I scheduled my consultation visits and began debating the choices I was facing. By this time I was only rarely thinking about the end of my life and was actually too busy to focus on anything but the fight for my life.

I had been invited to a friend’s wedding in Toronto in early July. He and my eldest daughter and I had played together in a rhythm and blues band in the early 90’s so she accompanied me to the wedding and from there we drove to Boston with one of my brothers.

After a long and tiring drive, we found our hotel in the outskirts of Boston and then drove to the appointment in Brookline. We were ushered into a jam-packed waiting room, filled with a large number of Mesothelioma and other lung cancer patients. The wait was long but ultimately worth it. I spent almost two hours with Dr. Michael Jaklitsch, a partner of Dr. Sugarbaker's and member of the thoracic surgery team, as he examined my MRI and CT scan images, reviewed the results of my respiratory test and looked over my chemistry results. Mostly, he spent his time answering my questions and carefully watching me, as I deluged him with questions about their process, the clinical trial and the chances I had for recovery. He shared several interesting observations with me that struck a chord with me and filled me with hope.

1. The amount of tumor I had was relatively little, compared to most patients he saw. He felt my detection had been early. Early was good from what I knew about cancers.
2. My general health, breathing, blood and urine chemistry etc. were all good, suggesting that I would do well in surgery.
3. He felt that I would make a good candidate for the next round of clinical trials, which were due to begin near the middle of September, almost three months away.
4. I indicated that I was OK with waiting since I needed the extra time to allow my wife to finish up her teaching obligations and for me to finish putting my affairs in order. At this point he laughed and told me that the most positive sign so far was that I was clearly in charge of the disease and not the other way around. This struck me as curious but he told me that many people who learn they have Mesothelioma are reluctant to face the issue and become withdrawn and passive, leaving the selection of their course of treatment to a loved one, a spouse or a trusted friend. Such cases were rarely among the survivors. He assured me that being active in my own defense was the best sign for a positive outcome.

My family and I left the interview feeling upbeat and encouraged but still uncertain about which way to proceed. My paraffin block tissue samples and biopsy slides remained with BWH and wouldn’t be returned for several months.

My second visit was at UCLA. I was asked to send my pre and post operative reports, along with my pathology reports in advance of the appointment. I was also asked to provide the paraffin blocks and slides but since these were still in Boston I was unable to oblige. I discovered that most doctors simply wouldn’t take the word a pathologist from a different institution when it came to this diagnosis. Everyone wanted to repeat the analysis just to be sure. The appointment was short and to the point. If I really had Mesothelioma and if we could establish that I was still without lymph node involvement then I would be a candidate for P&D followed by radiation. I was told this would extend my life a number of years in the hope that other treatments might come along which would keep me alive beyond that. I was not offered a cure or even a hope of a cure. This dose of realism served to push me back into depression and hopelessness. I knew there were survivors of this cancer that had hung on as long as five and even seven years. I even knew of a few ten plus year survivors including one famous author, a university professor, who had survived for over twenty years. As few as these were, I wanted to be among them.

The heartbreaking part of this story is that no one can truly offer a cure and that some doctors are more willing to attempt surgery and radical treatments than others are. The issue of the treatment doing more damage than the disease was being widely debated, but as a patient with Mesothelioma I considered my cancer to be nothing less than a death sentence. No treatment could be worse than the certainty of dying, I reasoned. Philosophically at least, I was prepared to risk all, even if it destroyed the quality of life I that I would have during the time remaining to me

Although the Boston experience had been more upbeat, I was still unsure whether an EPP was the wisest course and I returned to UCLA to investigate whether they would accept me for P&D surgery. I had been advised that to qualify for P&D I would have to undergo a cervical mediastinoscopy, a surgical procedure where the lymph nodes surrounding the chest cavity would be sampled for signs of tumor metastasis. In other words, as long as the tumor hadn’t reached the lymphatic system yet, I would be a candidate for surgery at UCLA. After checking with Dr. Jaklitsch and receiving assurances that this procedure wouldn’t stop them from performing an EPP, I agreed and underwent the operation in early August. Tests on the lymphatic tissue proved negative, but in the meantime I had decided that I would "hang in there" until the clinical trials at BWH in Boston started up again. I began looking forward to tackling this monster head-on, resolved to use the most complete (or if you prefer "extreme") treatment that I could find.

Boston’s clinical trial involved an EPP with adjuvant intra-cavitary heated chemotherapy during the operation, followed by full courses of chemotherapy and radiation after recovery from surgery. In layman’s English this meant that after removing my lung, pleura, diaphragm and pericardium, 40-degree Celsius Cisplatinum solution would be circulated through my empty chest cavity and abdomen. The intent was to destroy any stray tumor cells that might have escaped the surgeon’s knife. This was to be followed by three to four months of additional intravenous chemotherapy and then approximately one and a half months of whole chest radiation. I was convinced that this was the treatment that offered the best hope for a cure, and a cure was what I was after.

My reading had told me that the hospital was conducting a dose escalation phase one clinical trial. Phase one trials seek to establish safe dosages for chemotherapy by using real patients as the test group. I knew that the first group, or cohort, of patients in the study would receive a low dose of the chemotherapy, just at or below the level where the drug had been observed to work in earlier tests. I made up my mind that I would delay my operation until I could be assured a place in the second cohort of the trial, at a dose that was more likely to be effective. I was also aware that later cohorts would receive even higher doses and therefore might face the risk of collateral damage from the chemotherapy. This was a problem I wanted to avoid, so I settled upon the plan to try for the second cohort and avoid any treatment before or after that group of patients. As it turned out, this could have been a disaster for me but perhaps was a stroke of luck. I will return to this subject momentarily.