Sunday, November 19, 2006

First blogiversary

Yesterday marked the first anniversary of CLL Diary. One year and 57 posts later, I am amazed that I still have anything to say.

When I started this blog I didn’t know how it was going to work out. I figured I would just tell my story as I went along, pretty much stick to the subject of chronic lymphocytic leukemia, and let it go from there.

I am pleased with the response I have gotten. I know the blog has been useful to many of you, both from your comments here and in private e-mails. (It has also occasionally annoyed somebody, but what good would it be if it pleased everybody all the time?) There have been more than 15,000 visits to CLL Diary during the past year, and the number has increased steadily over time.

One effect this
blog had was to inspire others to take the plunge into the blogosphere, most notably Dr. Terry Hamblin, whose Mutations of Mortality is a must-read for CLL patients. My friend Steve Madden also started his own blog, then went on to found CLL Forum, so he can be forgiven for putting the blog on the back burner. John Wagner, another friend and fellow patient, maintains an excellent blog, and there are other fine examples that I am pleased to share with you -- see the links on the right side of this page.

One thin
g I swore to do when I started blogging was to be honest. This is not always easy. Who wants to admit that their supposition was wrong, their choice mistaken? There is a certain degree of personal exposure that comes with this territory and it is not always comfortable. But if this blog is to be of value, it has to tell the whole story. If this shows me to be someone who absorbs new information and changes his mind, someone who experiences self-doubt, someone who undergoes the downs as well as the ups of life with CLL, then so be it. I have never claimed to have the truth in a bag. I am simply one person struggling with a disease that threatens to take my life.

Earlier this year I bold-faced my disclaimer, which you can see at the bottom right: “I am not a doctor and I do not play one on the internet.” I think this point needs emphasizing. I am a fellow truth-seeker, someone on the same journey you or a loved one may be on. I have no medical tr
aining. I am a guesser. At times I may be an educated guesser, but I am only that.

Dr. John Byrd t
old me in June that “CLL is a long journey.” It was interesting to hear an expert put it in those terms but his words resonate with me. For most of us it is, indeed, a long journey. When doctors call CLL “the good cancer” they are grading on a curve. Many other cancers bring about ends that are far more abrupt. (I recall my chemo-room neighbor Lynn, who had pancreatic cancer and whom I wrote about this past year.) CBS newsman Ed Bradley lived for 18 years with CLL. I am only guessing here, but I believe I have lived with it for 10. There is no good cancer when it happens to you or someone you love; but the decade or two that most CLLers are granted are lifetimes compared to the spans allotted to many of our compatriots, which can often be measured in months.

When it comes to my CLL journey, the future holds both wonders and monsters a lurking. I have w
andered along for three years now using single-agent Rituxan, which is still sort of effective but is, as decorators might say about dated furnishings, a bit tired. During this time HuMax-CD20 has been developed and is nearing the marketplace. Other targeted therapies of promise are in the works. We can never know when a stroke of luck, or a stroke of genius, on the part of a researcher somewhere will lead to a new lease on life for us all. More likely, hard work will lead to incremental progress, and I am grateful for anything that will help.

While science progresses, so does the disease. It is reducing my immunoglobulins, perhaps starting to clog up the marrow, turning my once fine imm
une system into an old clunker that is barely roadworthy. The spectre of more frequent infections lurks, and with it a change in consciousness: I am not immune, and when I pick up a bacterium or a virus I am in danger. This is not something to look forward to, this slow decline. But I am still in the beginning, or at least the early middle, of my journey. Hope is my walking stick, even as I suspect that the climb is unlikely to get easier from here.

Medical matter
s are only part of this trek. Part of it is emotional, part of it spiritual. I have suffered the initial shock, the fear of dying before what I had always thought of as my time, the joy of remission, the disappointment when a test brings bad news. I can get depressed about all this, and I can live in la-la land and forget about it for awhile (road trips are wonderful for that). But most of all I just put one foot in front of the other and keep plodding away. This is one reason, in addition to my conservative approach to treatment, that I have chosen the tortoise as a metaphor for my approach to CLL.

Another way of coping, another part of the journey, is reaching out to fellow patients and their caregivers. I have always been an empathetic person, probably too sensitive for my own good. As a CLL newbie, I learned how difficult -- how terrifying -- the start of the journey could be. As I made my way, I felt the need to reach out to others who would follow in their own paths, whose earths had also been shattered one day by a phone
call, or a doctor leaning forward in his chair and saying, “You have leukemia.”

This blog and my other activities in the CLL community -- I am a moderator at CLL Forum, which now has m
ore than 1,000 members, and I also serve on the board of directors of CLL Topics -- allow me to help as best I can, to share the fellowship that only those of us fighting in this war can know, and to learn from others. Indeed, this blog is the product of a community of knowledge.

And so this blog
is a spiritual act, and also a way of coping, of focusing on what to do, of sharing our common experience.

There is a further spiritual dimension that steadies me as I put one foot in front of the other.

In my life
I have walked to the falls in Yosemite and paused below their streaming thunder on a starlit night; I have walked through the damp coastal redwood forests of California, smelling the incense of pine and hearing the call of crows; I have walked across the red earth of Sedona below spires of rock on which petroglyphs have been etched by travelers of centuries past; and I have walked on ancient paths in France, shaded by trees that have stood for centuries and looked down upon passing knights and priests, peasants and kings.

My CLL journey is made easier by recognizing, above all else and in spite of everything, the beauty of the spherical cathedral in which we are privileged to live.

10 comments:

Anonymous said...

Who knows how long anyone has CLL, truly? I remember I had cuts that just wouldn't heal; they'd always get infected, and I had to use heat to cauterize the infections. That went on for years before my formal diagnosis. There is no way to tell (at present) when the disease started. (In fact, someone has said that there is 'pre-CLL' in ordinary old people anyway. Does that go on to develop CLL.)

As far as being honest, I'm surprised that would even come up. Would anyone (except 'Lonely Girl') have a made-up site?

We can all hope for a 'stroke of luck'. However, the reality is that even the miracle cure Gleevic (sp?) that gives a 95% remission rate in another leukemia took probably 5-10 years to go from lab to patient. We really shouldn't expect a faster route to better treatments.

I do find it interesting that you sum up your life as the experiences that you've had. I think having a fatal cancer means a 2X4 to the forehead. Hopefully it will wake you up. It's not what you do for your self, but what you do for others, isn't it?

I've read your blog for a while, and sense that you aren't as far along your journey to making peace with yourself and the world as you seem to think. Your focus on you is an example. It's really not about you; it's not about 'you' for any of us. You (we) have an opportunity to learn what it means to be alive; it means death will come to all of us, sooner or later (sooner for us).

Find out what is important to the world, the community, others. Concentrate on that instead of focussing on CLL or any other health problem. We have to struggle to acheive something valuable and important, through our pain and disappointment. I'm not saying I've acheived that; I do think I'm further to accepting peace and understanding what is important than you are.

David Arenson said...

I appreciate your comments but I'm not sure I quite understand what you're saying, or I'm not sure you quite understand what I've been saying.

The blog focuses on me to a fair extent because it is intended to be a diary -- it has that title for a reason -- and all us patients tend to see our CLL experience through the prism of our own personal disease. I cannot pretend to provide a thoroughly researched and dispassionate news site a la CLL Topics (and nor is there a need for another one); as I say here, I am simply one man on a journey and when I began this blog there was little out there that focused on all the aspects of that journey -- not only weighing medical facts but also coping with the emotional and spiritual aspects, the whole of the experience if you will.

Honesty -- I mean something deeper here than the absence of lying. It is sometimes hard to let the world know the details of your disease, your emotional and spiritual reactions, those of your wife and family. This is what I mean by feeling exposed. There can be a tendency to pull one's punches, to leave some things out, to color them in a way that may not be accurate. It is important when blogging, even about yourself, to leave your ego out of it as much as possible.

As to the 2x4 and helping others; well, my post goes into great detail about that and how I have been trying to do that since diagnosis. So, yes, I was hit over the head and learned something from it. And I do believe our lives are the sum of our experiences -- hopefully these include reaching out, touching others, and making a difference. But as we see our lives and we perceive them and the world, I think each of our truths is subjective.

Making peace? I have to some extent. I think that, and an empathy for others, does come through in these pages. Have I reached a Zen point where I could care less if I die before I finish posting this comment? No. I do not want to let go of my earthly journey just yet. Look at the last line of my post: a "spherical cathedral." That says at once that I enjoy being here but also that there is a spiritual aspect to it, and all our journeys obviously end in leaving this world.

You conclude by saying: "Find out what is important to the world, the community, others. Concentrate on that instead of focussing on CLL or any other health problem."

Well, what is important to this little corner of the community called CLL patients is how to cope with the disease and what it means for one's life. So the place where I have chosen to try to make a difference is in this part of the world. I cannot save the whole thing, and I suppose I could spend all my free time protesting global warming or the like, but as they say in Writing 101: Write what you know.

Anonymous said...

Dear David,
I really want you to know how informative, comforting and entertaining I find your blog. CLL is a huge part of your life, a huge part of all people lives with CLL and a huge part of those who love people with CLL. It is not the total of any of us but is a part with a lot of impact. Your blog helps me shoulder a weight more easily. Flat out, you have been the most important player in my quest for knowledge. Between basic research,doctors,books,CLL Topics and you, all bases are covered. I wish for an easy cure, I want it all, for all of US! I am blessed you have allowed us into your and M.'s lives. If you can make the time, I hope you stick with your blog. I look forward to every new post. Heck, I enjoy most of the comments! I thought going OFF TOPIC was great fun. Because of that "your people" voiced their opinions. We may not agree with each other. But all of us must be keeping up with you, because we are reading and commenting about and with (sometimes at) each other.
Dude, you have a tribe.
With CHEERS and gratitude,
Carlin Cowboy

Anonymous said...

David, all I can say is thanks for putting your thoughts down in a blog, I come here weekly to read about your thoughts and feelings that I am unable to express. Your knowledge about CLL has helped me along. Keep on plugging, I definitely appreciate you. Elyse

Anonymous said...

I have said this to you privately, but I'll say it here, too.

I love your blog. The demands on a doctor's time are incredible. We rarely have the time to remember that our patients are people. Too often we think of them as problems. That is, we focus on the disease process, not the person who has the disease.

Your blog has helped me understand what patients think about and how they feel. This, I hope, makes me a better doctor.

Keep up the good work -- and the good fight!

Jenny Lou said...

This is a post to the first anonymous comment on this topic. David has stated many times that this blog is a diary of his life with CLL. The reason it helps so many other patient's is because they have empathy for his journeys. David is a great researcher in the area of treatment for CLL. He travels far distances to see the top CLL Doctor's and reports it all back to us via his blog.
What I don't understand with the first post on this subject is the statement that you are further along in the process of finding peace with yourself than David. And you know this how? Most people who have truly found their spiritual path of peace do not need to justify it by telling other's that they have it. This is a basic truth of the esoteric way. Also, hiding behind an aka of anonymous always makes the content seem so much less important. If you can't put your name on your words, then you don't believe in yourself enough. Maybe, if you look into your heart, you were blogging about you and you alone.

Trisha said...

David:

Your blog has been very helpful to me. Since I have been dx'd with CLL (Feb. 06) the information you have provided has been most helpful. As far as your blog being all about you, who else is it suppose to be about? It is your blog. The 2X4 that hit me in the head was one of shock and fear. Your blog and cllforum has helped to alleviate my fear. In fact, I have you bookmarked!! We cannot please all of the people all of the time.

bob larkin said...

I'm with Carlin Cowboy, Elyse, Jenny Lou, Trisha and the rest of the cast of thousands who treasure your commitment to this, and thus to us. I can't help but think something unsetteled is stirring in the heart of "anonymous" to be taking such a curious stance.

John Wagner said...

David,

I guess it has been awhile since I stopped over to read your blog since this latest was written nine days ago. As I read, I was thinking, "there he goes again, expressing what I think and feel but can't seen to get it down into words." And then I read the comments of the first "anonymous" message and I am blown away. That person has totally missed the point of what you do and what you are doing for our "community." He or she couldn't be any more off base. And I feel sorry for whomever because, at least through this message, he or she seems like a bitter, or at the very least, a negative person. I'm not sure why I felt like I had to defend you because you did a very good job of it yourself. And for crying out loud, of course the focus is on you, it is YOUR blog and you are sharing your journey with all of us. OK, I feel better now.

Phil said...

David,
I am only now getting to read through your past and present blogs.
I would like to declare you a National Treasure of the CLL community.