Then and now, Part 1 -- Newbie days

Someone e-mailed recently and asked me to write about what life was like just after my diagnosis with chronic lymphocytic leukemia. So I began to think about those days in the fall of 2003 and how they compare to the way I experience CLL today, almost five years later.

Five years is a chunk of change, time-wise. Long enough to have traveled from a sort of childlike innocence about CLL to an older and wiser adulthood. Long enough to have had history with the disease. Long enough to see the contrasts between then and now.

I was diagnosed on September 3, 2003, and have written here about the surreal experiences of that day. It started with a dream in which the room was spinning and it ended with being discharged from the emergency room having learned that I had leukemia but that it was, as the ER doc sunnily put it, “the good kind to have.”

In other words, to put the cherry on the Salvador Dali sundae, I had just won the cancer lottery.

The “good cancer” speech is a rite of passage for most CLLers. It’s like being told Santa Claus exists. Later, we grumble to one another that Santa isn’t what he’s been made out to be. Why, for example, does he bring us so many lumps of coal? Eventually we learn that this isn’t Jolly Old Saint Nick at all but rather his long-lost sociopathic brother, Dick, whose purpose in life is to give us the shaft.

But back then, in the very beginning, the “good cancer” speech was comforting. It made it possible to not freak out entirely. It provided a sense that despite the diagnosis there was still time to be had.

I can only describe the first few weeks of life with CLL as a combination of the momentous and the mundane. Momentous, obviously, because I had been diagnosed with an incurable cancer. It wrenched me out of a comfortable if rather dull reality into a new one in which my emotions and senses were heightened. The fear of being dead was making me feel much more alive.

When I ate an apple, I savored it more. When I went for a walk, I noticed the scent of the trees. When I listened to music, it hit a deeper note within me. I was no longer taking things for granted, and I was drinking in the world around me. This was a subtle and subconscious thing that simply just started, like the flipping of a switch, after I was diagnosed.

At the same time, I was aware of how fragile I was. On anything medical, I held Marilyn’s hand. She was the one who, initially, looked into the tests, the drugs, the details of the disease. She kept a folder in the bookmarks on our computer entitled “CLL -- M only.” I didn’t go there, nor did I want to. If there was something she felt I needed to know, she would find a comfortable article, or segment of an article, for me to read. What little internet searching I did in the beginning was for stories of CLL survivors, people who had lived a long time with the disease. I wanted to see proof that it was possible.

This was part of my first great task after diagnosis, which was to begin to grapple emotionally and spiritually with what it meant to have leukemia. And there was a purpose to this beyond mere navel-gazing. I was less concerned with the “why it happened” than the “can I survive it?” And it wasn’t so much “can I?” as “how will I?” It was “what do I need to do?”

This proactive, optimistic approach reflects my personality. I do not enjoy sitting around being miserable. And the “I” is important here; I felt from the very beginning that beating CLL was something that I needed to do. Obviously it would require the help of doctors and drugs. But this was my body and my life; I could not use ignorance as an excuse, or being overwhelmed as an excuse, and surrender the struggle to someone else. I felt then, and I feel now, that to beat cancer you need to put your all into it.

To summon my all, and to adjust to the wherewithal of the “new normal,” I gave myself the gift of time. Every evening I took at least an hour for some dedicated coping. Marilyn had bought a book years earlier that acted as my guide for the start of this journey: Getting Well Again, by O. Carl Simonton, et al. It covered all the bases -- the “cancer personality,” fear of death, handling treatment, relationships with friends and family, living with a chronic condition. It provided visualization techniques (such as killing cancer cells) along with exercises (“If you had a month to live, what would you do?”) that I found to be helpful. I read just a few pages a day and kept a journal in which I wrote down important points, revelations I had, exercises the book called on me to do. (Those who wish to read the enthusiastic review I posted to Amazon.com in November 2003 can click here.)

What I was doing was empowering myself. I realized on a gut level that I could not cope with important issues like treatment -- and my hem/onc was starting to breathe down my neck about doing single-agent fludarabine –- without developing the tools necessary to make good decisions. To do that, I needed to summon the inner strength to look beyond fear and find a more balanced, centered view of leukemia and what it meant for my life.

Let’s face it, fear was ever-present, always lurking in the background, sometimes reaching the freak-out stage several times a day, especially when a doctor visit or test result was impending. I developed a couple of techniques for coping with it. One was to silently say “cancel” when I began to feel it coming on; sometimes I said "cancel" dozens of times a day. The other was to keep a useful quote written on a piece of paper in my pocket: “Panic is a projection that is not real. We are not just our fears. Our fears do not necessarily determine our future. This is significant.” Those were the words of Greg Anderson, a lung cancer survivor and author of 50 Essential Things to Do when the Doctor Says It's Cancer.

Another thing I did was tell myself “One step at a time, one day at a time.” This helped keep me from feeling overwhelmed and it often kept anxieties from getting out of hand. It was a way of giving myself permission not to cope with everything at once. That included not telling friends and family, which would have created an obligation for me to respond to their well-meant questions when I was barely able to cope with my own.

These early weeks also involved some crying on Marilyn’s shoulder, often literally. She may be a little under 5' 3" but she has the shoulders of Atlas. Her supportive nature and her sense of calm (for she kept her fears away from me), were essential in creating the nurturing environment that I needed. In so many ways she helped me keep my balance, as she still does.

So that was the program: Taking time. Finding my inner strength. Nurturing myself. Those were the essential steps in learning to cope, in embracing the experience and getting beyond the reactive nature of the animal brain (fear) and into the zone of a somewhat calm, if not always zen-like, approach. (I’m not the Dalai Lama, and being calm about cancer is an imperfect process. But five years later I can say that raw fear is something I rarely feel.) Full Catastrophe Living is both the title of a useful book by Jon Kabat-Zinn, a physician and Buddhist, and a pretty fair description of what life with CLL is like sometimes.

Slowly I was able to start handling the details of CLL on my own, the reading and the researching. One night, while looking up “Rituxan,” I came across a website called CLL Topics. Back in 2003, there was very little patient-friendly information on the internet. No blogs, few discussion groups, little analysis that put things like therapy choices into perspective. So CLL Topics was a revelation.

The least I could do was send an e-mail to the website’s owners and thank them. And that is how I learned that Chaya and PC Venkat live four miles away. Marilyn and I became friendly with them, and some time later I wrote an article for Topics, with new patients in mind, called “Getting a Grip.”

Now, I mentioned before that in the beginning Marilyn was the one who kept track of the mechanics of CLL -- the diagnostic and prognostic details, the treatment options, the cold hard facts, the scary stuff. With time I took over this duty, and I did if for two reasons: One, because in order to put my all into the battle, I need to know what I am fighting. And two, because it would not be fair to burden her with the nasty details and attendant fears and stresses while I live in la-la land.

And that is the choice all newbies must make: Whether to accept and embrace this new journey or not. Internet forums are filled with spouses who do the talking and the learning while their CLL mates go on pretending that nothing is wrong. Maybe this works for them in a way, but I do not think it is the path to choose if you want to maximize your chances of beating CLL.

As Dr. Jerome Groopman has demonstrated, there is real hope -- as opposed to wishful thinking -- to be found in the battle against cancer. But it requires a certain degree of involvement, a good familiarity with the facts, an emotional coming to terms, a synthesis of the information on a conscious and a subconscious level.

The bottom line is this:

If we cease to be the prisoners of our fears, we can cease to be the prisoners of our disease.