Monday, June 09, 2008

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 sp
inning 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 Salvado
r 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 comforti
ng. 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 de
scribe 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 diagno
sis, 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 us
e 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 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 a
t 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 li
terally. 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 w
ebsite 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 begi
nning 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 sp
ouses 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 ca
n cease to be the prisoners of our disease.


Anonymous said...

I was diagnosed in 1998. Initially, the diagnosis was just non-Hodgkin's lymphoma. I immediately hit the internet and did what research I could. Once the biopsy said CLL, the information said 'incurable'. That was difficult.

No one told me CLL was the 'good cancer', and that word, incurable' would have painted the suggestion as a lie.

The only good thing is that it gives you time to prepare for the inevitable. You know, the 'getting your affairs in order' type of stuff. Yet, that is a good thing. Not leaving a mess is important.

BTW, I found plenty of info years before David was even diagnosed. The list was very helpful, as were the usual suspects on line.

Heidi said...

Thank you, David, for this post. I am the Marilyn in my equation, and my husband's mother has CLL as well.

I couldn't put a finger on why I am so reluctant to tell anyone about my husband's CLL...and the paragraph addressing that has been extremely helpful.

Also knowing that the way we're reacting (me doing loads of research, husband going about pretending nothing is wrong) is relatively normal is of great comfort. We're new to this, 2 mo. past diagnosis.

I will continue to read, know that your writer's gift helps many more than you know.

David Arenson said...

Alas for those who get their affairs in order, only to be cured by a stem cell or cord blood transplant. What I am trying to say is that there is hope of beating this thing. It is as inaccurate to call CLL "incurable" as it is to call it "the good cancer."

As to online resources, ACOR has been extremely helpful since it was founded some ten years ago and for many years was pretty much the lone voice, as it were. Unfortunately, it is not a terribly user-friendly format. The arrival of CLL Topics in 2003 made a big difference, and the various Yahoo groups also came online around that time. Dr. Hamblin's blog in 2005 and others since also help put the medical facts and the personal experience in context. Other sites, including the UK CLL Support Association and CLL Forum, have arisen in recent years. The growth in CLL-oriented websites has been pretty much exponential.

Heidi, I'm glad I was able to be of some comfort and support here. I wouldn't want to relive those first two months but things will get easier as you become more familiar with the new landscape. IMHO it is OK for your husband to take some time to adjust to CLL, but it is not OK to ignore it as a permanent response, the reasons for which I outlined in my post.

Michael said...

Your thoughts run very similar to what I have gone through in many ways. Just past the first year of diagnosis and what a ride so far. So much learning, freaking out, worrying and now moving toward proactive, faith, exercise, nutrition and preparing for hte future. Thanks for the stories

Pat said...

In 2006, I stumbled upon acor. On acor a discussion ensued (to put a mild spin on it; some might say it was a heated argument) that led me to CLL. And that is how I found you -- and have been my personal CLL guru. Thank you for what you have given to me and to countless others.


I was dx in Japan and so didn't the "good cancer" speech. The doc didn't know a lot about CLL and we being in the Japanese hinterland and not Tokyo didn't help matters much. I found CLL Topics and told him about it (he had me coming in every month for a blood test so we spent lots of time together) and as most docs in Japan can read English he learned a lot and I ended up getting the tests CLL Topics recommended me to get.

I may even return to Japan one day for the security of their healthcare as my wife is Japanese (I left several years ago).

Early on I found ACOR but would never return to that place: one person told me my only real choice was to get treated in 2005 or 2006 (I was dx in '05 and it is now '09 and I am still untreated) and another told me I had 1 year to get "my ducks in a row." "The most miserable bunch of cancer personalities all in one convenient place," is how I sum up ACOR.