CancerGuide: Inspirational Patient Stories
Starting in June 1988 I had some bizarre, but not life threatening, symptoms. I felt fine otherwise. As time passed, the symptoms got worse, and new symptoms would appear. But no one could figure out what was wrong. In February 1989, I skied 15 miles to top of Colorado's Gray's Peak at over 14,000 feet. That day, despite my overall fatigue, I beat both of my companions to the summit. Four months later, when on a shopping trip, I found I could not walk three blocks without stopping several times to rest. At that point I suddenly thought, "If they don't find out what's wrong with me, I'm going to die." I was very sick indeed with fevers, night sweats, anemia, fatigue, loss of appetite and rapid weight loss, but I somehow had assumed that at age 32 I could not have a serious health problem - it couldn't happen to me.
The next day I had a doctor's appointment and told her of a mass I had found in my scrotum. She checked it out, pronounced it to be a variocele, a benign mass of veins, and referred me to a urologist, but it was quite clear that she didn't think it had anything to do with my problems. I flew off to the East for my father's 60th birthday. Just after I came back, I had my appointment with Dr. Stark, a local urologist. It was August 16th, 1989.
August 16, 1989
After hearing my tale of strange symptoms, Dr. Stark sent me across the street to the hospital for an ultrasound of the kidneys. The technician made no comment as she probed my right kidney, but she suddenly stopped after starting to examine the left. She said it was "big" and immediately called over the radiologist who probed it intensely and kept mumbling about "the cava" and a "thrombus". I actually shook the man's hand, telling him how happy I was that he had found my mysterious problem. I asked him a few questions about what it might be, but he was noncommittal, mentioning only a possible "cyst" or "infection." He gave me a copy of my films which I took over to Dr. Stark's office.
Dr. Stark was very straight about it. There was a 98% chance I had kidney cancer, and it was a large tumor. I managed to get out a few questions but then I went flat out hysterical. I just cried and cried and screamed and cried and screamed for more than an hour. I wasn't afraid of cancer per se. But I knew that advanced cancer was usually incurable, and I knew, given my symptoms, and how sick I was, that I had advanced cancer. I was probably going to die. I knew that intuitively. I also felt that it would be a mistake to hold my feelings in. There are times when it is right to cry. When I finished, I looked out the iron grated window of the antiseptic examining room to the busy street below. Everything was warm and alive and normal there. My separation from that normal world was vast. I thought, "Nothing will ever be the same again." My belief that life was controllable and predictable was completely stripped away in a few seconds, leaving only a gaping and terrifying uncertainty. I could not imagine how to deal with this.
When I got home, I called my parents in Connecticut - my mother answered the phone and I just told her: "Mom, I have Cancer." There just wasn't much else to say. My parents said they'd fly out right away. The next day I had a CT scan, and while lying flat on my back on a gurney getting IV hydration before the scan, I lost it again. I felt I was falling into an infinitely deep black pit. I felt like I was facing infinity - there was no way to handle it.
After the scan, I took the films across the street to Dr. Stark's office. When I walked in the door, there were my parents. I was so thankful to see them - they were the best sight I have ever seen. Dr. Stark would examine the films, and then tell us the result. I already knew that if the cancer had metastasized I was terminally ill. Dr. Stark started to show us the pictures. I got weak in the knees and had to sit down, then I told him to get to the bottom line first, then the details. The tumor was huge and had replaced part of the liver by direct extension and local lymph nodes were probably involved. But it had not spread distantly. Dr. Stark told us there was a 50-50 chance he could remove the tumor completely, and that if he did, I'd have a 40% chance to live five years. I multiplied and got a 20% chance to live five years. He said not to think of it that way. There was some wisdom in that - something I still don't completely understand.
The next few days were a blur of decisions and hysteria. My emotions would change from second to second from despair, to horror, to hope, to extreme anger to moments of calm. At one point, my friend Vi Allured visited me and calmed me by reminding me of some extraordinary alpine lakes we'd seen from a high peak in Colorado's Gore range. She held my hand and said someday we would go to the Willow Lakes.
My uncle Ed happens to be a prominent surgeon, and because this surgery was obviously going to be tricky, we decided that we should get a recommendation from him rather than have Dr. Stark do it. I felt then and still do that Dr. Stark is an extraordinary and compassionate human being - but we didn't know anything about his technical abilities. Towards the end of this period I had my first constructive thought. I could not deal with the infinite. But I could take things one step at a time. I could concentrate on practical things to help myself. The first step was to get ready for surgery, to try to get my weight and strength up as much as possible and to learn anything that might aid my recovery.
We flew to Connecticut and I had my surgery ten days later at the Massachusetts General Hospital. My recovery from the surgery was slow but steady. It turned out that although almost the first thing my new surgeon said to me was, " It has quite definitely invaded the liver," it had not. And all 27 lymph nodes were negative. The tumor was huge and had grown through the renal vein into the inferior vena cava, but it was otherwise contained within the kidney. I had a real chance to make it. And I was told I would not need any more treatment.
As I was checking out of the hospital I asked to see my chart. I didn't have any particular reason. Somehow, I went through the telephone book sized volume and picked out the operative report and the pathology report and asked for copies. This was a really good idea, but I have no idea how I knew that was what was important. I just did.
Just as I was about to walk off the floor, the head nurse suddenly told us I had two doctor appointments in the basement. I had no idea why. The first was with Dr. Willets, the radiation oncologist. I liked Dr. Willets - he was very earnest, and energetic, and I sensed that he really believed in the treatment he gave. Previously, Dr. Willets had said that he didn't recommend radiation. But now after carefully reviewing the pathology, he changed his mind. I tearfully accepted his recommendation and rather weakly asked about side effects - he said only that I'd "tolerate the treatment well." I also asked how much it would help. He said with radiation I'd have an 80% chance. This was so much better than what I expected that I got a little suspicious and asked, "80% chance of what?" and it turned out he meant an 80% chance that I would not have a local recurrence. The treatment would not affect the chance of having a distant recurrence.
Twenty minutes later we all crowded into the cramped and disorganized office of Dr. Rodney Carew. Dr. Carew was a "medical oncologist". I didn't even know what a medical oncologist was. I was about to get a lesson. The first thing Dr. Carew did was to wave a small toy magic wand around and say, "I wish I could make all your troubles go away. But I can't." Then he proceeded to tell me that radiation would be worthless, and that if I was going to have a problem it was probably going to be in the form of metastatic disease, not a local recurrence. Then he offered me a clinical trial of Interferon as an experimental attempt to reduce the risk of recurrence, which he said was "high". He left a book open on his desk where I could see that showed that I had only a 25-35% chance of living 5 years, much worse than I had thought. But then he told me that the trial was "randomized" and explained that I would have a 50% chance of getting interferon and a 50% chance of getting nothing. I asked if I could also have the radiation if I wanted it and still be in his trial, but he said no. I asked him why not and it was clear that the reason was that it was against the rules of the trial. And this is the critical part - the reason was not that getting both treatments was not in my interest. I could also tell that he "wanted" me for his trial - that he had an interest in having me participate that went beyond giving me the best treatment. At that moment everything changed - no longer could I assume that the doctors either knew what the best treatment was or that that they would even act in my best interests. Well that was it. The decision between these two treatments was up to me.
On the drive back to my parent's house, I agonized about the decision. How could I, with no medical training, be expected to make this life and death decision, when these doctors with their years of training and experience could not make a decision as to which was best. My friend Vi had come out to see me and was with me during the doctor appointments and during the drive home. She flew home to Colorado a few days later. Well Vi happens to have a Ph.D. in something like physical chemistry and quantum mechanics. Science does not intimidate her and she knew exactly how to help. When she got home, she went to the library and looked up some papers on interferon and another drug called Interleukin-2 that we'd heard about, and sent them to me. Reading these papers, the lights went back on. I could understand this stuff! The words were tough, but in terms of how much Interferon helped patients, it wasn't really too hard to understand. Then I knew how to make my decision. I would have the facts - the data! That was what it was about. I would apply my desire to aggressively fight for every scrap of probability I could to the data and I would have my answer.
I talked about the situation with Uncle Ed who, in passing, mentioned that I might be able to get interferon "off protocol." I didn't understand what "off protocol" meant, but he explained that interferon was FDA approved, and even though it wasn't approved for kidney cancer, a doctor could prescribe it legally. Dr. Carew, in spite of my obvious distress about the possibility of being in the control group and the rule against having concurrent radiation, had not told me about this possibility. I had actually heard of interferon before I got sick, but as far as I knew it was a high tech thing, almost at the level of science fiction. I had no clue that interferon was a standard prescription drug.
Uncle Ed told me that he knew of a doctor, Dr. Mary Todd, at Yale who might give me Interferon off protocol. I also had an appointment with a Dr. Richard Peschel, also at Yale, to talk about the radiation - I had told Dr. Willets that I wanted to do the radiation in Connecticut rather than Boston, and he referred me to Dr. Peschel.
Dr. Peschel did not have good news for me. I think he is the most compassionate and caring doctor I have ever met, so I'm glad I heard it from him. First he told me that radiation had a significant chance of causing serious and permanent damage to my intestines. I could end up with a colestomy or even dead. This was in sharp contrast to what Dr. Willets had told me when I asked about side effects. He also told me that the studies that had been done had not shown any benefit for radiation in my situation. He said that Willets' recommendation for radiation was based on a consult with a famous radiation oncologist at Mass General and that for that reason it had to be taken seriously. We asked him if the radiation could be given to just one small area the surgeon was particularly concerned about. Dr. Peschel really listened to this, and actually thought it was an idea worth considering. Before I left, I asked Dr. Peschel if he had any references to studies in the medical literature that would support his opinions. He was very obliging and rather than just giving me references, went to his office and xeroxed the actual articles for me.
After digesting all of this, I tentatively decided that Interferon off-protocol and radiation focused just on the area of the renal vein stump was my best bet. The odds were against either helping, but I thought there was a chance that they might help, and I was determined to fight for every scrap of probability. Like Captain Kirk in one of my favorite Star Trek episodes, I had found a way out of an unwinnable dilemma by "reprogramming the simulation" - by creating and finding new rules.
Dr. Todd, it turned out, refused to give me Interferon off protocol, offering the same protocol Dr. Carew had offered, and saying that it would be "unethical" to give me interferon off protocol. I found this reasoning remarkable, since the only difference between on protocol and off protocol was societal benefits that would accrue from my being a data point. But a fundamental rule of ethics states that the ends do not justify the means - if it was unethical off protocol, it was unethical on protocol. Period. But I did learn something else. I had discussed with Dr. Carew the requirements of coming to Boston for follow-up exams were I to enter his protocol, and he understood very well that this would be a major imposition. But he had not bothered to tell me that his trial, like many clinical trials, was being done at many different hospitals, some of which might be more convenient than his. Naturally, as usual, I had no idea. Dr. Todd also said that since it was now a month since surgery, I should have my first follow-up CT scan. She was very reassuring, telling me that she was 95% sure that everything would be OK.
On October 6th, Dr. Todd called me at home to give me the results of my CT scan. There were many tiny "spots" all over both of my lungs. I asked if there were more than 5. There were. I asked if there were more than 10. There were. I asked how many, but all she could say was "lots". She said they might not be cancer and that I should let her do the worrying for me. So I asked her what it might be other than cancer. She named several different fungal diseases. I had been tested for every single one during the diagnosis phase. Every single test had been unequivocally negative. I could not find a rational alternative explanation. I knew I had widely metastatic cancer. All of my doctors had told me that if the disease spread, it was incurable. I had just finished reading a paper Dr. Todd had written that gave the three year survival for metastatic kidney cancer as less than five percent. I was terminally ill with a few months to live. My family and my best friend, Jon, had overheard the phone conversation and were all waiting when I finished. About the first thing I said was that some patients survived a lot longer than the average - if 5% lived three years, I wanted to be in that 5% and that it was possible. I believed that, but I also thought that my chances of being in that 5% were indeed 5%. Actually considering that I had widespread disease discovered soon after surgery, I thought my chances were far less than five percent. But not zero. The difference between five percent and zero percent is not five percent. It is infinite. Although I could see this glimmer of hope, I was blackly depressed by the news. Everything just seemed flat, life tasted the way food tastes when you're too sick to eat, flat and tasteless. Despite this, I was not giving up. No point in that, I thought, no matter how bad the odds.
I knew that Interleukin-2 was my best hope for survival. I had already read about it and knew that about 15% of patients were responding to treatment with this drug. I also knew that IL-2 treatment was highly toxic and that most patients had to be treated in intensive care. Intensive care made me think of ventilators and the movie Coma. The thought of it scared the hell out of me. In addition, despite the fact that some patients with previously incurable cancer had been in complete remission for four years with IL-2 treatment, it was not FDA approved, and could only be gotten by participating in a clinical trial. I also had learned enough about cancer research that I realized that there would lots of attempts to combine the treatment with other drugs to improve the response rate. I decided that the response rate was so dismal that I should gamble on any addition to the treatment that seemed promising based on preliminary results. Dr. Todd was offering a trial of high dose IL-2 alone, but I wanted to try for something better. But I didn't know how to find out what other treatments were available.
We knew that Steve Rosenberg at NCI had developed IL-2 treatment, so we asked Dr. Todd to call NCI for us, but she said she couldn't get through. I went to my uncle's hospital and used the small medical library there to try to find some articles on IL-2. I didn't know that I could have gone to Yale's much better library, and I didn't know about database programs like MedLine. So I spent a few frustrating and unproductive hours with a paper index called Index Medicus. After I'd given up, I started perusing unbound journals on the shelves, almost at random. Then something incredible happened. By pure chance, I came upon Dr. Rosenberg's latest article, a landmark review of all of his work with 652 cancer patients treated with IL-2 and IL-2 combined with other things. It was out that month, October 1989, and it must've been on the shelf only a few days. Rosenberg's paper contained far more data on IL-2 than had ever been published before. It is said that, "Chance favors the prepared mind." I recognized the significance instantly. The article seemed to show a higher response rate for IL-2+LAK cells than for IL-2 alone, and also reported very promising preliminary results from combining IL-2 with interferon (IFN) - preliminarily they were getting a 40% response rate. Way better than the 15-20% rate for IL-2 alone.
My mother found an article in Prevention Magazine about how to get information about cancer clinical trials from the NCI's Cancer Information Service at 800-4-CANCER, so I called and the very next day got a thick stack of trials for metastatic renal cell cancer. Lots of them were IL-2 trials, and some were IL-2/LAK or IL-2/IFN trials. Many were also trials of new "chemo" drugs. I know that kidney cancer had proven resistant to dozens of other chemo drugs in the past so I put these aside.
Meanwhile I had weekly appointments with Dr. Todd to investigate the "spots" on my lungs. It was a nightmare. First I had a bone scan. It came back positive in one rib and in one place on my lower thoracic spine. I had this "minor back ache" that I thought was an aftereffect of the surgery. It seemed to be getting worse. Then I had an MRI of my spine. The news could not have been worse. I had extensive disease in my lower back and some in my upper back as well. Nine different vertebrae were involved.
During this time I was learning from Dr. Todd. She wanted me for her trial, but she could see I was going to go elsewhere, and to her great credit, she wanted to make sure I didn't make a mistake, so she spent extra time answering my questions and teaching me important things about both how to read papers and about IL-2. She told me that getting really high doses seemed to be important, and that managing the patient so he could get most of the scheduled doses required expertise and experience. With respect to the IL-2 + LAK combination, she noticed that in the paper I had found the response times for the patients who responded to IL-2 + LAK did not have as many "+" signs after them compared to the IL-2 alone response times all of which had "+" signs. I didn't know what the plus signs meant but it turned out to be critically important. She explained that a "+" meant the patient hadn't relapsed. It looked like although more patients responded to IL-2 + LAK, most of them were relapsing. So the IL-2 + IFN combination looked more interesting to me, although the data were too new to tell if these responses would hold either. I was willing to gamble. I also found out that not only could my doctors give me references, but I could give them references too. When I first showed Dr. Todd the Rosenberg paper, she was so interested and excited that she practically grabbed it out of my hand and ran off to make a copy right then.
I started using the list of clinical trials from the NCI to call doctors and hospitals all over the country looking for really high dose IL-2 combined with Interferon. Most doctors or their research assistants were quite willing to talk to me, especially since I was able to describe my situation with precision and ask specific intelligent questions they could easily answer. But I wasn't finding a trial with high enough doses on the right schedule. Meanwhile, Uncle Ed "just happened" to attend a conference where Dr. Rosenberg was speaking. He asked Rosenberg about what to do for a certain patient of his, and Rosenberg told him that at the moment IL-2 + IFN was the treatment of choice as far as he was concerned and that they were getting greater than a 50% response rate. When I heard this I was really excited - that was not just a chance, but a good chance! Although I still knew that many patients who respond later relapse, this looked very good to me.
All of this - the additional tests, the searching took several weeks. Finally Dr. Todd produced a "Dear Colleague" letter advertising a trial of high dose interferon and interleukin-2 which was being conducted at six different hospitals. Later she called me and told me that she'd made an appointment for me at a hospital in New York. There was only one catch. They could not start treatment for a month. Dr. Todd told me she was not comfortable with me waiting a month. I knew she was right because in just three weeks, the "minor backache" had turned into unremitting and increasingly severe pain, and I was rapidly losing the ability to bend at the waist. My cancer was obviously progressing rapidly.
I thought maybe one of the other five hospitals might be able to take me earlier. The first three I called all said they couldn't take me for a month. Actually one said three weeks, but that wasn't much help. The City of Hope in Duarte, California said they could help me with the expense if my insurance would not cover the very considerable cost of treatment in ICU. Then I called the University of California, San Francisco. They could take me in a month. The research assistant, Michael Tasch, was very young and friendly, so perhaps this is why I asked him why it would take a month. He started reeling off a long list of tests I had to have first. But for every one I shot right back - I've just had that test. Then he said, "Can you be out here next Thursday." I knew all I had to do was say the word and my mother would get me out there on short notice, despite my condition. There was just one more catch. He had to check to see if my insurance, New York Life, would cover. He said he would call them, and that he had experience in dealing with the insurance companies. Four hours later he called to say I was approved. I was really excited.
Actually, the trial Michael Tasch told me about was not just IL-2 + IFN, but IL-2 + IFN + LAK cells, with the IL-2 and IFN at pretty high doses. This was both of the things that seemed to increase the response rate together (Despite the LAK responses not lasting). I thought it sounded really promising and agreed to it. In retrospect, I don't think this was very good judgement because there were no real data for this combination yet. Promising theories are no substitute for actual data. But sometimes one gets lucky.
My mother and I sat with doctors Fred Aronson and Michael Bar in the small white examining room at the UCSF oncology clinic. Dr. Aronson would be my attending. They seemed very friendly and open, and for a moment it was a relief from the lingering tension I'd felt with Dr. Todd as a result of our disagreement over adjuvant Interferon.
But almost the first thing they told us was that while we were on the plane, the trial we had just flown 3000 miles for had been closed. The doctors at the various hospitals had gotten together to review the data and had discovered that they were killing too many patients. My jaw literally dropped, and my mother looked like she'd just taken a punch to the stomach.
The next thing they said was that they had a Phase I trial of IL-2 + IFN that they recommended. In fact it was the same trial I'd orignally called them about. Well I knew that a Phase I trial meant that they would start with a low dose for the first cohort of patients, and use a higher dose for the next cohort, and so on, until the dose was too high. The idea was to find the highest tolerable dose for later trials. So I asked what dose cohorts were planned, and which one I would be in. Dr. Aronson told me that the planned dose cohorts were 0.4 mg/m2/dose, 0.8 mg/m 2/dose, and 1.2 mg/m2 /dose IL-2, all with the same fairly high dose of Interferon. I was also curious why they were doing a phase I trial given that I knew Rosenberg had already done a Phase I trial. It turned out that the only difference was that this trial would be using a different brand of Interferon than Rosenberg used, and this change required a separate trial even though the activity of both brands by themselves (Not combined with interferon) was well characterized in the test tube, in animals, and in humans. So there wasn't much experiment in this experiment. I thought that was good. If I could get a high enough dose, I would be getting the best known treatment.
Then he said he'd have to go check to see which cohort I'd be in. I was able to make my decision in the few minutes he was gone. Because I'd done my homework, I suspected from the previously published results and the design of the trial that the actual maximum tolerable dose would probably be the middle dose, 0.8 mg/m 2 . I also knew that patients varied widely in their tolerance. So I hoped I would be in the 1.2 mg/m2 group, and hoped I'd be also be lucky enough to be able to tolerate that high of a dose, but I thought I'd accept the 0.8 dose too. On the other hand, if they were still testing the 0.4 mg/m 2 dose that was only about a third of the usual dose of IL-2 alone, and that was not good enough - we'd have to go home and start over.
Dr. Aronson returned and told me I'd get 1.2 mg/m2 . If I was looking for a high dose trial, this was it. I would get full dose IL-2 combined with Interferon. The big risk was that I wouldn't tolerate that high a dose and that they'd have to skip so many doses that paradoxically I wouldn't get enough treatment. Intellectually, I thought it was worth taking this risk, but it was scary.
Then Dr. Aronson offered to copy the protocol document for me. I had no idea what a "protocol document" was, but soon I had a 50 page document in my hands that described every detail of the plan for the trial, and also contained a scholarly review of all of the previous results. It turns out that every clinical trial has a protocol document - if you have detailed questions about a trial you are considering, the protocol document probably has the answers. That night I read the protocol carefully. I confirmed that I really was getting a high dose. But I also learned something interesting. They were particularly concerned about neurological side effects, and they would severely reduce the dose at the first sign of neurological problems.
ICU-7: UCSF Moffat-Long Hospital
The prospect of being in ICU and the fear of not being able to tolerate enough of the treatment for it to help was positively terrifying. Chuck Yeager has described a fighter pilot's breakfast as, "a cup of black coffee and a puke." Before we went to the hospital to check in, I had half of a fighter pilot's breakfast. But for some reason, as soon as I got to my room, I began to feel strangely euphoric. I think I was relieved to finally get going. A few minutes after my first dose I had an uncontrollable shaking chill. I bet you could hear my teeth chattering in the next room. With side effects so early, I thought I was in for a hard time, but surprisingly, I continued to feel euphoric for the first three days, and had almost no side effects.
After that, the usual side effects set in. I had lots of nausea and vomiting, increasing and severe fatigue as well as fevers, low blood pressure and sometimes extravagantly elevated heart rates but I nevertheless took 13 out of 14 doses which was excellent. My reading of the protocol had helped me do this - I was constantly plied with pain medications, sleeping pills, and anti- nausea drugs all of which have a significant sedative effect. I deliberately decided to go light on all of these drugs to reduce the chance of enhancing any neurological side effects of the treatment. I didn't take any pain meds, and only once tried a sleeping pill, and I also went fairly light on the anti- emetics. I wasn't fanatic about this but I was careful. I also insisted on going for a walk around the floor once or twice a day. When I couldn't walk, I tried mild exercises in bed.
Overall, the treatment would not be anyone's idea of fun, but it wasn't even close to being unbearable. I didn't say much during treatment, but my mother stayed in my room with me for 12 hours a day, and my father and brother visited as well; just having them there really helped.
When I got out of the hospital, I thought I could bend at the waist maybe a few more degrees than when I went in, and the pain seemed just a bit less. I did not allow myself the luxury of believing that I was responding. Perhaps just being flat on my back for five days had helped. The first few days out of the hospital I was exhausted and yet I could not sleep. I was also often nauseous. But my strength improved dramatically over the next few days. My skin started to dry out, itch, and peel during this time.
Ten days later I went back for another five days of immune shock therapy and again nailed it with 13/14 doses. The side-effects were similar to the first time, but the itching and peeling afterwards were worse. Eventually every bit of my skin peeled, though just the top layer - like after a mild sunburn. The itching was horrendous though.
A few days finishing the second five days, we visited my grandparents in Palm Springs. After a half hour in the Jacuzzi, the pain vanished and stayed away for two hours. Those two hours were an incredible relief, but then the pain returned. Three weeks after treatment I was able to touch my toes and the pain was almost completely gone. I was responding.
Although I had responded, my tumors had by no means completely disappeared, so I went through two more treatment courses for a grand total of 30 days in intensive care. I slowly gained strength and hope through this period. But there is a whole other part of the story I haven't told you yet, and this may be the best part.
While I was convalescing from surgery, one of my mother's computer friends, Ellen Snyder, came over to visit her. I found out that she was into hiking, one of my passions, and that she was even a caver, another of my interests. As soon as I was able, Ellen took me on small hike to a nearby nature preserve. We found we had attitudes and feelings in common as well as interests. During my search for treatment, I did more than just read clinical papers and talk to doctors - Ellen and I spent as much time as we could together. I had always been very shy and I had never had a relationship with a woman. With my cancer, I presumed I never would and this was the thing I regretted most. So it was incredible to me that it was happening right then. Our growing relationship transported me to a whole new dimension of life and away from the horror I was experiencing. In between treatment cycles, I fell even more intensely in love with Ellen who supported me and gave me something special to live for. She came to San Francisco as my support person on my last cycle. The outcome of my treatment was very unclear on a month by month basis, sometimes there would be question marks on my scans, and once I found a swollen lymph node on my chest - but it turned out to be a result of treatment, not more cancer. After my third cycle it was time to resume my normal life, despite the uncertainty. In August 1990, I moved back to Colorado with Ellen and her then eight year old daughter, Jamie. I went back to work on August 15th, one day short of a year from the day I was diagnosed. On December 1, 1990, Ellen and I were married.
I was (and am) outraged by what I had to go through to get highly promising, lifesaving treatment. Most patients with advanced kidney cancer in 1989 did not get what I got, and did not have the chance that I had. In general only a few percent of patients ever take part in a clinical trial, and only a small fraction of those actually search for and find the best as I was fortunate enough to have done. I believed my experience put me in a special position to be able to help other patients. So I went to the medical library and read books with titles like, "Research Methods in Clinical Oncology" to deepen my knowledge of the clinical trial system, and I found out how to use computer databases, like MedLine, to search the medical literature. With this research, plus my experience, I put together a course on cancer clinical trials for other patients, but it wasn't too successful because my course was not available just when people needed it.
Then I found the Internet. After answering the same questions time and again, I developed a set of FAQ files. After a while, I realized that I could help people more if I developed a web site. So I converted my FAQ files to HTML and created CancerGuide, which I am still improving and updating.
On August 15, 1994 I went on an overnight hike to the Willow Lakes with Denver Oncologist, Dr. Paul Hamilton, and a group of patients to celebrate the 20th anniversary of the CanSurmount program. On August 16 we climbed "CanSurmount" peak. I didn't have anything to do with deciding that the trip would be to the Willow Lakes or that it would be on the 5th anniversary of my diagnosis. But so it was.
On August 5, 1996 I reached the high and remote summit of "El Diente" in Colorado's San Juan mountains after a challenging climb in perfect weather. In so doing, I completed my tour of all 54 peaks in Colorado over 14,000 feet, something I could not have even dreamed of in 1989.
Why did I live?
The only thing I can be sure improved the odds was getting the best treatment, which I fought so hard to do. But even with this, given my advanced symptoms and disease, my odds of living ten years probably did not come close to 5%. So what about the other 95%? Why did I live, when 19 in 20 did not?
The answer is an important one. The answer in three words is this: "I don't know." More strongly, and more exactly, the answer is: "I can't know." I can speculate that falling in love with Ellen gave me something to live for, and that this helped me live. It could be, but really, it is impossible to know, and the same goes for all the other intangible factors and unknown factors which represent the other 95%.
When I was first diagnosed, I stared into a yawning chasm of uncertainty. I could not bear to look, and yet neither could I avert my gaze. But now... but now... now I understand that the reasonable certainties that everyone depends on are largely an illusion, and that we exist on a field infinitely dense with rare probability and unlikely events. Sometimes the surface smoothness of everyday life parts to reveal the chaotic structure of improbability, unlikelihood, and uncertainty that is the real floor beneath our feet.
If there were no unknowns, and no uncertainties, then my diagnosis with "terminal" cancer would have had a certain result. I would certainly have died. It would have been literally hopeless. It is only from the depths of uncertainty that true hope can arise. Hope comes from the same place as fear! So now I stare into the depths of uncertainty, and come away with a new lesson. And that is: Celebrate Uncertainty! It is the source of so much of the wonder and astonishment and excitement of life as well as of the terror!
Update - July, 1998
I remain in excellent and remarkable health now nearly nine years after my original diagnosis. I have a survival curve on my wall showing the odds as they were before IL-2 was a standard treatment. I am not only off the end of the curve, I am off the page! You can see this curve for yourself in my article, "Postcards from Beyond the Zero "
On a sad note, Ellen and I were divorced in early 1997. I think that perhaps the unusual circumstances in which we came together were so different from normal life that we did not get to experience each other as we led our lives in more normal times before we got married. I do not regret having married Ellen, and am still grateful for what we had - and I still believe she helped save my life.
Perhaps you are will not be surprised to learn that we found our own way through divorce - we realized quickly that legal fighting was a very bad idea. Bad financially and bad emotionally. We rejected the system of opposing lawyers who can easily set one spouse against the other (a system mandated by "legal ethics"), and instead wrote and filed our own agreement. And we are still good friends.
Update - October 2000
The mists of false certainty have again evaporated beneath my feet, and again my life is transformed. I have become a father! I am the father of Shasta Rose born June 10, 2000. Her mother and my partner is Kristin Swihart.
I didn't know what it would be like, and admit to being scared by the thought of taking care of a baby - but so far it is a very wonderful thing. I don't know where the path is leading or what adventures are in store for Shasta, Kristin and I. We will find out!
Update - February 5th, 2002
Shasta is now a toddler and although I wouldn't have thought it possible, she actually seems to get more cute as time goes on! She is unusually verbal, speaking in sentences since about 16 months.
My health remains excellent more than 12 years since my diagnosis and I'm in great shape. I regularly run in the foothills above my house, and just two days ago, I cross country skied to a summit at 12,600' covering nearly 20 miles and gaining well over 3000 feet of elevation.
Update - August 2005
Steve Dunn died on August 19, 2005 from complications of bacterial meningitis.
This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: 1994, Last Updated: March 4, 2007