Friday, November 18, 2005

Why I'm doing this blog

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 i
n 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.


Disclaimer
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.

Another disclaimer
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.

10 comments:

Anonymous said...

Did your Jewish grandmother really say you'd end up in the ER with kidney failure?

Anonymous said...

Thanks, David, for getting it right. Your messages on ACOR have always been clear in word and thought and now I look forward to checking in on your progress through this site. This will be a favorite place for me — keep at it!
Deb in Chicagoland

Jack Benton said...

David,

For the past year (since shortly after dx in 12-2004) I have been a lurker on the ACOR listserv. I have felt the need for a blog such as yours but lack the talents to do it myself. Thanks for the time and effort in producing yours. I will be an avid follower of your output.
Jack in Atlanta

Doug Cote said...

Great site David! No sense dying before your time. I find humor to be a great relief from the constant stress of knowing I have CLL! I plan to follow your blog. I loved your article in CLL topics and because of CLL topics I got smart and got a referal to John Byrd at OSU. Information is power and may save your life.

Anonymous said...

What a way with words...While you are very lighthearted with your writing you still manage to make your point and educate me, something I am very much in need of.
It is hard to learn so quickly once you are diagnosed and your writing helps make sense of it all. Thank you for your blog and continue writing. It is both enjoyable reading and educational reading at the same time.

You are a gift to those of us who have CLL just a Chaya is also.

Jenny Lou said...

Rock on David--you really tell it like it is.

pambob said...

Thanks, I'm going to be better informed, and my own advocate! I was dx May 11, 2006 CLL/SLL Stage 4

Anonymous said...

My father is dying from CLL, and in the last weeks. I am trying to find out information about what the last few days may look like, as his hemoglobin drops really really low, so I can reassure him by giving him more specific information than the generic stuff hospice tells you. He's scared it will be painful, but I think it will be confusing because of the lack of O2 in his blood. Does anyone know anything that might be helpful?

David Arenson said...

I'm very sorry to hear about your father. I think you'll get the best range of replies by posting your question on a discussion site such as CLL Forum (www.cllforum.com). There are a number of sympathetic, helpful people there.

I have had low hemoglobin (in the sixes). My guess is that he will gradually feel weaker and weaker. When it gets very low you sleep a lot and are unable to do even basic exertions such as walking up stairs, sitting up without difficulty, and so on.

Blood transfusions can be given to keep him at a more active, comfortable level; they are a common part of palliative care and I would imagine they would be considered in his case. I have never heard of a CLLer being left to die of low hemoglobin; at the end, he would probably have trouble breathing. Mental confusion might also be part of it, but I'm not an expert.

Most end-stage CLL patients die of an infection; they become so immune-weakened that they are susceptible to things most people are easily immune to.

kirsten k said...

my father is also dying of cll. I was opposed to his quitting treatment, but he chose hospice after getting the "dont burden your children" speech from numerous hospice purveyors. I am angry at hospice...and i urge anyone in the situation to think long and hard about giving up without a fight. The doctors were wrong about my dad so many times...he was like a cat with nine lives. unfortunately, he has now chosen to go out with a sputter and not a bang. Its his choice, but its horrible with bleeding gums and nosebleeds, and rude nurses no one wants to deal with. Fight hard and wise. Rituximab is your best friend. I could not talk them into arzerra.... Very sad today but going to see my dad now. I am going to miss him so much...