One of the few good things about chronic lymphocytic leukemia is becoming friends with other patients, and one of the worst things about it is seeing friends die of it. Kurt Grayson was a friend of mine who died this week of complications stemming from his CLL.
Kurt and I led very different lives before our diagnoses. Kurt had a career in Hollywood as an actor in movies and television. He had money, too, and a big house in the San Diego foothills replete with luxury and sports cars. For a time he lived life in the fast lane, both literally and figuratively. Not long after his diagnosis, which was around eight years ago, he lost everything in one of those California wildfires we see on the news from time to time. He moved north to Sacramento to care for his elderly parents and he became active on the ACOR CLL list and other internet discussion groups.
It was there, through his posts, that I met him. Kurt was a bit of a character, which I liked, as I suppose it takes one to know one. We found that we had certain things in common, including a questioning attitude toward the conventional wisdom. We also shared senses of humor and to a great extent outlooks on life. Kurt was not traditionally religious and neither am I. Our politics were similar. When it came to internet discussions, we both favored free and open approaches.
This kept Kurt in conflict, sometimes, with the ACOR list managers. Yes, Kurt could go on too long, and yes he was passionate in his views. Before Dr. Terry Hamblin arrived on the list and lent his credibility to the treatment protocol of chlorambucil plus Rituxan, Kurt was there urging people to consider it. It had, in fact, worked for him, buying him a remission of three or four years before he became refractory to it.
Kurt once told me the story of his visit to UC San Diego shortly after diagnosis. Dr. Thomas Kipps looked him over and said he’d be dead within a year if he didn’t start big-gun chemotherapy ASAP. Kurt proved Dr. Kipps wrong.
But one cannot cheat the disease forever, and it was finding a second act to follow the first that proved impossible. Kurt relied heavily on the internet. He became friendly with any number of doctors and patients and he consulted them from time to time. As so many of us have learned, advice about what to do with CLL is often contradictory. Kurt was always casting about for suggestions and weighing the pros and cons. Unfortunately, as time went on, his health worsened. And Kurt, focused as he was on caring for his parents, had not developed an in-person relationship with a CLL expert doctor and never found the time to venture to a CLL center for a workup.
In February 2006, Kurt and I, along with Steve Madden, Denise England, and Jenny Lou Park -- three other people of whom I have grown increasingly fond -- founded CLL Forum. Kurt was a moderator there but he didn’t get to spend much time on the job. His symptoms became acute and unusual; fluid would build up in his lungs and had to be drained. His spleen and liver were enlarged, and tumors of some kind were found on the liver. The old chlorambucil plus Rituxan, which had worked so well for awhile, ceased to be effective. Infections and pneumonia were a further problem. Kurt was in and out of the hospital.
This year, Kurt settled on FCR as a next step in therapy. By then his spleen had become huge, 32 cm in length. The drugs had no effect. Kurt became confined to a wheelchair.
About two months ago Kurt was pondering what to do as he was growing progressively weaker. He visited a CLL doctor at Stanford who told him, flat out, that he was dying. This shook Kurt up, as it would any of us. The doctor had few answers and suggested that Kurt go to UC San Diego or MD Anderson. Kurt had also been in touch with Dr. Richard Furman of the Weill Cornell Medical College at New York Presbyterian Hospital, who posts to a CLL discussion group on Yahoo. Furman was evincing an interest in Kurt’s case.
This is the situation as I found it when I gave Kurt a call. We had a long conversation about his options and about life and death. It is odd how we patients can become comfortable talking about things that make our healthy counterparts squirm; it comes with the territory of being in this battle together and facing what we face.
Kurt knew that he had to do something and was thinking of traveling to New York to be treated under Furman’s guidance. I supported this idea because I felt Kurt had a doctor who seemed to be interested in him and whom Kurt liked. Not every doctor wants to take on a difficult case. Kurt had to throw in his lot with someone and take action soon, before it was too late. It was the path of hope, however narrow.
And so Kurt went. Unfortunately, he had reached the point where his body simply began to shut down. He developed sepsis, followed by respiratory complications that required intubation, and then liver failure.
I write all this because it is the story of Kurt as I knew him and I don’t think Kurt would mind. He was always willing to share his experiences, for at his core he had a genuine desire to help other people so that we can all find a way out of this CLL mess.
(Kurt’s story is a reminder of the gravity of progressing CLL as I approach, on September 3, the fourth anniversary of my diagnosis. That makes it the start of my fifth year with the disease (five being the official count; my theory based on 1996 blood work is that this may actually be the start of my 12th year). Time, and CLL, marches on. I am not doing as well today as I was four years ago. Four years from now I will not be doing very well at all without some major intervention. Such is the nature of the beast we face, those of us who are not blessed with an indolent version of “the good cancer.”)
CLL consumed much of Kurt’s attention in the years I knew him. The old days of fast living were long gone; the fire in San Diego was a metaphor for the change in his life, for he had lost all his movie and TV stills and other memorabilia when his house burned down. Kurt seldom talked about the past, although he did once recall with some satisfaction playing strip poker with Farrah Fawcett during a break in shooting an episode of Charlie’s Angels.
The change in his life did not alter Kurt’s generous ways, however. He insisted on treating me and Marilyn to dinner in absentia when we went to UC San Diego to see Dr. Januario Castro last May. I declined, saying I appreciated the thought, but that I’d rather he save it for when we finally got to Sacramento to see him. A month later, when we set out to see Dr. John Byrd at Ohio State, Kurt again offered to buy us dinner. This time I felt it would be rude to refuse. Kurt liked to buy dinners for people, he explained, even if he could not attend. He had recently spent lavishly on a night out for a group of oncologists and their guests. And so we accepted a monetary gift, which was large enough to buy us a couple of nice meals.
We toasted Kurt then and I toast him today: Here’s to a kind-hearted man who approached his disease with determination and good humor, who reached out to others, and who touched many lives in the process.
We will not dine together here, but if there is a There there, Kurt, save a seat for me.
I've go to admit it's getting better: More good news about my CLL (chronic lymphocytic leukemia) - Most of my blog posts can be followed here. The full story of my CAR-T therapy, the incredible rollercoaster and the amazing results can be found there I...
4 weeks ago