“You have a lymphoproliferative disorder,” the doctor told me. I had no idea what that meant, and the doctor knew it. He was just beginning to break the news to me gently, and I guess that was the approach that worked best for him.
As the story unfolded, it became clear that my depressed iron level noted at a recent blood drive had nothing to do with poor diet as I had naively surmised. I won’t pretend to remember everything that Dr. Telder * said at that meeting, but I clearly remember a few words, like “malignancy” and “leukemia,” and a few pieces of advice, like “Make sure your health insurance and life insurance policies are paid up.” Mostly, I remember thinking about my then two-year-old daughter and seven-year-old son growing up without a father and my wife having to support and raise them and explain what happened to Daddy all by herself. “This can’t be real,” I thought. “I’m only 38; how can I have cancer?” It was very real indeed.
The doctor had a little encouraging news by our next meeting two weeks later. He had completed his diagnostic tests and explained that I had Hairy Cell Leukemia, a rare form of the disease. It could have been worse, since HCL progresses relatively slowly. “I’ve seen people with HCL live for ten years,” he told me. To keep me alive would require major surgery — a splenectomy. That might buy me a few years of relatively trouble-free life. Then I might start on a drug called Interferon which would manage the illness but not cure it. Interferon comes with side effects such as periodic flu-like symptoms and loss of mental-concentration abilities. “There is no cure,” the doctor cautioned. “What we want to do is lessen the severity and slow down the progress of the leukemia.”
In the meantime my already compromised immune system would deteriorate further, my constant fatigue would get worse, and I might eventually be susceptible to spontaneous external and internal bleeding.
Just eighteen months later, things were quite different. I was running 2 1/2 miles nearly every morning. Back then, I had difficulty walking two flights of stairs. I was working full eight-hour days. I could have easily worked more, but I didn’t, because I wanted to spend time with my kids. One thing my experience taught me is how important it was to spend time with them. Just a year earlier, I could hardly stay awake for eight hours without a nap. My immune system was as capable as it ever was, and spontaneous bleeding was no longer a threat. There was simply no evidence of cancer to be found in my body. Now, 26 years later, I remain cancer-free.
You see, despite Dr. Telder’s predictions, I was by all indications cured of my incurable disease. The doctor was simply unaware of the latest developments in the treatment of HCL. He did not know about two recent treatments that were much more effective than his antiquated treatment proposal of splenectomy followed by Interferon.
How did I learn about the two newer and better treatments? Almost on a whim, I went to a local library — the internet didn’t quite exist yet — to research and learn about my illness. It didn’t take too long to follow a reference in The Wall Street Journal to an article in the venerable New England Journal of Medicine about a new and very promising treatment specifically for Hairy Cell Leukemia. That article also outlined another treatment with good results being offered at Sloan Kettering Cancer Center in New York.
The treatment that I chose was developed and administered at Scripps Clinic and Research Foundation in La Jolla, California. The treatment, a chemotherapy agent called 2-chlorodeoxyadenosine (2-CDA), involved a seven-day intravenous infusion. While the drug had short-term side effects like nausea, fever, and flu-like symptoms, there are no known long-term side effects. Three weeks after the treatment, I returned from California to my home in Rhode Island able to carry on my life, albeit on an abbreviated schedule. Two months after my return I was working full-time, exercising for the first time in years, and feeling like a new person. Had I not set out to find information on my own, had I not been assertive in seeking and getting the best treatment available, the prognosis offered by Dr. Telder would have been fulfilled.
After my life-saving treatment, the thought that kept gnawing at me was: How can this be? How could my well-regarded oncologist not have known about two treatments that could have been life-saving, and by all indication were far superior to the treatment he was proposing? How could it be that while in treatment, the medical staff told me that over half of those participating in the clinical trial that saved my life, and the lives of many others, had learned about it as I did — through their own research or that of friends or family? Aren’t doctors required to know the latest treatment available that might benefit their patients?
The answer is no. That’s why I started Schine Online Services — to help people with serious illnesses find the best and latest treatment possibilities that may quite literally save their lives.
For the years since then I have been researching treatments and producing comprehensive reports for those suffering with cancer and other serious illnesses throughout the world.
However, my reports had one drawback. They were current to the day they were compiled. What if a new life-saving treatment was reported the month, week, or even day after I submitted my report to my client?
With the help of a skilled software developer, we recently solved that problem. We created Treatment Weekly Update (TWU). TWU automatically checks for treatment updates for each of our client’s specific illnesses each week. Every new clinical trial, research report, or update to a previously reported treatment development is reported to our clients within a few days of when it is announced. Each update report is specific to a client’s particular situation.
Every person with a serious illness has the responsibility to be informed about that illness and its treatment options. The seriously ill patient must take responsibility for doing all he or she can to prolong his or her life and strive for the best quality of life possible. As my experience and those of so many others shows, relying solely on one’s doctor will not always be adequate. It takes some research, study, and assertiveness to ensure that you know what the choices are and how to make those choices based on the best information possible.
Clearly, my own efforts resulted in a home run; I found a cure for an illness that was supposed to be debilitating and fatal. In my case (at least in retrospect) it was all black and white; there was a bad choice and a much better choice. Not everyone with a serious illness will be so fortunate or have choices so clearly contrasted as I did. However, many patients will have choices as to how to battle their illness. To know how to make the best choices, indeed to know what the choices are, you need to become informed. You need also to use that information to derive the power you will need to give yourself the best chance possible.
* The name “Dr. Telder” is fictitious. Any resemblance to any person’s actual name is unintended and coincidental.