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 In late November 2006, we discovered that the nasty critters in my liver had rejoiced and multiplied as the chemo was withdrawn.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.
