CLL Owner’s Manual

Would you buy a brand new car, shell out thousands of dollars, if the salesperson said the deal is that you can’t have even a stripped down version of the owner’s manual?  Would you buy lame arguments such as “this is a very high tech machine, only automobile engineers with post graduate degrees are worthy enough to have an owner’s manual”?  Or the guy gets all huffy and insulted if you insist on asking for an owner’s manual anyway? If you would not put up with this attitude when buying a car that costs a mere few thousand dollars, why would you settle for such total lack of control when your life hangs in the balance?

Unlike many solid tumors with a short fuse, CLL (“the good cancer to have” not!) is often a long protracted affair that can stretch over many years, even decades, and if you are lucky you might even die with it instead of because of it.  Half the battle in living with this frustrating cancer is coming up the learning curve - and no one has more skin in this game than you. True, most CLL patients are not trained hematologists or oncologists.  Most of your eyes will glaze over after reading the first paragraph of articles published in professional journals, unless you happen to be an information addict like me. I have been a card carrying science geek from way back when.

I want to let you in on a little secret:  the medical jargon that patients find so intimidating is just that - jargon.  Plumbers have their jargon, accountants and engineers have theirs, doctors’ jargon is no different.  It is a short hand way that the members of the club talk to each other, because they all know what the jargon means, it saves time and it makes for efficient communication.  It also has the added benefit of shutting out riff-raff like you and me, cloaking often very simple concepts in awe inspiring mystery.  In reality, it is often nothing more than the ‘secret handshake’ you must know before you are a full fledged member of these exclusive clubs.

How do we get past the jargon hurdle and access the information we need to participate in our own healthcare? Perhaps it is a “Best practices” review article that discusses how patients should be protected against opportunistic infections.  Or it is a hot-off-the-press article that describes the results of a recent clinical trial. Is this information that you have a need to know? You bet!  How can you make therapy choices if you do not know how the latest clinical trial panned out? How can you protect yourself against opportunistic infections and / or secondary cancers if you don’t know what to watch out for? What if you are not fortunate in having a truly up to speed local oncologist watching out for you?

This is where CLL Topics comes in. We take these important papers, strip them clean of jargon, translate the medicalese into English, throw in a few everyday analogies to make the concepts easier to understand, a little snarky humor and attitude that we hope will make you giggle and reading the stuff a tad less boring - and there you have it:  medical information that is accessible to anyone who is willing to make the effort to understand. I am not saying it is easy, but it can be done if I do my job right and you do your part.  I must say CLL patients are among the most motivated students I have ever come across.  I guess having one’s life on the line lights a fire under even the most lazy couch potatos.

Sometimes the concepts are difficult, I have to admit. The level of complexity may indeed require hematology training to get every last nuance. But that is not often the case, and even when it is, most of the time we as patients do not need to get every last smidgen of detail anyway.  What we need is useful stuff that helps us live longer, make better therapy choices, participate in our own health care - you know, good enough for government work as they say.

That is exactly what I aim for, information that is usable by patients.  When stuff gets too complex, I will shamelessly over-simplify it.  But I will tell you that is what I am doing, so you are warned you are getting the cartoon version of the story.  We will make sure we cite professional sources on which we base our reviews, we will attach article abstracts and links to full text articles where they are available to the general public.  You decide at what level you want to participate.  Cartoon version is just right for some, others may want to explore the full length professional articles we cite.  Different strokes for different folks, and that is just fine with me.

I am not a trained hematologist or oncologist, and I cannot give you medical advice. I am merely the reporter, the translator of medical information.  The research I report on is not mine, the conclusions I highlight are reached by the experts that wrote the paper, not me.  Except in clearly identified Editorial sections where I get to preach from the soap box, the information comes from experts. Do I influence the message by my “voice”, by what I chose to review, by the bias I bring to the table? There is no way of avoiding that, I would not be human if I was able to keep every bit of my own personality out of it.  This is something that you must remember as you read my articles and judge their value to you.

I plan to write frequently on “CLL Topics Updates”.  Some of my articles will be short affairs, while others will be longer, depending on the subject.  I will apologize ahead of time for being long-winded. I encourage your participation with your comments, but please remember to stay on topic.  The discussions will be that much more interesting if we do not morph into a social club exchanging vacation stories or pictures of our grand-kids.  I will jump into the discussion with my two cents if I have something useful to say.  You can also write to me offline if that works better for you. 

As a recent member email pointed out, most of us can no longer look to our elders / parents to kiss and make it all better - heck, we are the elders and parents worrying about our kids and familial CLL - and we had better get serious about taking care of ourselves. I am looking forward to this new project.  I hope you are too.  If we get the kind of grassroots support from the patient community that I am hoping for, I think it will be a success.

Be well,
Chaya