Some Useful Background Information

For those who are not familiar with how I learned about my cancer, and the progress that I've made, and some of the setbacks I've suffered in the process, I thought it would be helpful to provide some background information.

First and foremost, because of my athletic activities, my dedicated training habits, healthy eating habits, and generally healthy lifestyle (apart from my work-related stress issues), I thought I was impervious to any serious disease, including cancer. In the previous three years I had completed three triathlons, three regattas at the Head of the Charles with my Columbia teammates, and run virtually thousands of miles.

In May I was training for the New York City Triathlon, which I planned to compete in with my son, Peter. I had no problem in swimming and biking, but in running I discovered I had no endurance: for the first time in my life, I couldn't run a full mile without walking. I felt bewildered and perplexed.

By the middle of June I also started to experience acid reflux, which I had never previously experienced. Finally, on Tuesday, June 16th I visited my internist, Tom Nash, who thought that I probably had a perforated ulcer, and sent me for a CT scan that afternoon.

On the next morning he called to say that he had to see me that morning, right away. Needless to say, I was quite nervous. Once in his office, he said the three words you never want to hear: you have cancer. I had a tumor, located in my left abdomen, which was approximately seven to eight inches in diameter. It appeared to be intertwined with my intestines, and was growing very quickly. He was fairly confident that it was non-Hodgkins Lymphoma, which is both very treatable, and reasonably curable, if caught early. He sent me that afternoon to have a biopsy, which was quite painful, and ultimately inconclusive, since it suggested both NHL, but also myeloma, which is far more dangerous.

That evening Tom called to give me the phone number for Dr. Morton Coleman, one of the nation's leading experts on the treatment of both lymphoma and myeloma, and a senior oncologist at New York Hospital. He said that Dr. Coleman was the right oncologist for me, and that I would be very fortunate to be one of his patients.

Dr. Coleman called that evening, and Denise and I arranged to meet him in his office, near NY Hospital, on June 18th. Dr. Coleman, who is in late 60s, and is avuncular in a reassuring fashion similar to Walter Cronkite, said my biopsy results were unclear, and he said that correct treatment necessitated an accurate diagnosis of my cancer. However, he was generally reassuring, and seemed confident that I would get through this life-threatening experience successfully. For the first time, I had some sense of hope. After doing a bone biopsy (which is quite painful), he and Tom Nash agreed that I should undergo laproscopic surgery, to obtain a better cell sample for analysis.

I was referred to Kevin Morrissey, a senior surgeon at NY Hospital, who performed laproscopic surgery on me, at NY Hospital, on June 25th. After the surgery I was hospitalized for a day. After being discharged, in response to the anaesthia, I became violently ill, although I recovered by the next day. It was not a pleasant experience, although I recognized that Dr. Morrissey had done a superb job.

The additional lab results from my surgery disclosed that, in fact, I had myeloma, which was not welcome news. Denise and I were both a little in shock. After going on the internet to learn about myeloma, we were discouraged: it is a very dangerous blood cancer which attacks the bone marrow, usually in several locations, which is why it is called multiple myeloma, and is often fatal. The average life expectancy appeared to be 2-3 years (which, it turns out, is no longer accurate).

However, my bone biopsy disclosed that I had no cancer in my bone marrow, which is very unusal for myeloma, which is almost always found in the bone marrow.

Going on the internet, with a little investigative work, I concluded -- before speaking with Dr. Coleman -- that I had a very rare form of myeloma, called extra medullary plasmacytoma, which is a myeloma tumor in a patient's soft tissue, typically in the sinus or throat, but occasionally in other parts of the body, including the abdomen. It accounts for approximately 3% of all myeloma cases (a tiny percentage), and appeared to be quite treatable.

The next day Denise and I visited with Dr. Coleman, who confirmed my self-diagnosis, and was generally encouraging about my prospects, in view of the fact that the myeloma had not yet attacked my bone marrow. Denise and I both felt some higher level of reassurance, and hope. Dr. Coleman and his colleagues formulated a fairly aggressive regime of drug and chemotherapy, starting right away, that required me to be treated twice a week, for three consecutive weeks, with one week off.

I had only been on the regime of drug and chemotherapy (described below) for a short period when I had a significant setback. On Thursday, July 9th, Dr. Mark Pasmantier, Dr. Coleman's partner, looked at my blood results, and realized that I had a dangerously low red blood cell count, likely arising from some source of internal bleeding. I could barely stand up. He promptly arranged for my hospitalization through the Emergency Room at NY Hospital, where I was admitted a few minutes later, and was given, in short order, three pints of blood through transfusions, which had an immediate impact on my energy level. In an effort to identify the source of the internal bleeding, I was referred by Dr. Pasmantier to Mark Pochapin, the director of the Jay Monahan Center for Gastrointestinal Health. Dr. Pochapin, a relatively young but very distinguished physician who we found extremely impressive, and with a very reassuring bedside manner, arranged to do an endoscopy the following day. An endoscopy is a procedure in which they give you general anesthesia, and put a microscopic tube down your throat to examine your upper intestine. The procedure did not reveal any source of internal bleeding, so Dr. Pochapin decided that I should stay in the hospital for another day, in order to have a colonoscopy, to rule out that as a potential source of interna bleeding. Since both procedures require that you forego eating, I spent 48 hours without either eating (or sleeping). The evening before the colonoscopy I had to drink almost a half gallon of a horrible-tasting clear fluid, which took about three hours, leaving me -- temporarily -- with a fully bloated stomach, at about midnight. From midnight until the next morning I was up every half hour to rush to the bathroom, during the course of which I lost at least ten pounds, and managed to get virtually no sleep. When I was discharged on Saturday, July 11th, I could barely stand, having not slept or eaten in over two days. Denise drove us out to Sag Harbor, where that evening we attended the 59th birthday for Rick Prins, a close friend and classmate from Michigan Law School. We had a terrific time with a group of friends of Rick and his wife Connie, in their new home, and I felt liberated from the dismal experience of spending two days and evenings in the hospital. That was the first of my two major hospitalizations during my "cancer journey", at least to date.

I thought it would be helpful to describe the drug and chemotherapy I receive, to provide a sense of both what I benefit from, but also the side effects of the treatment.

Until three weeks ago, when my lung collapsed, I was receiving, twice a week, a combination of 50 ml of Decadron, a powerful steroid, and Velcade, a drug approved by the FDA in June of 2008 for patients initially diagnosed with myeloma (although it had been previously approved for patients who suffered a recurrence of myeloma).

Velcade is a "breakthrough drug" that is extremely effective in destroying myeloma cancer cells.
It is a proteasome inhibitor, which blocks the activity of proteasomes (enzymes that play an important role in cell function and growth), and disrupts the growth of cells, and the survival of myeloma cancer cells. In effect, Velcade targets and poisons the myeloma cells, without affecting any other cells (unlike chemotherapy), making it extremely effective. Combined with steroids, which act as an "accelerant" for Velcade, Velcade becomes even more effective in the destruction of cancer cells. I feel very lucky to be able to benefit from Velcade.

The megadose of steroids, combined with Velcade, has a very powerful effect on the patient, and in my case causes severe anemia within approximately 24 hours of treatment. (The steroids evidently "disarm" certain biological functions, like your immune system, and significantly enhance the effectiveness of Velcade.)

Every third week I also receive Cytoxan and Doxil, both very powerful forms of chemotherapy.

The combination of the drugs has had a powerful effect on me, many days often making it difficult to function. Velcade and the chemotherapy produce neuropothy, which is an interference with the transmission of nerve impulses from the brain to your hands and feet. As a result of the neuropothy, your legs can feel like they are encased in cement, walking is difficult at best, and on some mornings you can barely get out of bed. In addition, because of the chemotherapy, many food groups have become inedible, simply because they taste terrible. The drugs also cause constipation, so you need to take laxatives regulary to insure that you don't get into trouble.

In short, the effects of the drug and chemotherapy are significant, and require that you develop "coping strategies" to get by each day.

Let me take a moment here and acknowledge, with extraordinary gratitude, the extremely important, and self-sacrificial, role that Denise has played throughout the process of my treatment, and intermittent hospitalizations, making it possible for me to get through the treatment process. Denise has gone to every doctor's appointment, sat with me through every hospitalization, bringing in food that I could actually eat, monitors my daily medications, and has cared for me through some of the worst days, when I could barely stand up. She has cooked almost all of our meals, helped to change my diet in favor of healthier foods (that may also be beneficial for fighting cancer), done tons of laundry resulting from chronic neat sweats, and made every effort imaginable to be supportive. When my lung collapsed, she took me to the Emergency Room, and stayed until 2:00 am, and then stayed with me every day and late into the evening. When I was rushed to the hospital with a dangerously low red blood cell count, arising from internal bleeding, she escorted me into the ER, and stayed with me throughout the hospitalization. I simply cannot imagine going through this experience without the daily assistance, support and affection I receive from Denise. She has been an angel.

Until I contracted pneumonia, and subsequently suffered my lung collapse, I was receiving my drug and chemo treatments each week at the offices of Dr. Coleman. Now that I've largely recovered from my operation, and have most of my strength back, I anticipate that I will promptly resume drug and chemotherapy, which will now likely go through November.

However, the good news -- the great news -- is that my cancer is rapidly retreating. The marker used to measure my cancer level -- a protein called IGG -- has reduced from 6600 to less than 1100, and Dr. Coleman seems confident that, by the end of my treatments, the level will be reduced to zero. Denise and I are both thrilled at my progress, and confident in Dr. Coleman's ability to eliminate the myeloma from my system.

There is additional information about this experience which I haven't included, but I will include in later entries. The good news is that I appear to be making significant progress in my war on cancer, despite occasional setbacks, like the collapsed lung.