After exploratory surgery, I was diagnosed with malignant pleural mesothelioma on December 28, 1999. My surgeon and his associates were pessimistic: "a few months, perhaps". The only hopeful thing they said was "good luck".

There matters might have stood had not my children urged me to get a second opinion. So, during the third week of January, my husband and I (the "we" in what follows) went to New York for consultations with three oncologists: one at Sloan-Kettering, one at New York Hospital, and one at Presbyterian. It was at Presbyterian that we learned that in the same hospital where I had been operated on there was a mesothelioma clinic and program. When I asked Dr. Valerie Ruesch at Sloan-Kettering whether there was anything I should not do, she said, "Do not do nothing."

When we returned to Chicago, we saw an oncologist at Northwestern to ensure that if I had to be hospitalized again, it would be there (not at the hospital that had performed the exploratory surgery). We then made an appointment at the "meso-clinic" I had been referred to (at the hospital that had performed the surgery). My first appointment was February 10. By then, I was sure that neither surgery nor radiation would have any positive effect on my rapidly growing tumor. Accordingly, what was discussed at this initial meeting was a small variety of chemotherapies. One of these, called "multi-targeted-antifoliant" (MTA) was available only in a clinical trial and, therefore,on an experimental basis. MTA seemed to have few of the side-effects usually associated with "chemo" (nausea, weakness, and loss of hair). We said: yes!

The medical group was eager to get patients into the trials. As soon as we indicated our inclination to take the MTA route, events happened fast. But what happened, by far the fastest, was the ritual of signing the so-called "informed consent form". Its several pages were waved in front of me but opened only to the page on which I was to sign. I was not given a copy. I only succeeded in obtaining a copy many weeks later. I was then surprised to see how much negative information there was in it. I would indeed have signed - "consented" - anyway. My only alternative was death. But I strongly disapprove of turning an important moment of decision into an empty ritual.

After a CT scan and a pulmonary function test, I started MTA treatment on March 1, 2000. The protocol involves a "blood draw" (also known as "test") and a visit with the medical staff once every week. As long as I "pass" the test, there is chemo once every three weeks and a CT scan, pulmonary function test, and arterial blood draw once every six weeks. The chemo takes only ten minutes and has had no obvious side-effects. After the first chemo, I went to a lecture about Medieval Cosmology at Regenstein Library.

About six weeks after I entered the chemo program, I had my first informative meeting with my doctors. One cannot receive chemo without seeing -- and being seen by -- one's doctors, but that is for their information, not the patient's. They checked for lesions on my lips something or other in my throat, thyroid events, and so on.

Sometimes they listened to my breathing with or without a stethoscope. And, of course, there was the endless parade of "vitals"-- temperature, blood pressure, and sometimes height and weight. During the entire time, the nurses and clerical staff kept changing. The chance of receiving the treatment intended on the day intended was partially dependent on the patient keeping her wits. I frequently joked that it is a good thing I have only cancer and not Alzheimer's!

At the first of these informative meetings, I learned that my tumor, which had been growing very fast, had not grown at all during the previous six weeks. Six weeks later I learned that, in fact, it had by then shrunk by 25%. Six weeks after that I learned that it had shrunk by another 10%. However, at the fourth of these meeting, I learned both that the hospital had lost my CT scans and that the oncologist, after consulting Eli Lilly (MTA's manufacturer), had decided to cut me off from any further treatments! After seven treatments, I was on my own again not because I no longer needed the MTA but because I no longer satisfied the research protocol. Unless one has a reduction in tumor-size of at least 50%, one must be "cut off"; 35% or even 45% reduction is not good enough. I was astonished. For some (intense) hours I pondered what could possibly generate such a protocol, finally concluding that pharmaceutical companies are eager to demonstrate that they do not kill more than they preserve (ergo 50/50). There may even be something to that conclusion. About this time, a boy in Ohio was killed by some experimental gene therapy.

But now the tale gets morally interesting. After the seven treatments I had received, my condition had improved enormously. Whereas earlier I had been breathless and nauseated (although functional), now I could swim, walk, talk, and eat. I pointed all this out to my (former) oncologist, who was totally unresponsive. I suspect that she was primarily dedicated to making a name for herself with new therapies. Notoriously poor with patients, meeting with me made the doctor nervous, even irritable.

My husband, friends, relatives, and I were understandably nonplussed by the arbitrariness of the cut-off. MTA was not obtainable except in a clinical trial. Cutting me off was a sentence of death. Even some of the other doctors at the clinic were dismayed that a patient who was doing so well (substantial tumor reduction and no side effects) should be deprived of treatment.

I contacted friends who had connections to the Federal Drug Administration (FDA). I contacted members of the Institutional Review Board (IRB) at the institution where I was being treated. And my husband, who is a lawyer, contacted the Director of Medical Research at Eli Lilly. When my husband called Eli Lilly, he was not threatening a lawsuit, only asking if it might not be possible for a patient, who was flourishing on their drug, to continue taking it. As someone else remarked, Eli Lilly should have me as their poster child.

This call may have been decisive. Soon after, another oncologist (senior to the one who had cut me off) phoned to say that he was taking over my case.

It is now mid-November. I am in my thirteenth cycle of MTA and continue to feel fine. I have not had the last CT scan results, but I am sure they will be much like the others. The consensus among the medical staff is that, as long as I continue to benefit, they will continue the MTA.

My training and inclinations are philosophical. I have told this story not to expose but to pose two questions, hoping for answers:

First, why that 50% cut-off in the protocol? Who gains and who loses by drawing the line for participation in a clinical trial there?

Second, what happens to other other patients who may have results from MTA (or other clinical trial drugs) just as good as mine? Would they be cut off as I was? Would they be too intimidated by the doctors to do anything but go home and die? What happens to people who don't have a lawyer in the family to phone the drug company?

I am, of course, happy that I have had many extra months of good life. But I am also appalled that, if it had not been for my strength, my husband's legal skills, and my family's four generations-long association with the institution in question, I might well now be dead. That seems wrong. Too much has depended on the intelligence and clout of the patient. You shouldn't have to be Fay Sawyier to get fair treatment!