Thursday, August 30, 2007

My friend Kurt

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 canno
t 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 ponderin
g 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 ho
w 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 fe
lt 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 be
ast 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 fo
r 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 ther
e is a There there, Kurt, save a seat for me.

11 comments:

Anonymous said...

I never found Kurt's posts to be too long. He did grab hold of a topic and wouldn't let go until he got a straight answer. If he didn't understand or wanted to make a point, he persisted until he understood or got his questions answered or made his point.

I was unaware of Kurt's acting past, but it didn't surprise me. I spoke with him on the phone once, and corresponded with him for a while, since I found his ideas interesting, especially his idea of chlorambucil and rituxan.

And so, we lose another hero to CLL. Again and again, loss after loss.

Are we doing enough to end this sad state of affairs? No? That's right, we're not. Instead, the amount of money being spent on cancer research is going downhill; not even staying steady.

I understand the demands on the treasury, especially our war against terrorism. But isn't the equally desperate war against rouge cells as important? Cancer kills more Americans every year than the total number killed in all of World War II. Did you know that?

Anonymous said...

I am sorry for your loss.
Kurt sounded like an amazing human.
Carlin

Jud said...

The BMW 8 Series community is saddened to hear of Kurt's passing. Kurt owned a 1991 BMW 850i --- and enjoyed discussing this wonderful vehicle in various forums since 1999.

A tribute thread is in progress via the primary forum Kurt participated in until April 2005:

http://bimmer.roadfly.com/bmw/forums/e31/8595172-1.html

Anonymous said...

Thanks, David, for giving a fine tribute to our warrior, Kurt.

David C. said...

In the best Kurt tradition this will be a loooong post :-)

I was really sad to hear that Kurt passed away. Kurt and I shared an enjoyment of our Calypso Red BMW 850s. He kept saying he was going to go to Europe and bring home the European version of the BMW 850CSi.

What was doubly frustrating about following Kurt's struggles with the disease is that I worked for a company developing a treatment for it:

"CellPro Inc. (Bothell, WA) and the Fred Hutchinson Cancer Research Center (Seattle, WA) have begun a pilot clinical trial in patients with chronic lymphocytic leukemia (CLL). The study is designed to demonstrate that CellPro‘s Ceprate SC (stem cell concentration system) can positively select CD34 antigen-expressing stem cells from peripheral blood and also results in significant depletion of tumor cells from the resulting stem cell transplant. Primary objectives of the 15-patient pilot trial are to evaluate the product‘s ability to purge CLL cells from the peripheral blood stem cell (PBSC) graft and to evaluate engraftment after PBSC transplantation. The CD34 antigen is a surface marker for the hemotopoietic (blood-forming) stem and early progenitor cells essential to posttranspalant engraftment in the bone marrow and renewal of the immune and blood systems. Because the antigen is believed not to be expressed on malignant leukemia cells, or their potential precursors, positive selection of CD34+ stem cells should result in a significant depletion of tumor cells from the PBSC population."

But we were put out of business due to loss of a patent infringement lawsuit to Baxter (who had their own system) and others. The jury sided with us but the judge overturned it. So a promising treatment became unavailable.

I've hated Baxter to this day for what they did and that the Ceprate system might have been able to help Kurt.

Sadly my hard drive failed about two years ago and I lost his e-mails, photos, and e-mail address. And now we've lost Kurt.

Neither of us stayed as involved in the 850 board due to family issues, as it should be. Cars, no matter how special they might be to us, are just cars. But I am glad we shared that interest otherwise I might not have met him. I like intersting characters and Kurt was definately that. I remember how scandalized several of the members of the 850 board were when he talked about doing burnouts and his whimsical accounts of trying to track down the quirks of the car were always entertaining.

Kurt thanks for the laughs and even the sorrow of your passing.

Thank you David for your entry about him.

Vaya Con Dios Kurt

Anonymous said...

The above post sounds like an autologous stem cell transplant. These transplants have fallen out of favor; with autologous transplants there cannot be a graft versus leukemia effect as is possible in an allogenic transplant (a transplant from a donor).

Kurt, you had a lot of friends and a life most of us never knew about. Godspeed, Kurt.

Stan said...

I, too, met Kurt through the BMW 8 Series community. Kurt was a very dynamic and (of course) vocal member of our group for many years. He was such a hearty soul that we where all quite dismayed when he relayed his health status to us. At that time, he thought he was not long for this world. We were also in the process of setting up a large gathering of our members in Mendocino county. The weekend event was the largest gathering of 8 series BMW's in the world. We knew that Kurt was unable to attend in person (but was there in spirit), and for Saturday nite's event, I presented an Academy Award type spoof honoring Kurt. That was back in 2003.

Obviously, Kurt was as strong and as stubborn as we knew him to be. He always maintained (at least to us) that he'd lick this, although we knew from the decline in his communications that life was getting rougher. There's no question that he fought the good fight, and I'll always consider him a winner.

With an odd sense of synchronicity, I was actually thinking about Kurt last weekend, wondering how he was fairing. This news comes not with shock, but with a sad realization. We all knew that this day would come for our Hollywood "legend", I just wish for one more e-mail volley with him.

Kurt, we'll miss you.

Anonymous said...

Hi,

I just wanted to say that I am an
old friend of Kurt's and he was a wonderful generous human being.

I knew him when he was doing commericals and doing T.V..For
some reason I just decided to Google his name and your website came up. I was very sad to hear that he had passed away.

I hope Kurt is at peace and knows
that he is thought of often.

Karen Markovich

Anonymous said...

Thank you for writing about Kurt. He was my favorite cousin--hands down. I found your post by accident. Thank you for speaking the details of Kurt's situation much more clearly than he let us know.

You seem like a very nice person. Thank you for being Kurt's friend.

Good luck with your situation.

Ronda

Anonymous said...

Kurt, I've found you again! You should understand that you've touched many a life... your memory bold and alive! Kurt and I fell into exceedingly long emails for a number of years before we lost touch. His ability to write incessantly was only matched by my ability to reciprocate.

We posted on the 850 board, and eventually emailed directly, debating, musing, philosophizing and doing all the things that add richness and texture to life. He was a great mind... Always armed with an opinion, I plan to reread the mounds of material he has left me in cyberspace, as his guidance and wisdom is yet another gift I have failed to appreciate until now. Then again, I think he knew that would happen as well!

Thanks for the perspective Kurt, we all miss you,

Loren

ReginaM said...

Saw Kurt on a rerun last weekend and decided to Google and see what was going on with him.

We met quite a few years ago when I was attending UCLA and living in Westwood. He was a great guy and I have nothing but fond memories.

I am so very saddened to hear that he has died. So very saddened.

Regina