the spleen and the inflammatory reaction in the liver persisted longer than doctors had seen in the past (when the chemo drugs weren't nearly as effective as they are today).”

As a non-oncologist, I find this explanation anticlimactic, even though Roger says he will present my case at a future oncology conference. I cannot appreciate what is unusual and surprising here, but I'll be proud of my contribution to knowledge as his specimen.

Travel

Pascale and I took a week-and-a-half trip to Chapel Hill, North Carolina and Miami. The primary purpose of the Chapel Hill visit was to see my old friends Judy and John Philpot. They had never met Pascale. I had told her about the Philpots, and vice versa, singing so many praises on both sides that they were wary to meet one another in the flesh. It turned out to be a wonderful visit – along with joining together in teasing me about my potentially intimidating habit of putting the people I love on pedestals a mile high, John and Judy got along famously with Pascale. We thoroughly enjoyed their hospitality in the colorful North Carolina springtime. It had been much too long since seeing these dear friends.

Before planning the trip to Chapel Hill, I remembered hearing the story from Terry and Penelope Connolly about the 90th birthday celebration of a person they knew. She was asked if she harbored any regrets in her long life. She had been beaten and jailed in the civil rights movement, but had no regrets about that. Her only regret was not having taken the time to visit friends in far places when her health and finances would have allowed. If your health allows, take my advice: go see your friends and family. It is worth any amount of money.

I had a guest lecture gig at North Carolina State University, hosted graciously by my friend Jim Wilson. It was a lot of fun. Grad students and faculty seemed to appreciate the ideas, and Jim snuck into the room one of those kindergarten teacher's stools so I did not have to stand the whole time. It is a great prop, because I could stand up on occasion to emphasize a point.
The trip to Miami was to attend an INFORMS conference on practical applications of operations research. I had been involved in planning the conference in earlier years, but canceled my participation in 2005 at the last minute because it occurred the week after my diagnosis. It was so touching to be welcomed there by the many friends who knew why I had to bail out suddenly a year earlier.

A Meeting by the River

In the last blog posting, I recommended a movie. This time I’ll tell you about a book I just read, A Meeting by the River by Christopher Isherwood (1904-1986), published in 1967. It is an epistolary novel, told entirely through the letters and diaries of two brothers, Oliver and Patrick. They grew up in England, where Patrick has become a high-powered businessman and family man. Oliver turned his back early on a rising career in banking to become a Red Cross worker in Africa and then an ascetic monk in India. He is living in a Hindu monastery by the Ganges, and is about to take the highest vows a monk can take. The brothers resume contact after a long hiatus.

Isherwood’s language is incredibly beautiful and flowing. He puts you completely inside the heads of the brothers. There is no narrator or uninvolved observer, yet you can taste and feel the atmosphere as if you are with them. Isherwood poses probing questions in a non-preachy way about what are the real differences and similarities between the brothers’ diverse lifestyles? What is hypocrisy? Patrick makes me want to wring his neck, as he tells different versions of the same events to different people. But then as Oliver expresses his deepest uncertainties about whether he is worthy of elevation in the Hindu world, one can’t help but wonder is he being honest with himself? Are Oliver’s doubts about who he really is similar to Patrick’s? Maybe the two brothers represent different sides of Isherwood. Maybe the complexity and unresolved issues of their relationship represent conflicts inside the writer’s own mind. This is not a book for people who need intricate plot, but wonderful for people who are fascinated by the human psyche and love great writing.

Till next time, with all my love,
Rick

ps. John Birge was the only person who commented on the April Fool's joke in the last blog post (Scott Simon's description of the I-Bod). John is a famous OR professor at the University of Chicago. He also deserves to be known as an excellent humor writer.

Photos

My Mom's cousin and friend Dr. Robert Furchgott receives the 1998 Nobel Prize in Medicine from the King of Sweden.

Cousin Bob at my parents' house. Click on his hands to see the Nobel gold medal.

Marjorie took this magical backlit photo of Claire and Skylar in March 2006. Are they the greatest, or what? The picture captures Claire's million-dollar smile perfectly.

Skylar contemplates the finer points of cheescake consumption on Claire's birthday.

John and Judy Philpot guide us through a beauthiful botanical garden in Chapel Hill.

Marjorie shells peas with the abuelas and an abuelo in a Peruvian hospice. I am so proud of her big heart.

Leslie Fine and Julie Ward, two good buddies from my sabbatical year at HP Labs, paid a sweet visit to our home and fixed a great gourmet lunch.

Abigail was recently signed by an acting/modeling agent. Agents work on commission so they don't take on new clients unless they think there is a chance of getting work. It is a very, very tough business. Abby is wise to keep her day job and stay in grad school. I remain her biggest fan and wish her luck.

Glory

2006-04-01T12:15:00.000-08:00

Unsupervised

Life is good. My brothers Andy and Bobby came out from the east coast to visit for three days. They came unaccompanied and Pascale was away. It was the first time the three of us were left together without adult supervision in over 40 years. We had a sweet time. Many laughs, memories and observations of our parents’ traits in each other. My daughter Claire and her daughter Skylar spent time with us and added so much to the joy of the visit.

The Chemo Cycle

Chemo is back on track. I get it every other week. There is a four-hour painless infusion session in Roger’s new office, with the same wonderful nurses and a great view of the green hills outside Monterey. Then I go home with a portable pump I wear on a belt for twenty-four hours. Pascale calls the pump the “chickaching” machine. Every three minutes, as it dishes out some healing juices, it makes a sound like a miniature slot machine. The chemo cocktail includes steroids, which fire me up with energy and give my face a healthy looking flush that fools everyone. I still have hair – go figure. The steroid high lasts about three days, followed by a few days with no energy and no appetite. This period brings on depression and, at its worst, fear about the future. After the down days, I gradually move back to somewhere between the two extremes.

Challenge in Colorado Springs

My former PhD student Steve Baker spent part of his vacation sitting with me during the last chemo session. It was a wonderful visit. Steve made Colonel in the Air Force, and he was given one of the most important and difficult jobs I can imagine. When sexual abuse scandals were revealed at the Air Force Academy a few years ago, Congress and the Air Force fired the Academy leadership and demanded that something be done. There needed to be much more than an accounting and remedy of the crimes, nothing short of a complete change of culture in the institution. Someone high up realized that the acculturation of the future officers starts with the basic training that cadets receive during the summer between high school and freshman year.

Steve was assigned to redesign and command basic training. Talk about pressure. One more piece of bad press, and who knows what would have happened? Steve studied the problem (like a good OR guy!) and he realized that the Air Force Academy did not have a sexual abuse problem, it had a power abuse problem. Further, he understood there is an inherent risk of this problem in the system. There are around 1300 18-year-old incoming freshman, whose moment-to-moment drilling and supervision are the responsibility of around 900 20-year-old upperclassmen. The training has to be extremely challenging and the kids who are not meant to be officers need to be identified, but that is a lot of power to put in the hands of 20-year-olds. Steve met this challenge successfully. The keys were extremely clear definition of what was allowed and not allowed by the drill instructors, swift, fair and consistent resolution of problems, and, of course, constant hands-on leadership.

Professors like to brag about their students almost as much as grandparents like to brag about their grandkids. My friends who teach at civilian universities have wonderful stories about students who become successful entrepreneurs or major corporate hotshots. This is one of the great privileges of the teaching profession. We get to see our students accomplish things that we never could have done ourselves, and they often give us far more credit than we deserve. I really admire what Steve has done, but I can assure you he came to my school with those leadership talents already in place.

Peru

Speaking of bragging rights, my 20-year-old daughter, Marjorie is in Lima, Peru, doing service work in hospices and rest homes for the poor. Her blog on MySpace is so full of passion and joy for the work. I am immeasurably proud of her.

All three of my girls make me happy and proud every day. Claire is a fantastic mom. Abby is getting more modeling and Spanish language TV gigs, while keeping up her day job and graduate studies in social work. Here is a picture Claire took of Abby.

Glory

And back to military leadership, Pascale and I recently watched the 1989 movie Glory, the true story of the first regiment of black soldiers in the Civil War. It is currently at the top of my list of all time favorite movies.

Mathew Broderick plays Robert Gould Shaw, the white 23-year-old Colonel who commands the regiment. Normally, it takes around 20 years of experience as an officer to make Colonel, but this is an exceptional situation. Shaw is the son of a prominent Boston abolitionist, who is a friend of Frederick Douglass and the Governor of Massachusetts. Who would believe a group of shoeless, illiterate runaway slaves can be formed into a legitimate fighting unit, so why should the Army waste a real colonel? Better to use a boy-colonel, especially one from a politically connected family that supports the idea of the black regiment. I only knew Broderick as a comedy actor and thought he would be swimming in water way over his head, considering the talent of the other stars, Morgan Freeman and Denzel Washington. Broderick turns out to be superb, expressing self-doubts (based on Shaw’s actual letters to his mother) as he grows quickly as a man and a leader.

The shoeless, illiterate soldiers are rich and diverse in character. Denzel Washington is angry, hot-headed, and impertinent, a man with no attachments. Morgan Freeman is wise and worthy of great respect. One “colored” soldier, played by Andre Braugher, is an educated free man who grew up with Shaw. He talks like a Boston Brahman, unable to understand the dialect the others use. He considers himself superior and, of course, has a lot to learn from his uneducated fellow soldiers. There is an Irish master sergeant, older and more experienced than Shaw, who is responsible for drilling the troops. He has a small part in the movie but is fascinating. This is a great picture, with so many life lessons for leaders, citizens, cancer patients, everyone.

Favorite Movies

One night I could not sleep and started a list of my favorite movies. Here are the dramas on the list so far:
Glory
To Kill a Mockingbird (Gregory Peck's Atticus Finch is my favorite hero)
Contact (I think of Jodie Foster as the Atticus Finch of science)
The Shawshank Redemption
Inherit the Wind (the 1960 version with Spencer Tracy)
Chariots of Fire
The Bridge on the River Kwai
Running on Empty
Local Hero
The Tunnel (Pascale and I may be the only people in North America to have seen this fascinating German thriller based on a true story)

Only a few comedies come to mind:
Parenthood
My Favorite Year
The Princess Bride (The Wizard of Oz of my kids' generation)

Last shot for this date: I heard about an amazing bio-tech breakthrough on National Public Radio this morning. Listen for yourself at
http://www.npr.org/templates/story/story.php?storyId=5317505

Keep Laughing

2006-03-08T12:07:00.000-08:00

Roger examined me yesterday and was very pleased with my condition. The platelet count is over 600,000! This is 10 times as many platelets in my blood as there were when my departed spleen was gobbling them up. Roger needs only 100,000 to feel safe about administering chemo, so we are resuming the healing juices next week. He also said the scar from my splenectomy looks very good and my recent ultrasound image looked fine. I have been totally off painkillers, of any kind, for four days.

A number of my friends have commented that they enjoy my attempts at humor on this blog. A great story comes from my friend John Milne in Vermont. He was laughing in front of his computer one night and there ensued a conversation with his wife that went something like this:

“What are you laughing so hard about, John?”
“This guy I know through INFORMS wrote a blog about his cancer struggles.”
“What? You’re laughing at that! Not even you are that insensitive.”
“Really, it’s funny. Come take a look.”

When they got to the part about the Chris-Elliot-Tom-Cruise doctor in Denver telling me what I was full of, she joined her husband in laughing out loud.

This is very gratifying. It might be harder to write things that make people laugh than it is to write operations research scholarly papers that colleagues (and especially students) appreciate. On the other hand, when you keep your eyes and ears open for funny things in real life, they happen, and all you have to do is tell it like it was. (Okay, maybe you should try to get away with a bit of Twainish exaggeration when you can.)

Thanks to all who have told me about their laughs. It is great medicine for me to know you are laughing rather than stressing. As always, I am filled with gratitude for your love and support.

Rick

Spleenless

2006-02-25T20:51:00.000-08:00

Dr. Mark Vierra performed my splenectomy on Valentine’s Day, as planned. I’m told it was a two-hour operation.

The results are excellent. My platelet count immediately roared upwards upon removal of that gluttonous spleen. Within a few days, the platelets were in a nice healthy range.

The pathology report was extremely encouraging. The spleen was four-to-six times larger than normal -- weighing in at 600 grams for an organ whose normal weight range is 100-150 grams. Although large, there was nothing sick about it. The spleen tissue was totally healthy, devoid of cancer or any other disease. It is a great comfort to know there aren’t any new enemies to fight!

The incision is large and it takes a hefty amount of narcotics to keep the pain down. I walk like someone twice my age, if you can picture a 110-year-old walking. I want to be careful to come down from the dope this time more carefully than I did after the colon surgery. That time I went cold turkey, not knowing any better, and it resulted in my shaking like a junkie (hmm, I wonder why) and suffering migraines. Managing narcotics is tricky business, even for people who are not likely to be prone to addiction.

At one point after the surgery, I thought I understood what caused the spleen to grow so large. After seeing Dr. Vierra for a follow-up, I found out that my attempted explanation was wrong. He says it remains a mystery.

I received so much loving attention while in the hospital from Pascale and many others. I was particularly touched by the students in my class, who sent us a beautiful Valentine's bouquet. Several friends and colleagues came to see me. Claire, Graham and Skylar's visits were very special. It was also a nice surprise to have Admiral Dick Wells, the President of my school, take the time to see me in the hospital.

My job now is to rest and recover from the wound of surgery. I trust that Roger will look at my eyes one day in the not too distant future and say it is time to resume chemotherapy. He will also look at my blood tests, vital signs, etc., but I think the really great doctors appropriately put a lot of faith in their intuition.

Cleo Joins the Family

A few weeks ago, Pascale decided she did not have enough caretaking to do with me around, so she adopted a cat from the Animal Rescue Center. All the pets coming from the rescue center are supposed to be neutered, so as to keep down the number of animals needing to be rescued in the future. Cleo is a cute calico. She came to us a bit skittish -- we did not know whether the neutering or her past history made her that way. We thought she had been spayed very recently because the fur on her belly had been shaved.

While I was in the hospital, Pascale discovered that Cleo was not actually spayed, as advertised. She went into heat. All the male cats of the neighborhood were gathering and Cleo was screaming for action. After two sleepless nights for Pascale, she finally relented and let Cleo out. The cat spent 48 hours straight fooling around under our house. We could not lure her back inside.

The Animal Rescue Center folks were quite embarrassed about all this. They covered the cost of getting Cleo’s procedure right this time. Here she is with a collar to keep her from licking her incision. By the way, when the vet performed the procedure, she discovered that Cleo had been pregnant for 30 days, definitely not what the Animal Rescue Center had in mind when they sold her to us.

Travail and Travel

2006-02-09T00:47:00.000-08:00

On Science and Engineering… and the Spleen that Devoured Cleveland

One of my favorite college professors, Dr. Jon Liebman, once explained the difference between science and engineering like this. Scientists, he said, ask questions of the form, “If I do X, what will happen?”, while engineers ask, “If I want Y to happen, what should I do?” This is one of those profound truths that can take decades to fully absorb, and perhaps I am still working on it. I am thinking about it because I realize a great doctor, like my oncologist Dr. Roger Shiffman, needs to have a lot of engineer in him.

An important distinction between scientists and engineers is the standard of verification to which they must hold their assertions. A scientist needs to have repeated, irrefutable evidence of exactly what happens when she does X before claiming to know the answer. In contrast, an engineer can not always wait for the incontrovertible truth to emerge before he makes an informed decision on the best way to try to make Y happen. Good engineers pay attention to what the scientists have learned and incorporate this knowledge into their thinking, but sometimes they need to try to make Y happen before the science is known.

So it is with Roger. No one seems to know why my spleen is so enormous. No one can scientifically describe exactly why it is soaking up platelets, thereby compromising my ability to accept chemotherapy. In fact, it is a mystery as to why only the platelets are severely deficient. Why isn’t the spleen gobbling up red and white blood cells as voraciously as it devours platelets? Roger can’t just sit around and wait for medical science to catch up with my needs. He needs to make an informed decision today on what to do about it. On his advice and with my niece Jessica’s concurrence, I have agreed to an operation to remove my spleen.

A Hot Date on Valentine’s Day

My surgery will be performed locally by Dr. Mark Vierra, who recently moved to Monterey from Stanford. He is reputedly a major hotshot, whom the Monterey medical community is thrilled to have snagged from the Stanford Medical School faculty. My interview with Dr. Vierra lasted an hour. For fifty-nine minutes, he spewed medical knowledge that gave me a great deal of confidence. Dr. Vierra’s most significant point was that, in the “surgical lore,” as he put it, large spleens are considered hard to remove, but he is very experienced with them and knows the “right tricks.” In the last minute of my appointment, his eyes softened and he said he was really sorry that I had to go through this. It was an understated but impressive display of compassion.

Dr. Vierra is very confident (not that I ever met a timid surgeon). He says that the incision will be larger and more uncomfortable than the one I got for the colon. So, I expect I will be doped up on narcotics again, which means some days of glorious lucidity and some days of down-right stupidity. When the spleen comes out, it will be studied by pathologists, but we may never know what caused it to grow so large. There does not appear to be another cancer causing it, because bone marrow and other tests have come up negative.

The splenectomy is scheduled for February 14th at the Community Hospital of the Monterey Peninsula (CHOMP). Just call me a guy who knows how to show a girl a good time. My colon surgery was on Pascale’s birthday last August and now I’ll be under the knife on Valentine’s Day. It will be a big knife, because the spleen is too large to remove laparoscopically. It won’t be fun, but this is what we think I need and it will enable me to resume chemotherapy the following month.

Half-Dose Therapy

Roger has been giving me half doses of chemotherapy and Erbitux for the last month. He reckons that to be the largest amount he can safely administer due to the reduced platelets. He acknowledges that there are no clinical tests of half doses, but the engineer in him sensibly reasons that some chemo is better than none. My most recent CT scan looks good: the liver tumors are down in size a bit.

Erbitux, the monoclonal antibody that caused rashes during the summer, has been true to form. It has effected my face and scalp with a condition resembling a combination of sunburn, poison oak, acne and cradle cap. Sounds charming, doesn’t it, but they say the more violence it does to the skin, the more harm it does to the cancer. Erbitux has to be used because the alternative, Avastin, can not be used within six weeks before or after surgery.

The spleen removal will be major surgery, especially since it is so big, but there are lots of people who have lived a long time without a spleen. My friend Hugh lost his in a boyhood accident when he fell out of a tree. It is not a very uncommon occurrence for car accident victims to puncture their spleen, have it removed and live happily ever after. Roger explained that the spleen is not useless like the appendix, because it cleans and strengthens the blood. The one requirement of being spleen-less is the need for regular vaccinations for meningitis, pneumonia and other potential enemies.

Family Visits

Roger granted me reprieves from treatment so that we could visit family. Over the winter break we had a wonderful time with Pascale’s family. Her daughter Nina has been studying in Paris for her junior year of college. We saw her and her boyfriend Ismael, who studies law in Mexico City. He is the cousin of Nina’s friend Carly who was also there from LA. We had fun running around the city with the kids, though I admit I did not have quite enough energy to keep up everyday. From Paris we went to the lovely Loire Valley town of Romorantin, where Pascale grew up and her family still lives. We stayed with her Dad and visited her brother Christian and his family. It was a great visit, with unbelievable hospitality and warmth. We had a sad visit to the grave of Pascale’s other brother, Serge, but that too was an important connection.

I made some egregious errors in French, but got forgiveness. The worst was when I offered a champagne toast thinking I was saying “to love,” when I actually said “to death.” After the immediate stunned reaction, there was a plenty of laughter when they realized I had confused two words, l’amour and la mort, which sound similar to my tin ear.

On the last two days in France, we stayed with our friends Alain and Patricia Patchong. They have a beautiful sweet baby boy named Elykia, whose name means “hope” in the language of Alain’s native country, Cameroon. Alain and Patricia were wonderful hosts, making us feel like royalty. We loved spending time with them and getting to know Elykia. They also welcomed Nina and Carly in their lovely home.

Recently, I attended an INFORMS Board Meeting in Baltimore and then went to New York to see my parents. I continued to withhold the truth about my health, hard as it is lie to them. My mother’s mind remains profoundly effected by the stroke she suffered in 2003. She knew I was her son but sometimes forgot which one. She still doesn’t get that I live in California, even though it has been 22 years, and she forgets that she and my Dad are living in the same house where they have lived for over sixty years. I asked my mother what year it is and she said, “1942?” My father thought it was 2002, an interesting illustration that his mind is also compromised but not as badly.

Stoned in Denver

The trip east had some trauma in the beginning. I was scheduled to change planes in Denver, with a long enough layover to plan a brunch at the airport with my friends (and backpacking buddies) Mark and Laurie Bullock, who live in Boulder. As the plane from Monterey approached Denver, I experienced a sudden burst of abdominal cramps so painful that I was barely able to stagger off the plane. A paramedic was called and he ended up shooting me up with a ton of narcotics and putting me on an ambulance to the University of Colorado Hospital. A gate agent kindly called Mark and Laurie and provided them with a pass so they could get through security and join me.

When I arrived at the Colorado emergency room, I was feeling the intense pain in occasional spurts. In between, the effect of the morphine was to give me the odd impression of experiencing the pain from a distance. The other effect of the dope was that I was quite stoned and uninhibited. I saw a man with a shaved head behind a computer screen and said “there’s Chris Elliot.” Evidently, he did not like the comparison to that not-so-handsome actor, so from then on I tried calling him Tom Cruise. He did not buy that one either. It turned out that Chris-Tom was the attending physician.

A younger resident examined me for a long time, hypothesizing and fortunately ruling out every horrible explanation he could think of. I had ultrasounds and x-rays. Finally, after a long while the attending physician came in and said, “given that you said I look like Chris Elliot and given that I have seen pictures of your insides, I can say with authority that you are full of poop.” Only he did not say “poop.” He said it with a big smile, and Mark and Laurie, not skipping a beat, said, “tell us something we don’t already know.” The joke was on me, but, believe me, it was a huge relief that the doctor was in a joking mood.

What had happened was that I had gotten on the plane with a fair amount of constipation and the associated gas had expanded from the altitude change, causing enormous internal pressure. That explanation made so much sense, I wondered why it doesn’t happen to people more often. The remedy was the obvious one, significant doses of industrial strength laxative. I spent the night at Mark and Laurie’s – a very pleasant visit with some dear friends who put up with me in a rather unpleasant condition. I even got to see their kids who have grown up quite a bit since they went backpacking in the Sierra with Marjorie and me (and Harlan Crowder) years ago. I took an early flight the next morning and was just a few hours late to the INFORMS Board meeting in Baltimore. The only real casualty of the trip, besides the abdominal pain and the insult to the Colorado doc’s vanity, was that I did not get to see my friend and former student Jack Keane, with whom I had planned dinner in Maryland the night before the Board meeting.

Keeping Busy

Sorry it has taken so long to update the blog. There have been good days that kept me busy and bad days that made it too difficult and depressing. There have been some wonderful visits – my niece Shana came from Boston, and my British cousin Jack’s daughter Holly came to Monterey during her school holiday. My brothers are coming in March, and so are Jessica and her family. It is always a pleasure to see family and friends. Everyone is so understanding – they are not expecting me to take them on long hikes or bike rides.

The main work activity keeping me busy is teaching a class for the first time since getting sick. My friend and colleague Javier Salmeron volunteered to help me with the class and he is doing a wonderful job. Unfortunately, during the surgery and recuperation, I will not be able to help him. Javier is so generous about all this support. He assuages my guilt by saying that he is learning valuable lessons about teaching when he sees me in front of the class. I think he really means it – that feels great.

As always, I continue to be so grateful to the family and friends who have given support of all kinds to Pascale and me. Thanks so much. I couldn’t get through this without you.

Photos

With Pascale's daughter Nina and her boyfriend Ismael in Paris, and with Pascale's father, Lucien, at Chenonceau, the beautiful Loire Valley chateau that has served as home to royalty and a World War I hospital.

A wonderful visit with our French friends Alain and Patricia Patchong and our new friend Elykia. He is a bright boy but does not have great taste in drumming teachers.

Home again. Claire and Graham let us babysit Skylar on New Years. And here is a picture of Pascale's son Alec. Now all our kids are on this blog.

Of Spleen and Spirit

2005-12-03T22:28:00.000-08:00

Spleen Enlargement Partially Explained

My spleen remains about one and a half times larger than it should be. The first suspected cause was a thrombosis (a.k.a. clot) in either the splenic vein, which comes out of the spleen, or the portal vein, which comes out of the liver. Over an hour of ultrasound testing revealed these veins to be flowing properly. The next test was an esophagusoscopy. While under sedation, a camera was sent down my esophagus and into my stomach. Clogged veins showed up in both the esophagus and the stomach.

This blockage causes back pressure from the liver to the spleen, which provides the immediate cause of the spleen enlargement. Now, the question is: what caused these blockages? We don’t know; they more commonly occur in people who have had liver disease much longer than I have. For now, the treatment is a blood pressure medication called Inderal. I am also getting injections every day of Neumega to build up platelets and make it safe to resume chemotherapy next week, along with occasional Neulast to boost the white cells. Liver function tests are pretty close to normal.

The procedure to send a TV studio down my gullet caused a bit of discomfort later that night. It may have just been that I had to fast till 3 p.m. and I am not strong enough to fast that long any more. Or it may have been a reaction to sedation or the procedure itself. I am not sure. The bad news was that I had to cancel a visit to the University of Texas, where my friend and colleague Dave Morton had invited me for a gig. It would have been nice to see Dave and other old friends, and it would have been my first time in Austin.

Spiritual Comfort

I continue to marvel at my good fortune to have so many people praying and pulling for me. Most major religions are represented in the prayers, including Baha’i, Buddhist, Catholic, Hindu, Jewish, Muslim and Protestant, along with the non-religious, who send their best wishes and visualizations in their own way. Thank you all!

I found this picture from July, 2004, about nine months B.C. (before cancer). Skylar was six weeks old. Our friends Alain and Patricia Patchong were visiting from Paris and Alain took the shot. I like this picture not only for the joy of holding my granddaughter tightly but for the vision it provides of what recovered health would look like.

This blog has pictures of my two older daughters, Abby and Claire. Here is one of the youngest Marjorie, a student at UC San Diego. How lucky can one guy get!

Sailing Through the Doldrums

2005-11-20T20:58:00.000-08:00

It is much easier to write to my blog when things are going well. I have not written lately because the last few months have seen some setbacks, though not all is bad. Since the surgery on August 2nd, I have had only two rounds of chemotherapy. I should have been getting it every two weeks since the 1st of September. On many, many days, I have shown up at the chemo center only to be sent home. I felt like a misbehaving boy sent home from school.

I have been deemed unfit for chemo for a variety of reasons. At times my blood cell counts have been too low. Sometimes it’s the red cells (which we need for energy), sometimes it’s the white cells (which help prevent and fight disease) and sometimes it’s the platelets (needed for healing). When the red or white cells are low, I am considered too weak. When the platelets are low, it is considered too dangerous to use Avastin, a key component of my new cocktail. Avastin can exacerbate the healing difficulty. When any of the cell counts are low, I usually get injections to boost them up, instead of chemo.

Another reason for getting “sent home from school” is that I have a minor residual effect from the surgery that has not cleared up. I will spare you the details, but suffice it to say that the best name I’ve come up with for this problem is “pain-in-the-butt-itis.” The docs would really like to see this thing healed before introducing Avastin.

A new complication emerged this week to add to the reasons why I am not getting chemo. A CT scan revealed that my spleen is enlarged. This one came out of the blue. Go figure. Roger, my oncologist, was a bit surprised by this one and should have a plan for what to do about it next week.

Overall, it has been depressing to be unable to take the healing juices that have done such a good job so far in reducing my cancer. It turns out the news is not all bad, though. The CT scan also showed that the liver tumors have shrunk significantly since the last CT scan, in spite of the fact that I’ve had so little chemo! Like I said, go figure. There is a lot of mystery and empiricism in this game. It must have been that the residual of old chemo treatments was still at work. Or maybe it’s the wonderful healing thoughts and prayers from all my family and friends. I am very fortunate.

No More Erbitux “Sunburn”

I am now officially off Erbitux, the monoclonal antibody that caused my face and the inside of my mouth to burn. At the worst times, people would gawk at my bright red, blistered and crusted face. The surprise side-effect of enduring all that nuisance is that now my skin is healthier than ever. Months of Erbitux sunburns resulted in layers of skin shedding, leaving my face smoother and easy to shave. I think this might be equivalent to the expensive cosmetic surgery known as dermal abrasion.

Another surprise side effect is that my hair is still on my head but it has lost its curls. Pascale bought me a comb. She had to show me how to use it, because I have never been able to pass one through my hair before.

CEA Update

My CEA has come all the way down to the thirties. That is great progress, but I also learned something disappointing. Bringing the CEA down even to zero doesn't necessarily mean you have beaten cancer. I met a fellow colon cancer patient whose CEA is down to 2.0, yet he remains very sick. Hearing this patient's story was quite a shock, because we were under the illusion that my CEA score told the whole story and it showed that we were winning. Having our illusions of progress shattered in this way took us for a loop.

San Francisco

In mid-November, Pascale and I went up to the city for a few days. We attended the San Francisco Opera production of Verde’s “The Force of Destiny.” We loved all four hours of it. The next three days, I attended the national meeting of the Institute for Operations Research and Management Science (INFORMS). It was supposed to be held in New Orleans, according to plans made four years ago, and had to be relocated in a hurry. It was amazing to see a meeting attended by 3500 people go so well when the venue was changed at the last moment. Kudos to Terry Cryan, the genius meetings planner of INFORMS.

I have been attending the INFORMS meetings for thirty years. It is a professional society with over 11,000 members, and now I am one of the dozen or so elected leaders. Since getting sick, several friends have been very generous in helping me get my job done. I was active the first two days of the conference and slept for most of the third. I saw friends from all over the world and got a huge lift from their friendship and support. Life is good.

This is Abigail, the oldest of my three daughters. I am very proud of the double life Abby leads. She's a dedicated bilingual social worker by day, and a talented actor, dancer and model by night.

Skylar administers kiss therapy to a grateful Grandpa. Click on her for a close-up view.

Surgery in Philadelphia

2005-09-09T09:37:00.000-07:00

Success and Surprise

The surgery trip to Philly went as planned. Pascale and I were greeted with great hospitality on July 26 by my niece Jessica, her husband Jeff and their boys, Oliver and Zachary. The next day we went to Abington Hospital and met Dr. Steve Fassler, the surgeon. Steve is a smart young doc, confident but not cocky, with a good sense of humor. He likes to be informal with patients, which is fine with me since that is similar to the way I teach. He is usually followed around by a minion of residents, some of whom look older than he is. He is obviously a star.

We spent a few days in New York visiting my parents before the surgery took place on Pascale’s birthday, August 2nd. I gave her a present with a note saying that I hoped her next birthday could be spent in a more fun place than a hospital waiting room.

The surgery took two and half hours. It accomplished the primary purpose of removing the tumor and diseased part of my colon. A pathologist examined the removed portion of the colon and pronounced its outside margins clean. This is an excellent result, meaning that it is unlikely that any cancer was left behind in the colon.

There was one big surprise. The secondary purpose of the surgery was to remove the stint that my gastroenterologist had inserted in April to prevent the tumor from obstructing the colon. But the stint was not there. Dr. Fassler had made an inch-long incision above the site of the tumor, through which he pulled out the resected portion of the colon and planned to pull out the stint. This along with a few little holes for the laparoscopy tools was all the violence he planned to inflict upon me. But with the stint missing in action, he had to look for it. So he made the incision large enough to insert his hand and search for the stint manually. When that produced no result, he gave me an unplanned colonoscopy. In the end, the stint was never found, so he concluded that it must have passed. (Ironically, my GI doc in Monterey had questioned the wisdom of the surgery, saying that the stint could stay in the colon for many years.) It turns out, therefore, that it was a very good thing to have done the surgery when we did, because, without a stint, there was still a danger of the tumor causing obstruction of the colon.

The Recovery Floor: It’s a Gas, Gas, Gas

When I woke up several hours later, I was on a floor dedicated to patients coming off anesthesia after major surgeries. I could not move at all in the beginning, due to the pain in my midsection and the consequent abdominal muscle spasms. After a few days in this ward, I noticed the most frequent question that the doctors and nurses asked the patients was, “did you pass any gas?” It turns out that the intestines are the last part of the body that wakes up and thaws out after anesthesia. If they are still anesthetized, then it is impossible to pass gas. So, like it or not, you can’t get out of that ward until you flatulate. The nurses do their best to make this a humorous subject. They are fond of saying that their floor is the only place where passing gas is not only socially acceptable but worthy of applause. A roommate of mine in the hospital said that it doesn't matter who you are, when you enter the Jumping-Jack-Flash-It's-A-Gas floor, you park your dignity at the door.

I did not get out till the fifth day. Near the end, there were some bad cramps in my belly. These were caused the trapping of four days of normal intestinal gas build up, but also the extra air that had been pumped into my abdomen to create more room for Dr. Fassler to perform the laparoscopic surgery.

On the third and fourth days in the hospital, I received physical therapy so as to learn how to walk and climb stairs again. The loss of use of the abdominal muscles makes a lot of things complicated. The PT was surprisingly effective, fortunately. I have to admit my fighting spirit was at a low at the start of the PT, but the pros in that department know how to encourage their patients effectively.

Convalescing

I left Abington Hospital with gratitude for their competent and compassionate care. I spent another week at Jessica’s recovering from the surgery. The nicest thing was all the visitors. My brothers came to see me, along with their wives and some of their kids. My good friend and colleague Terry Harrison came too. My first PhD student, Terry is now a famous professor at Penn State. He stopped off on his way to Newark airport, where he was catching a plane for a short teaching gig in Singapore.

Karla Hoffman, another good friend and colleague, came up by train from Washington, D.C. It was so kind of her to dedicate a day for the visit. When she first heard that I was sick, Karla suggested that I consider getting treatment at the National Cancer Institute and invited Pascale and me to stay at her and her husband's home for as long as necessary. What a class act she is!

Pascale’s dear friend Ray came down from New York to see us. We were truly honored by his gifts of time and samples from his vast music collection.

Each day I would try to walk a little further. At the beginning of the convalescence week, Jessica and Jeff’s driveway was the limit of my range. The improvement was slow but steady.

On August 13th, we flew back to Monterey. It was a smooth flight and we were happy to get home.

Morphine Dependence and Withdrawal

The doctors and nurses were quite liberal in dispensing narcotic painkillers after the surgery. In the hospital, they hooked me up to an ever-present morphine IV, which was activated whenever I hit a button. After release from the hospital, I was loaded up with a stash of morphine pills, which I took for three solid weeks. They provided a lot of comfort, but the bad news is they really are addictive. I was not sufficiently aware of this problem, and went off the dope cold turkey. That resulted in an extremely unpleasant reaction of migraine headaches, vomiting and shaking. It got pretty bad. Pascale was in Southern Cal, helping her daughter Nina embark on her junior year of college in Paris. My wonderful daughter Claire came over to help me and then Rob Dell took me to the hospital emergency room. It was a very busy night in the ER -- we got there at 11p.m., but I was not seen till 1a.m. The ER doctor explained that I was having a morphine withdrawal reaction, and gave me IV’s to re-hydrate along with non-narcotic painkillers. Rob stayed by my side at the ER through the night, finally taking me home at dawn. How lucky I am to have such good friends!

I wish I had known more about morphine addiction and had managed the withdrawal better. It took a full week before I finally felt the fuzziness gone from my head.

On August 30, Roger decided that I had recovered sufficiently from the surgery to resume chemotherapy for the liver cancer. The battle resumes.

The Long Haul

When my acute problem was in the intestines, it was very easy to understand. Everyone knows what a belly-ache feels like. But having a sick liver is an abstraction. What does a liver-ache feel like? With the exception of a few occasions when my enlarged liver put pressure on the surrounding area, making it uncomfortable to lie on my side or take deep breaths, I’ve had no physical awareness of my liver. The doc even had to show me where it is.

So here I am with an incurable disease of an abstract organ, whose only symptom is constant fatigue. Unfortunately, all the doctors say that by today’s medicine, there is no cure. The long-term goal is to keep the cancer from growing and spreading with chemotherapy, and to hope that a cure will emerge in the interim. There is much reason for hope. There has been so much improvement in cancer therapy in the last few years. For example, chemo treatments are far less traumatic now than they used to be. For an even more important example, Roger says that my life expectancy would have been far shorter using the medicine of just two years ago than it is now.

I had been envisioning a day when I would walk out of the oncology center pronounced cured, like Lance Armstrong when he left Indiana. On my last day, I would bring a cake to Roger’s office with a big thank you to him and his staff on it, each person’s name in colorful icing. This may yet happen, but no one in the cancer community is promising it.

It is time to focus less on the day-to-day minor discomforts and more on adjusting psychologically to the big picture. I think the anti-depressant is helping. It is harder for me to see the effect but others seem to notice. The most important thing is to embrace each day as a gift and make the best of it. My family has been wonderful. Pascale has cut down her extremely busy schedule to make more time for us. We have even been playing tennis. We go out and hit for about 20-30 minutes. She runs hard, hitting each ball on the first bounce. I might hit a second or third bounce or whenever I get around to it. I may not be hustling like Andre Agassi, but we are hitting good balls and having a lot of fun.

Kiss Therapy

My three daughters have been visiting and calling often. Claire’s baby, my 15-month-old granddaughter Skylar, is getting very comfortable with me now. Since I shaved my beard a few weeks ago, she has been giving me lots of kisses and hugs. It doesn’t get any better than that! I surely would not be getting as many Skylar kisses if I were working as hard as I used to, so that’s one gift of cancer. Another gift is the frequent reminders I get of my good fortune to have so many close friends. Thank you.

A Parting Reminder

There has been one very good consequence of my being so open about this cancer battle. A dozen or so friends have told me that they got colonoscopies after learning about my condition. In at least one case, polyps were discovered and removed, averting serious illness. If you are of a certain age and have not had this only mildly annoying preventative measure, please talk with your doctor about it. It could have saved me a lot of trouble.

Photos

Here I am with my brothers Bobby and Andy, and with Jessica and her sons. It was nice of Oliver to let me hold his light-sabre.

Here is Dr. Steve Fassler. He may look young, but he has already done 500 laparoscopic colon surgeries.

Speaking of Skylar, here she is with her parents, Claire and Graham Nash.

Cancer Battle Update -- CEA Dives; Photos of my Oncology Team

2005-07-23T20:51:00.000-07:00

Hawaii Therapy

Thanks to the many friends who have asked for blog updates. Sorry it has taken so long to post this one. The cancer battle news continues to be good – my oncologist Dr. Roger Shiffman is still very pleased with the progress. My CEA in mid-June was down to 380. In mid-July, it was 54.6! This measure of cancer presence was nearly 3000 when treatment began in April.

Pascale and I recently returned from some Roger-approved Hawaii therapy. We spent the first week honeymooning in our favorite place on the planet, the north shore of Kauai. I had been dosed up with chemo just before we left, so I was very tired and the facial rash limited my swimming in the ocean, but just breathing the air and experiencing the light and scent of that beautiful place was a treat.

Our second week of the trip was spent in Honolulu, and by then the chemo wore off. I attended the INFORMS Board Meeting and the IFORS international Operations Research conference. I had been feeling disconnected from my profession for the last three months. It was great to reconnect with friends from around the world, and to hear new research results. I had committed to giving a talk at the conference long before I got sick. Normally, I over-prepare for these talks, with numerous slides. This time, I lacked the energy to do that and just gave an old-fashioned talk – leaning on a lectern, telling a story. The audience seemed to like the retro style.

A great benefit of the conference being in Honolulu was that we got to see Pascale’s son Alec. Since getting out of the military, he has been living there. He is an entrepreneur, managing one coffee shop and owning another. It was fun to see him in his element and admire his focus on making his business a success. Alec came over to the OR conference and met a number of my friends. His reaction was wonderful – he said he never met a group of people before who enjoyed their work so much. He has a lot of math talent, and expressed an interest in learning more about OR.

Depression

It is hard to admit, but the truth is that being a cancer patient can get a bit depressing. Thankfully, the really scary times are behind me – I know I am going to beat this thing. But it gets old when you have been physically and mentally active all your life and now you have low energy day after day. It is especially hard in the summertime, missing out on the activities I love: hiking, biking, swimming, backpacking, kayaking, and so on. I lack the stamina even to read books or work hard on an OR problem.

I resisted at first but started taking an anti-depressant (Paxil) suggested by Roger. A conversation with Nancy Brown helped me make this decision. I said that the circumstances of my current situation could not be changed by a “happy pill.” She said that’s true but the pills can help improve the way you feel about the circumstances. This is an experiment still in progress. It takes time for the anti-depressant to have an effect.

The Next Step: Surgery in Philadelphia

Pascale and I are traveling soon to Philadelphia, where I will have the colon tumor and stint surgically removed. Why surgery now? Why Philly?

If my cancer had not spread from the colon to the liver, then there would have been a surgery at the outset to remove the colon tumor. But that would have been ill-advised because it would have left the liver tumors unattended and allowed them to grow. So we started with chemo to zap the tumors in both organs. (The body cannot take chemo while undergoing and recovering from surgery.) Now the liver tumors have receded enough so they can be ignored for a few weeks, while we concentrate on totally curing the colon.

The colon surgery is called a resection. They cut out the bad part and reattach the loose ends like a garden hose. Apparently, we have lots more colon than we need and it stretches easily, so this is not too tricky. The tricky part is that in the last few years, led by the Mayo Clinic, a few colon surgeons have learned how to do this surgery laproscopically. That means through the belly-button. The advantage is that the recovery period is much shorter than if the surgeon cuts through the abdominal muscles in the old-fashioned way. Quick recovery is important, not just for comfort’s sake, but so we can get back to killing cancer cells in the liver as soon as possible.

My brilliant niece, Dr. Jessica Rosenthal Berman, practices oncology in Abington, a suburb of Philadelphia. She has a surgical colleague and friend at Abington Hospital, Dr. Steve Fassler, whose practice is limited to colon surgeries and who has already done 500 of these surgeries through the navel. Jessica says he is a master, that when she sends her cancer patients to Steve, they are ready to resume chemo in about two weeks. Other than the Mayo Clinic, I don’t know where else to go for such an experienced and highly recommended surgeon. (My good friend Terry Cryan says that there has been a trend in the last ten years for top docs like Steve to move from the famous teaching hospitals to private hospitals in nice places to live.)

So Pascale and I will spend three weeks on the east coast. We will have a visit with my parents before the surgery. (I still have some hair on my head, so I think it will be possible to conceal the illness from them. My beard is quite full now, so that will create some distraction.) It will be great to see them, and my brothers and other family.

Steve says I will probably spend 2-4 days in the hospital and then will need about two weeks to recover before traveling back to California. Jessica has so kindly offered to put us up at her and her husband Jeff’s house for the recovery period. She also invites any of our east coast friends to drop by.

Despite the inconvenience of traveling so far for surgery, I am very pleased that I will be getting top quality care, and especially, having Jessica available to keep her eye on everything.

That’s the news for now. Thanks again to all the dear friends and family who have been supporting me in so many ways.

With my amigos, Wilson Price and Harlan Crowder in May.

Here is Roger, at work on designing my chemo cocktail.

He treats the whole patient: body, mind and spirit, not to mention caring about the family.

Here is what happens when I get fired up on Erbitux. Looks like a pretty bad sunburn, and it feels worse. Fact is I have been completely avoiding exposure to the sun. The good news is that when the chemo drugs cause a nasty reaction on the skin, it is very likely that they are also causing an especially nasty reaction on the cancer cells. I'll take that deal. Fortunately, the skin reaction wears off in a week or two.

Some of Roger's staff: Lindy, Jessica, James, Vivian and Beverla. Vivian is fondling the infusion machine that I spend a lot of time hooked up to. These people are very bright and caring. They do a great job for all the patients.

Healing agents kick cancer’s butt; Pascale and Rick's wedding

2005-05-18T19:19:00.000-07:00

Situation Report

It's almost a month since the last dispatch from the cancer trenches. Quite a month! I am in week 5 of chemotherapy, actually sitting in a comfortable recliner in an infusion room at Dr. Roger Shiffman's oncology office, receiving healing juices from two pumps connected to my portocath as I type. There is no pain whatsoever while this is happening.

At the end of week 3, Roger took some readings on my blood. He was ecstatic with the lab results. We are convinced that the healing agents are kicking the cancer's butt! Every number on the lab report moved in the right direction. There is an approximate measure of cancer presence called CEA (carcinoembryonic antigen) that went from 2698 to 1078 in three weeks. I love that steep descent, but it is still a long way from a healthy CEA, which should be under 3. CEA is not a perfect measure, but I take great comfort from the early results and, especially, from Roger's enthusiastic reaction to them. I have tremendous faith in and admiration for the leader of my medical team.

As for side effects, there has been only one, a rash caused by Erbitux, one of the healing agents in Roger's magic cocktail. (The other agents, if you are interested, are Oxaliplatin, Leucovorin, and 5Fu.) The rash is on my face, chest and back. The face was very uncomfortable for a about two weeks. It felt and looked as if I had fallen asleep in the Hawaii sun for hours on end. I tried many creams and salves. The best was when Pascale cut open a fresh aloe leaf and lovingly smeared my face with the wet, gooey gel it exudes. It was as nice as a dip in an isolated Sierra lake on a summer backpacking trip. I have not attempted to shave since the skin is so sensitive. Roger gave me last week off from Erbitux and he reduced it by 25% from today's chemo cocktail, so the pain has gone away. Besides the rash, the only other thing I have had to whine about is abdominal cramps. They are related to constipation which was caused by the colon tumor and the stint inserted by the gastroenterologist to suppress it. For a long while the cramps were quite painful, calling for morphine a couple of times. Thankfully, the log-jam was broken last weekend, regularity is here, and that is a great mood-enhancer. No cramps lately! And my appetite is hearty. Keep fingers crossed for this to last.

At this point I am beyond the embarrassment of recognizing how important the regularity of digestive functioning is to my overall well-being. I beg for forgiveness from any of my elders with whom I may have been a little impatient when they referred to such indelicacies in the past. Jerry and Nancy Brown pointed out the perfect appropriateness of the dare in T.S. Eliot's The Love Song of J.. Alfred Prufrock, who says:

     "I grow old....I grow old.......
     I shall wear the bottoms of my trousers rolled.
     Shall I part my hair behind? Do I dare to eat a peach?
     I shall wear white flannel trousers, and walk upon the beach."

With only bellyaches and sunburn to whine about while engaged in mortal combat with cancer, I am pretty darn lucky. Of course, that doesn't totally stop me from whining, and Pascale has been patient with me beyond belief. Every toss and turn or whimper and moan keeps her up at night. I worry that she is not getting enough sleep. I kept her up a few nights last month with a 9-hour and a 14-hour bout of hiccups. Acupuncture did not work, but the mix of Reglan and Ativan finally did the trick.

One of the most difficult parts of all this is talking to my parents. My older brothers Andy and Bobby and I agree not to tell them about my illness. Our mother (85) sustained a severe stroke in November 2003, which smote her mind from totally sharp to incapable of differentiating the here-and-now from random thoughts that cross her mind. Our dad's mind is fading too at 88, but it is going at a slower rate. They are very well cared for round the clock in the home they moved into as bride and groom, and they're as happy as we could hope for under the circumstances. I call them often, though I hate lying through my teeth about my health to the people who have known me the longest and love me the most.

Wedded Bliss

The number one highlight of the month is that Pascale and I got married on May 3rd. We did it on Del Monte Beach, near our house. Rosanna Wilson-Farrow, was visiting from Mendocino for a long weekend, doing lots of masterful cooking to help me regain the 15 pounds I have lost. Rosanna is the first very close friend Pascale made after moving from France at the age of almost 19. Pascale and I have known for a long time that we wanted to get married and had put if off for a variety of practical reasons. But the cancer battle brings us even closer and makes us even more deeply committed, so we decided to delay no longer.

Here in Monterey, the scenery and ambiance are so beautiful that many lovers get the spontaneous urge to marry. So there is a cottage industry of nonreligious "ministers," who are available at the drop of a hat to perform the ceremony. We called Colette at 10:00 a.m. and she agreed to meet us at the beach at 2:00. For a little extra, she said she would bring all the documents and save us the trip to the Salinas courthouse to get the marriage license.

Pascale had Rosanna as a witness, so I decided I needed one too. I called my good friend and colleague Rob Dell at noon and asked what he was doing at 2. He said he was meeting with a thesis student. I know, and Rob knows I know, what a conscientious professor he is, how he would never miss an appointment with a student. But I asked him if he could see the student another time, and he said "yes" without hesitating. I said, "great, then please come to the house at 1:45 for a secret mission." My buddy said, "sure" and asked no questions. When Rob arrived, he found me in my suit (a bit baggy with the weight loss) and he saw Pascale and Rosanna putting the finishing touches on their beautiful outfits. There were corsage and boutonnière to be pinned. The amazing thing is that Rob was not surprised. He said that the unprecedented request to break an appointment with a student and the happiness in my voice enabled him to guess exactly what we were doing. Rob's smart that way, actually in lots of ways. I am truly blessed with so many great friends. I am sure that several others would have been just as willing and able to be my witness.

So the giddy wedding party of four went down to the beach. Colette was good to her word and met us there. She read a traditional script, we exchanged rings, recited vows, said "I do's," and we all did a lot of laughing and hugging. For a split second, I thought I was in a play, because Colette was saying these beautiful words even though she doesn't know us. That feeling quickly evaporated as I gazed at Pascale's radiant smile, and felt Rob and Rosanna's loving energy.

One funny thing: looking at the pictures later, I noticed that Colette never loosened the grip on her cell phone throughout the ceremony. Hey, you never know when the next couple will get the urge and she's got lots of competition. Actually, Collette was competent and warm-hearted and, fortunately, her phone didn't ring. She took good pictures of the four of us (Rosanna took most of the pictures) and gave us a great laugh when she made us swear we're over 18 years old.

On the way back from the wedding site, we ran into two young surfers. I called out to them, "We're just married!" and they had the audacity to ignore me. Pascale is so beautiful and charismatic that she is impossible to ignore. She said, "did you hear what my husband said?" and soon the boys were sweetly offering congratulations and posing for pictures with us.

Rosanna wrote a beautiful note when she returned to Mendocino: "I am still high from being there with you on your magical, amazing, spontaneous wedding day. It was such an honor -- thank you for the wild and wonderful ride! The way it all unfolded was like a dream. Although I tend to be a skeptic about divine intervention in our little human lives, God or the Universe really seemed to pay close attention that day. Perhaps there are favored moments chosen to help us create perfection down here. It was as if some force took over, rolled out an invisible carpet for us to ride, and guided us minute by minute. Everything unfolded in the most creative, delightful way. I'm not sure how it all happened so smoothly. No amount of planning could have made it any better or more beautiful than it turned out. The experience was a high point in my life."

Rob enjoyed it too. He is an operations researcher like me, so you can't expect poetry to flow out of us like Rosanna, but Rob had feelings much like hers. The wedding was a wonderful distraction from cancer, and a great affirmation to remind the cancer that we are going to beat the bloody daylights out of it.

Click here for pictures of our wedding.

I Get by with a Lotta Help from My Friends

Another wonderful affirmation has been the generosity of friends who bring food and, most importantly, take times out of their busy lives to call, write or visit. My three daughters have been fantastic about paying attention to me. My very kind ex-wife Diana brings chicken soup regularly. It is my grandmother's recipe, to which she has miraculously added even more good taste. On days when my appetite was totally suppressed by abdominal cramps, it was a godsend. I can imagine my grandmother smiling down from heaven as I slurped it up. Other dear friends bring wonderful food too. Roberto Szechtman brought me delicious empinadas, the traditional dish that Argentines bring to the sick. Wilson Price, who is here in Monterey as a visiting professor from Quebec City, and his lovely wife Hélène have been so attentive, as have been the wonderful Nancys. Nancy Dell got a stack of cookbooks for cancer patients from the library and assigned me the task of checking off the most appealing recipes. She regularly drops off goodies. Another great Nancy, Pascale's dear friend in Ojai, sends care packages and calls regularly, as do Pascale's sweet daughter Nina and so many friends from Pascale's pre-Monterey life.

Nancy and Jerry Brown cooked an amazing barbeque as part of our festival honoring Al Washburn's retirement, and sent me home with tasty (and fattening) leftovers. Nancy even brought a delicious lunch today to Roger's office that I enjoyed during chemo. The WashburnFest was a huge success for Al, his family, his research colleagues who flew in from far away, and especially for the OR department, which is so proud of his accomplishments. I am very pleased that I was able to lend a hand in organizing the festival before I got sick.

I hope I do not forget to mention others who have brought me nourishing meals. Pascale plays on the Naval Postgraduate School tennis team, and her teammates volunteered to bring dishes over while Pascale is traveling. She is in New York now, attending a workshop essential for her education as a therapist. Had she not gone, it would have significantly set her back in the third year of her four-year training. It was very hard for her to leave, but the Nancys and the tennis team gave her so much assurance that they would keep a kind eye on me. I miss her very much but am glad she is pursuing her dream and getting some well-earned time off from 24-hour nursing. My dear friend Michael Farmer, whom I met 28 years ago when he was an undergraduate and I was a hip young prof at Tennessee, has moved out of his home in San Francisco and into our house during part of Pascale's absence. He is doing a great job of providing tons of distraction and humor. Michael even allowed me the fun of applying some OR decision analysis to help him with a business problem.

Karla and Ariela, friends and OR colleagues in the DC area were so kind as to offer accommodations in their homes for Pascale and me, if I chose to receive treatment at the National Institutes of Health. Their generosity touches me deeply. A new friend Ben in Boston sent healing books and Linda in Ithaca signed me up for the fruit-of-the-month club.

The Board of the national society for OR's, INFORMS, on which I serve as a vice-president held a meeting in Palm Springs in April. I had spent a lot of time helping to organize the meeting and planned to give a talk there, but had to cancel at the last moment. My colleague Jerry Brown filled in for me on the talk, and the whole Board, led by President Dick Larson, sent a wonderful poster showing them all "pulling for me."

My oldest friend, Jeff Wolin, came for a few days from Indiana, where he is a professor of photography at IU. Although he is way too modest to tell you, Jeff is an extremely successful artist, with several books published and galleries representing him in Chicago, New York and Paris. I am really proud of him, and in fact take a special personal pleasure in his success. Not long before he dropped out of medical school, I happened to show Jeff how to develop and print black and white photos, a hobby I had just learned at the time.

Jeff combined the visit with work on a project he is doing on Vietnam veterans. He is creating a record of the experiences of several veterans, similar to a project he did earlier on Holocaust survivors. For each vet, he creates a three-part installation including a snapshot they provide from wartime, an extract of an interview he conducts, and a portrait he takes with his large-format camera. The veterans represent the full spectrum of outlooks, from total patriot to anti-war zealot. There is no prevailing point of view. I arranged for Jeff to meet and photograph my colleague Gordon Nakagawa. Gordon is a much admired and beloved retired Navy Captain. When his plane was shot down, he was captured by the North Vietnamese and made prisoner in the infamous Hanoi Hilton. Gordon's heroic story is ever-more poignant, because he was imprisoned once before, in a WWII interment camp for Japanese-Americans, as a boy. He went on to serve his country nobly, as did many members of the earlier generation of Japanese-Americans who volunteered to fight in the US Army, going from the interment camps to become some of the bravest soldiers who helped defeat the Nazis.

One night my cramps were particularly bad and Jeff sat in a chair beside my bed. He showed me all the work to date on the Vietnam project with so much passion for telling his subjects' stories. The intimacy of a bedside conversation and his sharing what is important to him brought back the warm memory of spending time together as 11-year-olds.

Dave Morton flew in from Austin to attend his advisor George Dantzig's funeral in Palo Alto, and took an afternoon to come down to Monterey afterwards. I really enjoyed the visit, especially the cute stories he told about his 7-year-old daughter. She attended a high-power lecture in which he used the mathematical term "sup" several times. Her reaction was that it was getting close to lunch and soup sounded like a great idea.

Judy Philpot called from North Carolina yesterday. She was overjoyed with news of the wedding and is convinced she will totally love Pascale when they meet. Judy also dazzled me with incredible stories about the lives and adventures of her and John's amazing children and grandchildren.

There are many others to thank for taking time. My great friend and backpacking buddy Harlan Crowder came down from Silicon Valley yesterday. It was a spontaneous gift of his time when I asked for advice on setting up this blog.

I cannot tell you how much I appreciate all the love and support I receive, whether in the form of get-well cards, emails, food, phone calls, visits or just visualizations and prayers in your own private thoughts. When we beat this cancer, it will be everyone's victory to share. I love you. Rick

Click here for our wedding pictures.

First dispatch from the cancer trenches

2005-04-21T12:21:00.000-07:00

I have been so lucky to hear from so many who have showered kindness and concern. It is difficult to give everyone timely news in a personal way. I love to receive calls -- can't promise to take every call, but I am trying to get back to as many as I can.

A lot has happened in an amazingly short time. It was not much more than one week from the time I complained to my doctor about low energy to the time she had collected the right clues for the colon cancer with liver matastisis to be identified. And only another week or so went by till I got my first chemotherapy treatment yesterday. It was a long session in the oncologist's office. Pascale and I got there at 8 and did not leave till about 5:30. The first dosing is larger and has to be given slower, so as to be on the alert for reactions, which fortunately were negligible. I feel very good. The nurses were great in taking every step to minimize the side effects. In fact, that evening, shortly after we returned, Pascale and I enjoyed a short walk on the beach and an excellent movie (In My Country with Samuel Jackson and Juliette Binoche, concerning the Truth and Reconciliation Hearings in South Africa).

Speaking of Pascale, I should say that no one should ever have to endure an ordeal like this without the comforting support and love she has provided without fail. My illness was such a surprise to us both, but imagine what it must be like for her, only a few months after she moved to Monterey for us to start our life together. For those who don't know, we met on September 12, 2001, through a sequence of unexpected events, the most important being the tragic attack on 9/11.

Next week I will be getting iron thrown into the cocktail of healing agents and vitamins that I am getting. That should help with energy. Overall, I am confident that I have a great team of local doctors, led by oncologist Dr. Roger Shiffman. Roger has sought and received consultation about my case from professors at USC, Stanford and UCSF, and from my niece who is a brilliant young oncologist in Philadelphia. Roger is a master at treating the whole patient. I feel very fortunate to be in his care. The surgeon, Dr. Kajikuri, who implanted the portocath in my chest on Saturday did a perfect job, without any bruising. The portocath creates a simple painless valve for extraction of blood samples and insertion of medications. No more vein sticks!

CHOMP, as we call our local hospital, is a very richly endowed private hospital with great docs, great facilities and abundant services. One of the services is a cancer wellness class. One of the key points they teach is to visualize. Visualize the healthy energtic Rick I know. Visualize the healing agents soaring through my body, seeking out cancer cells and obliterating them. (It is hard to call it "chemo" when you put such a positive spin on it!) The teacher also says that when people ask what they can do to help, ask them to do the same visualizations of the healthy Rick and the soaring healing agents. If you are not adverse to this kind of California new-age-y stuff, please join me in visualizing. We are going to beat this thing! Thank you again for all your kindness. I wish you all the best.