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 thing 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 training. I am a guesser. At times I may be an educated guesser, but I am only that.
Dr. John Byrd told 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 wandered 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 immune 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 matters 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 more 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.
5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State - May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica. I still take 3 battleship grey ca...
6 days ago