There’s an insightful post on David Arenson’s “CLL Diary” blog for October 8th (CLL, for those who may not be familiar with the acronym, stands for “chronic lymphocytic leukemia”).CLL has some affinities with indolent Non-Hodgkin Lymphoma. Both are blood cancers of the immune system. Both are more-or-less incurable, but very treatable. Both are the sort of disease you live with for a very long time, without getting better and only gradually getting worse.
David cites a recently-published study by the Mayo Clinic of the quality of life of CLL patients. One conclusion is that while “physical, social/family, functional, and overall QOL scores... were similar to or better than published population norms..., the emotional well-being scores of CLL patients were dramatically lower than that of both the general population and patients with other types of cancer.”
The reason? Many CLL patients spend a very long time in “watch and wait” mode, experiencing low-level anxiety that’s grueling in the long term. There’s a certain helplessness that goes along with the disease, David says. It’s like the agonizing moment in the midst of a car accident, when you know another vehicle’s going to hit you, but there’s nothing you can do about it – only that moment is stretched out, in slow motion, over the course of years.From David’s blog:
“The Mayo authors point out that CLL patients do not become happier as time goes on. There’s an obvious reason for this: as the disease progresses, quality of life erodes. Immunity is degraded and patients become more easily susceptible to infections; they come down with related conditions...; they set out on the chemo highway and find that despite remissions, disease resistance builds. What once had seemed to be a manageable and tolerable disease becomes a constant source of medical testing, doctor visiting, and worry over whether things that go bump in the night are the sword of Damocles falling.It can start to feel like the death of a thousand cuts, with no hope for a reprieve, save perhaps a risky stem cell transplant, assuming you can find a donor and have the insurance to pay for it.
And this, I think, is why CLL patients are in greater emotional distress than those with other cancers: With most cancers, you are diagnosed, the treatment options are pretty obvious, you fight the fight, and it’s over. You win or lose. You either go on with your life or you go into the afterlife....
CLL never seems to end. One wakes up to the same thing day after day and month after month and year after year, with the added negative that for many patients there is an overall decline in immunity and health as time goes on.”So, is this the way ahead for me? Or, do I have some chance of breaking the curse?
It’s a spiritual question, one that I think I may need to start addressing in a determined way.
Therapy? Spiritual direction? A more consistent exercise regimen? A program of personal retreats? I’m not sure which one is the best way forward. I’d better start doing something, though, or else risk a slow slide downward.
