I read somewhere that there are 1.5 million blogs on blogspot.com alone. Sometimes the blogosphere reminds me of the stereotypical mental hospital in which every patient stands alone in a padded cell, shouting. I don’t know if anyone is listening, but I need to shout.
I am a writer, partially by trade and always by inclination. It comes as naturally to me as any obsessive habit comes to anyone. If I have a talent, this is it. They say to write what you know, and I have chronic lymphocytic leukemia, so I have shelved my plans to pen a mystery novel about a man who inherits a seedy motel, and I am writing about this instead.
I have thought about doing some sort of CLL website for a long time. At first I was going to do something just for newbies, to help them get past the shock and awe stage, give them some gentle guidance, some tools to hold up the sky that seems to be falling. You will indeed find some of that here. But I have now entered my CLL adulthood, as it were. I am in the learning-to-live-with-it-and-get-on-with-life stage. New challenges, a slightly different reality. That, too, will be part of this story.
I have never deluded myself into thinking that there needs to be another site trying to keep up on the science of it all; CLL Topics (see "Links") does that better than anyone. Blindfolded and dancing backwards in high heels, Topics science writer Chaya Venkat can still run circles around most people, including some of our fabled Consortium doctors, and that is the site you should visit if you want the facts, ma’am or man.
What there is not, in our little CLL community, is a site with a more reflective bent, a place where someone offers freewheeling commentary on the whole scope of what it means to have leukemia: the choices one faces, the foibles of the medical establishment, the pain in the ass it all is, and the cosmic messages that might occasionally be found in it. This is where I might have something to say. Think of me as a cross between Mark Twain and Michael Moore and the crazy cat lady on The Simpsons.
There are things I will say here that I cannot say in places such as the ACOR list, which is the internet community meeting room for some 2000 CLL patients and their families. ACOR contains a broad swath of people, including myself, each of whom is dealing with an emotionally difficult issue. Our common disease masks our many social, cultural, and political differences. So, in order to function best, ACOR is bound by a set of rules: No politics, no religion, no getting too far off the subject, no gratuitous humor, and no cursing. One must also sometimes tread very lightly when posting there, since cancer and death and its prospect are understandably sensitive subjects (see “Another Disclaimer,” below).
ACOR's restrictions allow people to share their CLL experiences in a generally supportive environment geared largely to medical issues. But the rules also tend to discourage a broader, more unbuttoned commentary, and life is not always best described in polite or politically correct terms. ACOR is good at what it does, but it does not pretend to do everything, nor can it. I will continue to post there, but there are times when I just want to shout from the comfort of my padded cell, or mumble and throw cats. So I will do that here.
One of the silver linings in being diagnosed with a potentially fatal disease is that one feels a little freer to call it as one sees it. If you can get something out of this blog, if it shines a little light on your experience, maybe gives you something to laugh about once in a while, or something to think about, then good. I may not always agree with your outlook, and you may not always agree with mine, but I know that we are brothers and sisters in the struggle.
I am not a doctor and I do not play one on the internet. If you feel compelled to take something I say as medical advice, that is your business. If you end up dying as a result, then perhaps in your next life you will be careful not to believe everything you read on the internet.
I know what this disease is like. It can be frightening at times, disappointing, depressing, terrifying. The comments in this blog are sometimes lighthearted compared to the situation, they find humor, sometimes black humor, where one sometimes does not feel like laughing. I understand what you may be going through, I respect where you may be at the moment. What you read here are my thoughts on any given day, at any given time. They do not take away from, or denigrate, or otherwise deny what the disease means to you. It is serious shit. I know that, always.
Monoclonal B-Cell Lymphocytosis: A precursor to CLL (chronic lymphocytic leukemia) - This week I'm posting on the CLL Society website an interview that took place at ASH 2016 with Dr. Neil Kay from the Mayo Clinic in Rochester, MN where we...
3 days ago