Scaring the kids (or, still more matters culinary)

Another thing that a doctor said to me just after I got cancer that seemed a little obvious at the time, but took on more meaning later was: "You know, you didn't do anything to get this." 

I thought of that yesterday when I heard about a new TV commercial from Physicians Committee for Responsible Medicine attacking hot dogs. The lede of the AP story explains: 

A new TV commercial shows kids eating hot dogs in a school cafeteria and one little boy’s haunting lament: “I was dumbfounded when the doctor told me I have late-stage colon cancer.”

Nice! 

The little boy, as well as two others making testimonials in the ad, do not have cancer. (The use of "dumbfounded" by a child was a clue as to the scripted nature of the thing.) I had initially thought the ad was from some kind of vegan group -- the PETA milk-causes-acne crowd -- but I guess that isn't the case. Still, I'm haunted by the thought: What if the vegans are right, and the rest of us will fade away, leaving the world to slender, tight-lipped folks publishing abrasive web sites and walking around in soy shoes... 

Weird

I'm writing this with my ear half-cocked for the school bus. B. is riding home on the bus for only the second time ever, and I am sitting here waiting to usher him inside after the first day of second grade. I am armed with cookies and cold milk. It's a little surreal, but very sweet. At least I'm getting something out of sarcoma...

Teddy

When I became depressed last summer after finishing my initial blitzkrieg of chemotherapy and radiation, I went to see a psychiatrist who spends a lot of time working with cancer patients. 

He said something to me that seemed obvious then, but has grown more meaningful with time. I can't do it justice, but the pep talk went something like this: "Cancer isn't all you're about. It needs to be attended to, but it can't become everything you are. You are still the person you were before you got sick, and you need to honor that person by making room for your old passions and pleasures -- and finding new ones."

(Obviously, I've been crackerjack on that advice -- writing a cancer blog under the pseudonym Sick Guy. But no, no -- I am honoring who I was, who I am. I've always had a dark sense of humor.)

I was reminded of the doctor's words when I saw Teddy Kennedy speak at the Democratic convention. I was moved more by his presence than what he said. The contingency of it -- no announcement beforehand lest something go wrong and lead to a cancellation -- echoed the uncertainty of my own cancer experience. More echoes: That hair, thinned but still unmistakable, the stool behind the podium, the physical support of his wife, his energetic defiance. 

Kennedy didn't go to the convention because he wanted to hear a house go wild one last time, though I'm sure that was nice. He went because he is passionate about his party's candidate, and because he wants to do one more big thing before he dies. He's doing what all of us dealing with this illness are trying to do, put one foot in front of the other, however laboriously, for the people and causes we love. Even if, especially if, it costs us. My great work is with my family. His is... broader. 

The political blogger Ezra Klein elaborates:

In the last few weeks, I've spoken to a couple Kennedy aides who all told me the same thing: Health care. Kennedy has told them that this is his final crusade. Aides who work in other legislative areas have been told that their issue areas are going to almost dissolve, and they'll become something like support staff for the health team. Kennedy means to pass a bill. He means to muster the full force of his legislative talents, his sprawling staff, his longstanding relationships, and even the poignancy of his condition. It will be his legacy. It is his dream.

Times to me: 'Get off the couch!'

I wasn't going to comment on the New York Times cancer and exercise story (I don't want to be a NYT clipping service), but I kept thinking about the article hours after reading it, specifically this part:

Other studies indicate that moderate exercise has additional benefits like strengthened immune function and lower rates of recurrence. Studies at Dana-Farber found that nonmetastatic colon cancer patients who routinely exercised had a 50 percent lower mortality rate during the study period than their inactive peers, regardless of how active they were before the diagnoses.

I wondered how they figured that out, so I read a little more about the 2006 study. It made sense to me that having a more serious presentation of colon cancer would make you more likely to be sedentary after treatment and also more likely to die from a recurrence or other cause. I wanted to see how they adjusted for that. The study's authors say they can't completely eliminate that possibility, but they picked patients at the same stage of the disease who had similar surgery and chemotherapy, adjusted the data for other risk factors of death, and eliminated from the study population people who died within six months of having their physical activity assessed. That said, the study doesn't have much to say about causation or the mechanism by which exercise might lower recurrence risk. 

Nonetheless, an editorial published along with the study used these results and others relating to breast cancer to tell patients that it's "time to get moving." If you're tempted, exercise seems to provide measurable benefits at about 9 MET hours  a week (don't ask; it's the equivalent of four or five 30-minute brisk walks) after breast cancer and 18 weekly MET hours (four or five 30-minute jogs) after colon cancer. Shockingly, there's no epithelioid sarcoma data. I don't know if working out that much is possible for me, but I'm at least going to take a walk this afternoon...

Deforolimus trial

I finally got to take a look at the informed consent documents for Ariad’s phase III trial of oral deforolimus. The trial is intended to see if the drug improves progression free survival for patients who have had successful chemotherapy for advanced sarcoma. 

It is a double-blind, placebo-controlled study: Participants are assigned randomly into a placebo group or a deforolimus group, and neither they nor their doctors know which group they are part of. The odds of getting the placebo are 50/50, a coin-flip -- a huge negative for electing to take part in this particular study, obviously. Ariad’s thinking is that the standard of care after completing sarcoma chemotherapy successfully is watchful waiting; therefore, study participants randomized into the placebo arm of the study are receiving standard treatment.

Here are some notes about how the study works and the side effects of the drug that I gleaned from the documents:

Patients must have completed at least four cycles of chemotherapy without any worsening of the cancer; 1, 2 or 3 previous treatments (chemo completed 3-8 weeks before being randomized into the study)

Randomized in either placebo arm or treatment arm; double-blind

14 days of pre-study screening; includes review of scans (process may take up to 3 weeks, I think; little confused by this part)

Study involves bloods every month; scans every 8 weeks

Kicked out of study if disease progresses or toxicity becomes unacceptable

No crossover from placebo arm to treatment arm

Ongoing monitoring

Greater than 20 percent side effects:

weakness and fatigue
appetite loss
mouth sores or sore throat
rash
low red blood cell counts
diarrhea
low white blood cell counts
nausea
increased blood fat levels
vomiting
low platelet counts
taste changes

Less frequent side effects:

headache
fever
weight loss
tingling sensation in the hands or feet
hair loss
high blood sugar levels
constipation
increased liver enzyme levels
low blood levels of sodium, potassium and phosphate
nail discoloration and brittleness

There are also some dire less than 2 percent and less than 1 percent side effects.

More matters culinary

I'm tired of the bacon fetish currently so common among people interested in food. I'm waiting for round white eggplants and tender shell beans to come into vogue. But bacon, like the even-more-trendy cupcake, is delicious: The flesh of the most savory animal, in its most savory form.

What bacon is to ordinary meat, Benton's bacon is to ordinary bacon. It is thicker, richer, smokier, saltier. More in every way. I had been looking forward to eating a BLT for a little more than a year since my last one last summer -- the heirlooms have been ripening slowly here in the Rainy Place -- and finally had my chance this weekend. We slathered Gerard's bread with mayonnaise and filled the sandwich with perfectly cooked Smoky Mountain bacon and plump slices of heirloom tomato. Even without the "L," the sandwich was worth the wait.

Matters culinary

I occasionally worry about eating too much sugar. If you spend time reading about cancer, you'll inevitably read something arguing that eating sugar "feeds tumors" and thus should be avoided to the extent possible.

Tumors, after all, are on metabolic hyperdrive compared to normal cells; and glucose, indeed, is the fuel of cellular metabolism. This is why PET scans work; malignant cells suck up and process the radioactive sugar faster than normal ones. But it does not necessarily follow that dietary sugar is like premium unleaded for cancers, in the same way that it doesn't follow that eating fat deposits fat on our bodies. (As they say: It's the calories, stupid.) Cells have elaborate mechanisms for producing their own glucose, which they would do even if one achieved the miserable (and probably impossible) end of eating a diet without sugar. I'm no expert, and this is not the definitive word on the matter, but I found this, and particularly this convincing:

The idea that sugar feeds cancer, if it was true, would understandably terrify anyone. It is this belief, though, that has helped to feed fears of refined sugars and flours and other ‘bad’ carbohydrates.

Recent stories circulating the internet and media have led many people to think that concerns over sugars are real and that they come from upstanding doctors at prestigious institutions. No one can blame them for believing sugar is linked to cancer. There are more than one million websites (a stunning 1,080,000 by last count) capitalizing on this fear and virtually none offering the science.

But it is nothing more than an urban legend, the result of misunderstood and distorted science.
...
But there is no truth to the rumor that sugar causes cancer, or that people with cancer shouldn’t eat sugar because it causes cancer to grow faster, said Dr. Timothy Moynihan, M.D., a cancer specialist at Mayo Clinic, in Rochester, Minnesota. He debunked this popular misconception in a recent article, explaining:

Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.

This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans. Doctors use PET scans to help determine the location of a tumor and see if it has spread. During a PET scan, your doctor injects a small amount of radioactive tracer — typically a form of glucose — into your body. All tissues in your body absorb some of this tracer. But tissues that are using more energy — exhibiting increased metabolic activity — absorb greater amounts.

Tumors are often more metabolically active than healthy tissues. As a result, they may absorb greater amounts of the tracer. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.

This isn't completely dispositive, and I'm not arguing in favor of eating tons of sugar -- just of not worrying overmuch about enjoying dessert. There may be good reasons to moderate the Ben & Jerry's, but depriving tumors of "fuel" is not one of them.

Good news!

My most recent CT scan shows stable disease, so I am continuing on with the Temodar. The questionable nodes all stayed the same size, and my pneumothoraces (collapsed lungs) have improved a bit on both sides. The test did pick up a tiny (3 mm) nodule in the upper portion of my left lung. It is possible that this nodule is a benign after-effect of some mild respiratory disease. It could also be some sort of artifact or shadow caused by the scan equipment itself. It could also be metastasis. Sarcoma mets can show up anywhere in the lung, of course, but they tend to appear first in the lower portion, so I'm going to choose to be optimistic about this spot until we can get a better read on things in the next study. I haven't read the report or talked in detail with Dr. S yet, but I'm quite relieved.

I don't like Dr. Kent Sepkowitz

Perhaps it's just my prejudice against Memorial Sloan Kettering Cancer Center -- or, as I have often called them during our frequent and acrimonious billing disputes, the Memorial Sloan Kettering Cancer Pirates -- but Kent Sepkowitz's essay about his failure to write the families of his dead patients condolence notes made me mad.

He starts off comparing his efforts unfavorably to those of his vet's, who sent a heartfelt note after his dog died. Not a promising comparison from where I sit, and it gets worse from there. 

He goes on -- and I know he's just being honest, and you shouldn't get mad at someone for being honest, because where would we be without self-serving honesty anyway? -- to float and discard some theories about his reticence, finally cutting to the chase: it's really disappointing when patients die, especially when he's just getting going with them. 

Here's the good doctor:

...I think doctors have a strange way of grieving their patients.

Probably no one cares about our feelings when a patient dies, and that’s as it should be. Our personal loss, after all, is trivial — most patients we know only as patients. But we do have feelings, a confusing mishmash that includes disappointment and embarrassment, but is mostly a sinking emptiness.

It’s like this: caring for very sick patients is exciting, probably because doctors, like everyone else, become swept away by human drama and possibilities. Managing a patient places us in the middle of hard decisions, bitter truths and sudden hallway conversations. We become futuristic acrobats of the high tech and the extreme, rather than yesterday’s stodgy pillars of the community, dispensing advice and lozenges, a silver-haired presence to steady any uncertainty.

But then the patient dies and bam! it’s over, just when we had so much to say, so many plans. We are left alone with our hectic thoughts ricocheting left and right and nowhere to point them.

Then, within hours after the death, a new patient is installed in the same room. You look in and see a stranger with darker hair and different clothes, reading a newspaper from somewhere else. And with the new patient comes a new set of visitors, in ones or twos or crowded at the door.

It's about him! Those plans, those thoughts -- all for naught! And now he has to deal with another patient, some drone "with darker hair and different clothes," another faceless object of his doctorly care. He feels too much, his cup runneth over!

Keep your unwritten note, a-hole. And in the spirit of honesty, let me add this: I teeter between seeing doctors as heroes and resenting them mightily. I resent their detachment. I resent the fact that (so far) they are well, and I am sick. I resent that they can go home from the hospital while I, in so many ways, cannot. I resent their money. I resent the thousand small deaths of waiting for their phone calls. I resent that they understand intimately how this disease works, and I do not. 

Ranting aside, I understand why oncologists have to deal with death differently than people in other lines of work. My family doesn't need a note (though it would be nice...). But I do wish they could treat me in ways that make me feel little more special now, while I'm living, less like a guy with dark hair and a magazine and an occasional joke and more like someone precious, with my own unique dreams and aspirations. 

In a lot of ways, I feel like my current doctor filed me away in a rusty mental filing cabinet labeled "Doomed" from the very beginning of our relationship. That may make her work easier, but it's a hard thing for me to live with.

'Not a faith in absolutes'

I picked up Adam Gopnik's children's book, The King in the Window, from the library while looking for a big, immersive chapter book for B. He quickly gravitated to some other stuff from the library pile, so I started reading the Gopnik. That did it: The novel instantly became irresistible, and soon he, L. and I were happily working our way through it. 

Reading the book reminded me of Gopnik's great essay, "The Last of the Metrozoids," in which the art historian and curator Kirk Varnedoe, dying of lung cancer, becomes coach of a somewhat hapless bunch of eight-year-old touch-football wannabes. It's a cute situation, and Gopnik is a cute writer, but he holds himself back, beautifully evoking Varnedoe as a teacher. One scene sticks in my mind: Varnedoe, exacting and calm, tossing a ball to a scared child and methodically teaching him to do one thing right. "When he caught it, Kirk wasn’t too encouraging; when he dropped one he wasn’t too hard. He did not make him think it was easy. He did not make him think that he had done it when he hadn’t. He made him think that he could do it if he chose."

The essay isn't online in reliable form (this cached Google page may work), but it is collected in Gopnik's book Through the Children's Gate. Here's a little more:

I had once said something fatuous to him about enjoying tonight’s sunset, whatever tomorrow would bring, and he had replied that when you know you are dying you cannot simply “live in the moment.” You loved a fine sunset because it slipped so easily into a history, yours and the world’s; part of the pleasure lay in knowing that it was one in a stream of sunsets you had loved, each good, some better, one or two perfect, moving forward in an open series. Once you knew that this one could be the last, it filled you with a sense of dread; what was the point of collecting paintings in a museum you knew was doomed to burn down?

But there were pleasures in life that were meaningful in themselves, that did not depend on their place in an ongoing story, now interrupted. These pleasures were not “aesthetic” thrills—not the hang gliding you had never done or the trip to Maui you had never taken—but things that existed outside the passage of time, things that were beyond comparison, or, rather, beside comparison, off to one side of it. He loved the Metrozoid practices, I came to see, because for him they weren’t really practicing. The game would never come, and the game didn’t matter. What mattered was doing it.

The essay interweaves many threads -- Varnedoe's coaching of the Metrozoids, Gopnik's recollections of befriending his teacher, Varnedoe's last, bravura art history lectures, the 1984 Boston College-Miami game. 

And death, inevitably.

That Sunday, he did something that surprised me. It was the last lecture of the Mellons, and he talked about death. Until then, I had never heard him mention it in public. He had dealt with it by refusing to describe it—from Kirk the ultimate insult. Now, in this last lecture, he turned on the audience and quoted a line from a favorite movie, “Blade Runner,” in which the android leader says, “Time to die,” and at the very end he showed them one of his favorite works, a Richard Serra “Torqued Ellipse,” and he showed them how the work itself, in the physical experiences it offered—inside and outside, safe and precarious, cold and warm—made all the case that needed to be made for the complexity, the emotional urgency, of abstract art. Then he began to talk about his faith. “But what kind of faith?” he asked. “Not a faith in absolutes. Not a religious kind of faith. A faith only in possibility, a faith not that we will know something, finally, but a faith in not knowing, a faith in our ignorance, a faith in our being confounded and dumbfounded, as something fertile with possible meaning and growth."

New chemo protocol?

A poster at Sarcoma Alliance reports her husband's success with a chemo protocol that I had never heard of before. It sounds unbelievably difficult, but he had a good response despite widespread disease:

My husband Steve was diagnosed with epitheliod sarcoma in November 2007 and presented with over 50 spots on his legs , sides and back. He was told initially by his doctor, Dr. Lei chen, that he had a less than 10% chance or survival rate for more than 30 months. We were devastated. He is 35 years old and we have 3 kids. He was experiencing a stomache ache and before they would start any treatment they made him have a full physical. They did a CT scan on his stomache and found that the cancer had created vascular invasion and he had to have a mesenteric bypass. It was a huge operation!! That prolonged any treatement for the cancer for 2 months while he recovered. He then started chemotherapy and we were asked if he would be willing to try an experimental cocktail, and we of course said yes after the diagnosis we got. He just finished his 6th round and he now has only 12 spots on the PET with nothing bigger than 2 mm. The doctors are amazed at his response!! The cocktail he recieved was temodar in pill form 325 mg. worth for seven days along with cisplatin through i.v. the first three days and then a week later one i.v. dose doxil. He has been told recently that he cannot have any more chemo for "a while." He is now waiting to see if he can go on study for a maintenance drug that would hold the cancer right where it is for now in hopes that it won't grow until he can have chemo again. The only problem is that he has a 50% chance of getting a placebo. He wants to continue with the chemo but his Dr. is insisting that he can't. Please let me know if anyone has any knowledge of anything else that is working for this type of cancer.

I believe he is being treated at the University of Utah. If anyone has any insights on where they should go from here, I'm sure she'd appreciate thoughts in the original thread.

Costs and benefits

This item from the Wall Street Journal's health blog caught my eye, because one of the drugs mentioned, sorafenib (Nexavar), is currently in trials for some metastatic sarcomas. The UK's National Health System is denying patients access to several new kidney cancer drugs (including Sutent and Avastin, which are also being tried on sarcomas) because their costs outweigh their benefits. The post explains:

Is extending life by a few months worth $50,000? No, says the UK’s National Institute for Health and Clinical Excellence.
...
That high price isn’t worth the benefit conferred by the drugs, NICE concluded, and buying the drugs would force the National Health System to deny patients other treatments that are a better bang for the pound. The cost-effectiveness limit for NICE is £30,000 per good-quality year of life gained, the Times says.

The currency conversion is $57,638. A year of good-quality life for less than $60,000. I'd pay more than that, but I find the calculation chilling. (More chilling is that some of the cost-benefit calculations used in the United States -- say for airborne contaminants -- value lives at considerably less.) In most places, the price of high-quality, comprehensive health care is restrictions on treatments that haven't proved their worth over large populations. But what about for you, an individual? There's always the chance of being an outlier on the survival cure; of getting, say, eight extra months instead of the two or three these drugs usually provide. And, as these new agents are approved for more indications, the revenues may fuel additional trials to develop combination therapies that may more meaningfully extend life. 

*
But take a drug like Erbitux, which can in some contexts provide six additional weeks of median survival, with uncertain quality of life, for $62,000. Is that a good deal? How about three weeks? I recall it being reported at the ASCO meetings that Erbitux, which happens to be the drug Martha Stewart got in trouble for insider trading on, was approved for a lung-cancer indication because it increased survival by a median of less than a month. 

Is that hope or madness?

Membership has its privileges?

via Boing Boing, a Johns Hopkins study testing a surprising cancer-coping mechanism -- 'shrooms:

A research program designed to enhance spiritual awareness for persons with a cancer diagnosis is accepting volunteer participants at the Bayview Campus of the Johns Hopkins School of Medicine in Baltimore. The program consists of a brief counseling intervention, including medical screening, rapport-building appointments, two all-day sessions that include psilocybin administration, and appointments to facilitate initial integration and application of insights gained. More detailed information is available at cancer-insight.org

Conducted by Drs. Roland Griffiths, William Richards and colleagues, this program is designed to help cancer patients who are suffering with some degree of psychological distress to become less anxious and depressed, and to become more fully engaged with life again. Psilocybin, the psychoactive ingredient in the "sacred mushrooms" that have been used in religious ceremonies by indigenous people in Mesoamerica for approximately two thousand years, is employed to facilitate the resolution of personal conflicts and to occasion states of consciousness that for some may be indistinguishable from visions and mystical experiences recorded in the history of religions. Psilocybin has not been found to be toxic or addictive, and is considered reasonably safe for persons without a history of serious mental illness, when administered in accordance with the safety guidelines published by the Hopkins researchers.

This deserves more attention than a quick-hit link, so I plan on checking out the cancer-insight site. I'll report back. (No, I'm not going to try to sign on for some psilocybin. My grasp on reality is already tenuous enough.)

Mailbag

I'm lucky, insurance-wise, but my doctor increasingly isn't. Shed no tears for Dr. S -- she's doing just fine -- but the red tape she and her assistants deal with is unbelievable and devours time that could be used, you know, to treat patients and research new cures for cancer. Frivolous stuff like that. 

Take pre-approval letters, of which I already had plenty. As of the beginning of the fiscal year, though, new preapproval (and rejection) letters have been lighting in my mailbox like flies. 

The latest, for a procedure which never before required pre-approval, is a classic:

Dear SICK GUY,

American Imaging Management, Inc. ("AIM") provides utilization management service on behalf of Blue Cross and Blue Shield...

Translation: "We're hoping to stop you from managing to utilize our services."