Remember when the days were long
And rolled beneath a deep blue sky
Didn’t have a care in the world . . .
But this is the end
This is the end of the innocence
-- Don Henley
"CLL is a long journey," Dr. John Byrd told me when I saw him at Ohio State University last June. While there is maddening uncertainty surrounding disease progression, the meaning of prognostic tests, the effectiveness of treatment, and pretty much everything else about chronic lymphocytic leukemia, Dr. Byrd put his finger on the one thing we can count on: It is a long journey.
And like any journey, it has a beginning, a middle, and an end. I have now reached the middle of mine, and so have many of my friends. People who were, a few years ago, rather healthy and relatively unbothered by their disease, are now sicker, facing more challenges, and using or thinking about using drugs they swore to avoid until they had no choice. For many, the "break glass in case of emergency" moment has arrived.
I am not there yet, but I am getting closer, and I am less afraid of shattering the glass than I used to be.
Back in ancient times -- the fall of 2003, when I was diagnosed -- having CLL was like having an invisible rabbit for a companion. I knew it was there, but no one else could see it, and I tended to ignore it as well. It didn’t seem to matter much, or to do much. Despite the abnormal white count and the presence of some swollen lymph nodes, my immune system worked pretty well. My hemoglobin and platelets were smack in the middle of normal, and I wasn’t getting any sicker than I had before my diagnosis. It was like having a hobby cancer, one that could be nicely tended and that didn’t do anything really bad, and which therefore didn’t seem too significant.
And so the world seemed full of possibilities when it came to treating it, starting with herbs and supplements. EGCG, which I consumed in some fairly massive quantities, held promise. I downed resveratrol in both its encapsulated and more tasty liquid red form. I read that sugar fed cancer and so I quit eating sugar entirely for awhile, until I was blindsided by a piece of raspberry pie on the coast of Maine. I dabbled in supportive drugs, such as cimetidine and singulair, which were supposed to poke at the CLL and keep its growth in check. I recall now with some amusement making an EGCG salve that was orange in color and slathering it on myself before hopping on the treadmill, hoping it would absorb into the lymph nodes, and leaving a trail of orange sweat behind me when I was done. I experimented with almost any tweak that looked as if it held some promise, and like so many patients before and since, I believed that some of these things might really make a difference. Save EGCG in some lucky cases, I am now skeptical that these approaches matter much, at least in situations like mine.
Rituxan, to which I responded enormously well the first time out, looked like something of a miracle drug -- able to keep the disease at bay without apparent serious cost. That was the deal: softball ways to achieve hardball rewards. And I had friends who were doing this, and for a time it seemed as if it would work indefinitely and CLL would continue to be an afterthought, un lapin invisible. Some other friends opted for chemotherapy in one form or another, and it brought them deep and seemingly durable remissions, and the general sense I had was that "my CLL generation" was none the worse for wear.
And then, time passed, and I learned -- "we" learned -- some things about the nasty underside of the disease. The way it acts in the beginning is not necessarily the way it acts later on. This is because it progresses, especially if one develops an 11q or 17p deletion, and this clonal evolution tends to occur the longer one has had CLL. The disease comes back after treatment, and is harder to treat as effectively the second time, and the third time, and the fourth time, especially if the clones grow more aggressive. One can develop autoimmune problems, such as AIHA or ITP or skin reactions, that are, on a day to day basis, usually worse than the CLL itself. Immunoglobulins drop as sure as the sun sets, and therefore infections occur more frequently, sometimes ones that are hard to shake, even with antibiotics. What we began to learn was that the rabbit was not so invisible after all, and that once it materialized it was not a cute and loveable bunny. Coping with the hobby cancer has now became a full-time job for some of us.
Also, alas -- and "alas" does not do the concept justice -- we have lost friends to the disease or related conditions. People we knew, loved, and respected are now dead. Sometimes we can see, in hindsight, how it came to be, and sometimes we cannot. The sense of loss is great all the same. It is like being in a war and watching your buddy die next to you in a foxhole; you are angry and sad and part of you wonders if that will be your fate, too.
If these things I am writing about seem a little dark to some of you, this is the point at which I need to remind everyone that CLL comes in many forms. The lucky patients are those with genuinely indolent cases -- those who have what might be termed asymptomatic lymphocytosis -- and you might be one of those, and you might be spared from finding that the journey has a middle. My friends and I, we seem to be confronting CLL in all its plumage, and it is this experience that I am trying to describe.
And so, here we are, learning to cope with more stress than we had imagined at the outset of the journey, and with an array of choices for treatment that get no easier to decide upon with time. For some of us, myself included, the idea of a stem cell transplant is no longer out of the question, no longer something so distant as to seem impossible. Indeed, the thought that, despite serious risks, it might just be curative, is welcoming on some level, a huge relief. And so the unthinkable has now entered our thoughts and is part of our daily ritual, the mantra that goes What Will I Do?
If I have learned anything, it is that the rabbit is real and that there is no easy answer when it comes to what to do about it. I take CLL more seriously as its side effects have become more serious. I rely more on my own instincts as I sort through the maze of conflicting advice that expert doctors (and others) provide. I am stronger, braver, and oh so much more tired of it all.
Looking back, I think there is a powerful desire on the part of newly-diagnosed patients to believe the "it’s-the-good-cancer-and-you’ll-die-with-it-not-because-of-it" story that we all hear at the beginning of the journey. For awhile anyway, that illusion is borne out by the disease’s seeming inactivity. And equally, there is a desire on the part of many to believe in The Next Big Thing, usually a drug or treatment that will come along and tame or even cure the disease If Only I Wait Long Enough. In the interim, we parse prognostic test results like fortune tellers reading tea leaves, in the hope that they will tell us our future. But even the best fortune tellers can only reveal so much. Each person’s CLL has a course of its own to play out, animated by factors that we can only guess at. We look to our doctors for reassurance, and they are wont to give it, even when the rabbit is sitting right there, chewing on an oversized carrot and saying "What’s up, Doc?"
The reality, the truth of the matter, is that for many of us, those with progressing CLL, the time comes when the clock starts to run out. We must use the treatment tools that are here today, carefully, and hope for the best.
Some of us pray, too. I am an agnostic, and I pray also.
I've go to admit it's getting better: More good news about my CLL (chronic lymphocytic leukemia) - Most of my blog posts can be followed here. The full story of my CAR-T therapy, the incredible rollercoaster and the amazing results can be found there I...
3 days ago