by Michael Dohan, MD

I remember so clearly as we all do when I was first diagnosed with CLL. It was on a routine physical, my first in about fifteen years. My friend and doctor called me at home that night to say there was a mistake in my blood tests, and I should have the CBC repeated the next day. The first sample he said looked like CLL. He also acknowledged that he had never had the lab mix up one patients blood for another, even though that was his current postulate. His denial was based on friendship. My denial which was to follow was based on the need to protect such a frontal assault on my own mortality. After all I had many an intellectual discussions on mortality throughout my life, and probably have written some long forgotten papers on death, dying and life as well. But clearly this was the real thing.

My next strategy was to accept the diagnosis to a degree. To my friends I had a "type of blood tumor" and then a low grade blood cancer. Cancer was hard to say. I remember being at a party at a farm house and taking a walk through the meadow with two other people. One of our threesome said "look, they put all the cancer patients together". She had breast cancer, and my other friend prostate cancer. It was after that party, that I finally accepted that I was a member of this most unwelcome club. Leukemia was a harder hurdle to overcome. It is such a hard word; full of meanness and death; it’s a direct blow.

Having accepted the words, I now how to develop a strategy. I must say the common analogy with the fight has always left me high and dry. I’ve never been a boxing fan; I don’t much care for football; and I don’t think we should settle our differences with force. But I do agree that each of us needs a mental strategy which will be multifaceted. Mine was that if I hoped enough my WBC would level off, and I could live with a little fatigue. Variants of this strategy had guided my life with some success, so it was an evidence based approach.

The anxiety this created was considerable; and with each failure (i.e. no leveling of the WBC) the anxiety increased. My wife and I met with a therapist; initially to help with her anxiety. But it became quickly apparent that it was both our anxieties. The disease marched along despite Yoga, vitamins and a more balanced life style. I sought out other individuals with CLL but found no one. I spoke to people with other malignancies; someone my age with lymphoma; someone else quite incapacitated with multiple sclerosis. Somehow none of this met my needs. I thought of but did not want to face a cancer support group.

Somehow I began exploring the Internet, and after some searching found the CLL List. My first response was less than enthusiastic as I scrolled through comments that seemed as removed from my needs, as some of my earlier contacts. But something kept me engaged. As time went on I "met" more and more people who had CLL; and as I read their messages I saw my own struggles again. In particular at that point in my illness, my major complaint was fatigue; at times overwhelming, but always restored with rest. My friends I could have shot (even though I oppose such violence) for their advice…"what do you expect at sixty, I’m tired too!" And my physician could not explain the fatigue since I was not anemic. But I was validated by many comments on the List by people describing both the same fatigue and the same response from friends and physicians. I knew now beyond a doubt the etiology of my fatigue. What followed was acceptance; a rational adjustment (it took time for this); and finally much less anxiety.

This sequence was repeated for other symptoms as well. For me the sinus symptomatolgy was another good example. And as time progressed I repeatedly found concrete help and empathetic understanding of my situation in the comments of others who asked the same questions or experienced similar problems. Anyone who ever takes high doses of prednisone should have the chance to consult a list like ours.

If the List had done nothing more than provide informed advice and understanding it would be a huge success in my book. But it did and continues to do something else. My believe in medicine is a very traditional Western civilization one; one based on an evidence- based approach. Let me see the facts. Let me see the study. Can we really know the success of a new drug without appropriate scientific testing? I do believe this is the proper approach and I don’t plan to abandon my faith in this system. But there are other layers to add to this. There is another human dimension that takes into account our hopes and fears; our attitudes; our philosophy; our relationships to our family and loved ones; our relationship to ourselves. We all know of this other dimension and experience it in different ways. Some of these include the myriad ways of alternative medicine, and we see much discussion of this on our List. Religion , both formal and informal offers adaptive ways. And a multitude of personal adaptive styles that don’t fit any category other than uniquely creative.

Somehow the List had added this other dimension. I’m not sure how it has happened. I tend to think it is a result of a large group of individuals tied together by a common illness, and tied together by a common theme; to reach out and support one another. We don’t seem to be too wrapped up in ourselves. We seem accepting of each others struggle to understand and live with CLL. We want to reach out and help another and in this way support ourselves too. The experience of reading the list, and maybe occasionally commenting is a catharsis in itself. It allows us to better accept our condition ; to cope with it; and to get on with life. To me it is also interesting that this has happened with very few specific philosophical comments. Rather it is an outgrowth of experience, and doing.

Let me finish with a short parable. A patient made an appointment with a famous consultant, and after the superb consultation the patient asked how the physician became so knowledgeable. The answer."by making so many errors." I don’t advocate making a lot of errors, but we need to explore all kinds of issues, and learn from one other, and that is what we are doing.

Copyright © 1997 Mike Dohan
This Home Page was created October 20, 1997
Most recent revision Monday, October 20, 1997

Disclaimer