Joe passed away in late November 2014. It is always hard to receive this kind of news. In his story Joe refers to us as “angels”. Well Joe, you’ve got your own wings now. Look in on us from time to time. We send our love to the Elliott family.
Look in on us from time to time. We send our love to the Elliott family.
“And so it was that I became a member of a club that I did not want to become a member of…The Cancer Club. Believe me, this is not the ‘best one to have’. No cancer is the best one to have, and no one wants to be a member of this club.”
My journey into the world of cancer began in the fall of 2005. While excitedly looking forward to my upcoming retirement, I, unfortunately, had a string of bad luck earlier that summer. It started with a double hernia operation, followed by an upper respiratory/sinus infection that just wouldn’t go away, next on deck was a massive gout attack, and finally a case of facial shingles, all to someone who had been healthy, fit, and strong his whole life. I felt like Job!! After all of this, my primary physician called with the results of a blood test and wanted to know if I had had an infection recently because my labs showed a high white count with 72% lymphocytes. I reminded him of everything I had gone through the last four months, but he was concerned. I still had a lingering cough from the upper respiratory infection so he wanted me to have a chest X-ray. The radiologist saw a huge lymph node in my chest, suggested it could be CLL (Chronic Lymphocytic Leukemia) and a biopsy was ordered.
The day after Christmas 2005, the surgeon called and said the biopsy had come back positive for lymphoma. My wife, Crystal, and I were completely in shock. I can remember sitting at the kitchen table and bawling like a five-year-old. How could this be happening to me? I was an outdoorsman, liked to hike and sail, go for long walks in the hills with our dogs. My body has always been so strong and done right by me, I thought. The news just hit us out of the blue and we were in shock. A second opinion from a lab in the Los Angeles area determined the biopsy sample to be Chronic Lymphocytic Leukemia (CLL). “It’s probably not a death sentence,” Dr. Chavez told me. After our initial meeting with the local oncologist, he went on to tell me that, “if you’ve got to have cancer, this is the best one to have.” And so it was that I became a member of a club that I did not want to become a member of…The Cancer Club. Believe me, this is not the “best one to have.” No cancer is the best one to have, and no one wants to be a member of this club.
I was under the “Watch, Wait, and Worry” protocol for the first two years after diagnosis. I had blood draws every three months and watched (and worried) as my white count continued to climb. During this time, Crystal went into “research mode” and found renowned CLL specialist Dr. Thomas J. Kipps at the Moores Cancer Center at the University of California, San Diego. He is the Director of the CLL Research Consortium. Crystal emailed Dr. Kipps and asked if he would be willing to take me on as his patient. He personally replied and said he would be happy to meet us and look at my case.
So off we went on our 10 hour drive for a consultation on a warm October afternoon–down to San Diego in my 200-thousand-mile 1996 Ford pickup: Reno to Bishop, California; Bishop to Kramer Junction where we broke down. It was 5:30 pm. Kramer Junction (also known as “Four Corners”) is located in the Mojave Desert and it is a desolate, weird place, and there is nothing but gas, food, and truckers there. Nothing was open on a Sunday evening, but we were able to get a tow truck via AAA, but the tow was only good for five miles. So we paid the driver $150 cash to take us to Hesperia, CA. The Kragen Auto Parts store there was staying open specifically for us because they had the part I needed to fix my truck. My wife rode with our little Cocker Spaniel, Lindy, in the pickup perched on top of the tow truck. The young man at the Kragen store helped me install the part. I was having difficulty getting my arms into the engine compartment because they were so swollen from where I had been stung by wasps the day before. I’ll never forget how weak and tired I was and still have no idea how we finally arrived in San Diego at 3am. Obviously, there were angels all around us coming to our aid.
We met with Dr. Kipps and his case manager, Sheila Hoff, the next day. She seemed concerned with the swelling and redness on my arms. I told her I’d been stung by a bunch of wasps before coming down and it was just a little irritation. We met with Dr. Kipps and he was quite pleasant. Crystal had made reservations for us at the La Jolla Playhouse for that evening. Dr. Kipps came back into the exam room and laid his hand gently on my shoulder and said, “I know you have plans for the theater, but I am afraid you are going to the emergency room.” Once again we were in shock. “Your white count is 293,000, your platelet count is 4000 and you have a cellulitis infection in your arms and it is spreading.” He continued, “This is life threatening. It is a perfect storm.” So off to the emergency ward and bags of vancomyicin. Angels again.
Two months later, I started chemotherapy. There were many trips to San Diego, but in the end the treatment only suppressed the CLL for about 18 months. When additional treatment was looming, Dr. Kipps suggested a clinical trial called R+R (Revlimid and Rituximab). I decided to go into a clinical trial because I wanted to contribute something toward the research and science of the blood cancers.
The travel to and from San Diego and hotel stays were melting our plastic credit cards. Then we found Lazarex Cancer Foundation. The financial help they have so generously given us has allowed me to continue with the clinical and, without the help of Lazarex, I would not have been able to finish the clinical trial. Believe me, if either Crystal or I were to ever hit the Lotto, we’d be forking over a big part of the win to Lazarex. We’d also be giving a big boost to Dr. Kipps’ personal research lab.
The people at Lazarex –those we know and those we’ve never met—you are what make Lazarex what it is. You are our angels. You are all role models for the best of what human beings can be. I believe I am somewhat of an expert in this area because I taught Humanities at the maximum security prison in Nevada for 25 years. Thank you, all of you at Lazarex, for all that you have done for Crystal and me.