The New BattlefrontIn 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 HellWe 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.
