California Bad Dreamin'
Home Up Ralph's Story Long Term Remission Smooth Sailing Quick Recovery Didn't Fit the Profile Problems with 2-CdA Complete Remission No Good Deed Goes Unpunished A Woman's Faith California Bad Dreamin' Misdiagnosis 25 Years Remission Successful Treatment 3 Months to Remission

 

Submissions to "Patients' Stories" cannot be verified for their accuracy.  They do not necessarily represent validated medical research.  The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Research Foundation.

In 1986, I was living in Poway, California (as I write this in October 2007, the town has been evacuated due to the terrible wildfires raging there), in excellent physical condition, running about 12 miles a week, eating healthful foods, no drinking, no smoking. I was in better shape than I’d ever been. A general physical by my primary care doctor, in December of that year, showed me to be a very healthy 34 year old male with totally normal blood counts across the board. A little over a year later, I was gaining weight and found myself easily fatigued by even the slightest exertion. I chalked that up to the long hours I'd been working. I also had a lot of bruises, something I attributed to doing physical labor, always bumping my shins and arms while installing the custom cabinets and furniture that I built. One day in June, I came home, having had a stomach ache all day long. My family and I were to attend a pool party that evening, but I stayed home lying on the couch. When my wife and daughters returned home, I had a fever, so we dropped the kids off at the neighbor’s and went to the urgent care clinic.  The physician on duty prodded, probed, had x-rays and blood samples taken. After the test results were in, he came into the room with a very concerned look on his face, and said he was sending me immediately to the hospital for more tests, and that he thought I had some type of leukemia. 

The tests at the hospital, including a bone marrow biopsy which was a dry tap (common with HCL), showed that I had Hairy Cell, and that my spleen was very enlarged - a gross splenomegaly, in medicalspeak - and needed to be removed. I had one half the volume of blood in my system than normal, so I was started on a transfusion right away, and necessary before a splenectomy could be performed. Before I went into the operating room, my surgeon told me that I had a 50/50 chance of coming out alive, and that they needed to keep the operation under 60 minutes, to achieve the desired outcome. They did the job with 10 minutes to spare. My removed spleen weighed 18 pounds, 13 pounds after being drained of blood. I carried that around for months, and believe you me, I experienced all the unpleasant symptoms of being pregnant, with none of the pleasant ones whatsoever! So ladies, you have my utmost sympathies and admiration, especially when you voluntarily do it all over again! Men are such wimps... After I’d left intensive care, my assigned oncologist came to talk with me. He told me that there were few treatment options, the only two being Pentostatin and Interferon, and that the results were inconsistent. He also told me I might live another 5 years.

Fast forward a couple of months, after a summer of post-surgery painkillers, Bartle & James wine coolers, discovering Breyers Ice Cream, and some really good music (hearing Tracy Chapman’s 1st album still recalls the good feeling of being zoned out on percocets with a big bowl of chocolate ice cream in front of me!). I attended a Leukemia Society support group. A woman there told me about her doctor, Lawrence Piro of Scripps Clinic. She told me he saved her life, and suggested strongly that I go see him. It turned out his office was in the same building as the urgent care center, only 2 miles from my home. I made an appointment, and Dr. Piro told me about the study that he was heading up, the first study using 2Cda for treatment of HCL. It had only been tested on CLL patients up to that time. To back track a bit, since being diagnosed with HCL, my health insurance had changed, and I was shuttled from clinic-to-clinic for a while, I had seen five different oncologists during that time. I told each one of those five that I was planning on signing up for Dr. Piro’s study, and every single one said not to, that it was too radical, too experimental. I told them where to put their opinions. 

In January of 1989 I checked into Scripps Clinic in La Jolla for a ten day visit to receive 2Cda. I had a private room, and if I went to the window and craned my neck, I almost see the golf course, and ocean beyond it. I’d brought along one of my guitars, the “Hitchhiker’s Guide To The Galaxy” series of books by Douglas Adams, and the nurses station had a freezer with a good stock of Fudgesicles, so I was happy. The only other patients that were receiving 2Cda at that time, were a couple of elderly gentleman that had CLL. I played gin rummy with them, and we talked about how great it was to have Dr. Piro on our side. Monthly testing for the next 18 months showed that the HCL had gone into remission. At least two of my previous oncologists ate their words, with one referring to 2Cda as “Piro’s Magic Juice”, while slapping his thigh with delight! 

In 1991 we moved to the San Juan Islands, in Washington State, to get out of the rat race of busy Southern California. That was the beginning of my real healing, which is a whole story unto itself. In October of 2000, just shy of a 12 year remission, I received my 2nd round of 2Cda, at Virginia Mason Clinic in Seattle. I found out then, that the drug I was the 8th in the world to receive, was now the treatment of choice for Hairy Cell Leukemia. My 2nd remission is now headed into its 8th year. In 2002, I moved back to my home state of Michigan, and started living my life the way I should’ve been living it all along. I don’t plan on anymore recurrences of HCL, I feel that it was a message for me to turn my life around (along with some other equally nasty, but different messages), and that I’m now living a life of harmony with myself, and the universe. I released a CD of original songs in June 2007. Songs which convey my spiritual philosophy, as well as the sense of humor that I’ve gained over the years of an ‘interesting’ life. I'm planning on traveling around the country and performing my songs for any group that is interested in hearing my music, which I believe has some healing properties of its own! Please contact me at jcswayzee@comcast.net, and visit my web site http://spirityard.com.

Michael J. “Mickey” Richard
Ypsilanti, Michigan

October 25, 2007