Monday, June 30, 2008

Farewell to a dear friend

P.C. and Chaya Venkat were pestering me to wear a hat. I had made the mistake of admitting that, despite a history of skin cancer, I did not always wear one.

We were meeting the Venkats at an Italian restaurant in Sedona early in 2004. Marilyn and I were taking them out as a “thank you” for their website, CLL Topics, and for being there while I stru
ggled with my diagnosis and early treatment decisions.

I had run across Topics one night in October 2003, some five weeks after I got the news that I had a virtually unpronounceable as well as incurable disease that could only be treated by dangerous drugs I had never heard of. Topics was a fairly new website then, not quite as encyclopedic or well-known as it is today. But it was still a welcome voice in the wilderness for those seeking to understand chronic lymphocytic leukemia. I found the feedback form and wrote the following:

“Hi, Chaya, et
al.: [I didn’t realize the “et al.” was P.C., who acted as webmaster and editor.] I just want to let you know how much I appreciate this website! I have recently been diagnosed with CLL, and your site is a comprehensive, intelligent forum for the latest information. I'm 47 and I feel fine, but have swelling of the spleen and lymph nodes; my oncologist recommends I start chemotherapy within the next couple of weeks. I found your site quite by accident, on page five of a Google search on 'fludarabine.' I'm amazed I had not run across it before. At any rate, thank you so much. I'll be spending a lot of time here in the coming days as I learn everything there is to know about CLL and my treatment options. I see you are in Arizona -- my wife and I live in Sedona. Thanks again for all your hard work. Believe me, it is very much appreciated! Cordially, David”

And I received this reply
from a Mr. P.C. Venkat:

“Hi David:

Thanks for your email. Delighted that you find our website a useful resource.

I knew we were going to run into a CLL Topics visitor from Sedona sooner o
r later. The amazing thing is that until we got your message, it hadn't happened yet. Well, congratulations, you are #1 from Sedona, which is where Chaya and I just happen to live. Welcome, neighbor.

Chaya and I would be happy to hear from you if you would like to talk to us. You may reach us at XXX-XXXX. What the heck, we can even meet if that works better.

Best regards,

P. C. Venkat”

That is how our fri
endship began, and it was the start of our shared struggle against CLL. I say shared, for we were comrades in battle, even though the Venkats had a somewhat better understanding of what we were fighting. Chaya and P.C. quickly became mentors, examples of how to research the facts and put all the information together in a strategic vision.

The struggles of ensuing years were yet to come. That night at the restaurant, over pasta and with our faces framed by candlelight, we were in a sense starting out, optimistic and hopeful.

When Marilyn and I arrived, the Venkats were already there.
P.C. looked rather dashing, a thin and wiry man with a salt-and-pepper goatee. Chaya had a friendly face and radiant eyes, and salt-and-pepper hair that complemented his. Before dinner began, P.C. briefly donned a brown Aussie hat to demonstrate how such amazing contraptions are worn.

One thing the Venkats had been learning about was the tendency of CLL patients to develop squamous cell and
other skin cancers, of which I had a history. (This is the sort of dinner conversation we often enjoyed with the Venkats: chemotherapy, complications, the latest buzz about promising treatments, as well as the unending kerfluffles in the world of CLL.) Here I was, pink-complexioned, a product of the Russian steppes and the British Isles. And stubborn as hell, having ignored Marilyn’s admonitions for years to wear sunscreen (“too yucky”) and a hat (“too hot,” “too inconvenient”).

Chaya and P.C. put the fear of god in me, with plenty of abstracts sent
my way and other incontrovertible evidence that proved that when it came to sun precautions, I was being a dumbass. I will never forget the e-mail P.C. sent me, following on a discussion of skin tone and sun damage:

“Hi David:

Just so that you don't feel singled out on the strength of your undeniable pinkness, consider this. I have cafe-au-lait or perhaps cafe-mocha skin color, I was born in Malaysia (2 degrees north of the Equator), and have not always been afflicted with CLL or knowledge of it. Nevertheless, ever since we moved to Arizona, I have worn a broad-brimmed hat, even before I was diagnosed, and wore it on ten yard trips to the mailbox, excursions into the back yard, to the post office, fancy restaurants, doctor's offices, not to mention hikes and long drives. And, I might add, took a lot of ribbing for it from parties I will not mention. With some determination and in spite of an early tendency to lose track of the much maligned object, it has become a trademark. People are surprised now when they see me without the darn thing. See, cussedness does pay off. You can take comfort from this too: if it gets ratty enough, nobody will be tempted to make off with it.


PC (Mr. Bronze to you.)”

I still smile when I read this even though P.C. is gone, for it sums up his sense of h
umor, his no-nonsense approach to things, and his willingness to be of help. This was something that ran in both Venkats. A short time later, Chaya published Dying to Get a Tan on CLL Topics. She wrote it with me in mind, she said. In other words, I was the idiot who helped inspire her cautionary warning to patients everywhere. But it was done out of love, and with good humor.

And that is what CLL Topics was and is, a labor of love. It was a labor for the larger patient community, an effort by two people uniquely suited to making sense of insensible papers, a couple with bullshit detectors the size of the Hubble telescope, a talented pair who could separate the wheat from the chaff and distill a muddle of information down to the essential. I was honored to serve on the Topics Board of Directors for a few years and was able to observe close-up the quality of attention that the Venkats put into patient education and advocacy. They lived it and breathed it 24/7.

But Topics was also something more personal, a way for Chaya to help her husband and for both Venkats to put their heads together in search of a way out of this CLL mess. We used to joke about the fact that many of the articles seemed to be about medical issues P.C. was currently experiencing or treatment options that he was considering.

And we also used to joke about the fact that I seemed to be following in P.C.’s footsteps when it came to treatment. We both started out with single-agent Rituxan, for example, and once sat side by side in the infusion room. By last year, when it was clear that P.C. was going to undergo a double cord blood transplant, a transplant looked to be in my future, too. Dr. John By
rd and the inevitable progress of the disease had told me it was.

When we ate dinner last summer at a Thai
restaurnt, P.C. explained in detail why the time for his transplant had come. There was no sibling or unrelated donor for an adult stem cell transplant. His remissions from HuMax-CD20 were getting shorter. He was in the peak of health, with no comorbidities, and he wasn’t getting any younger. It was clearly a decision that he felt comfortable with, one that made sense.

I am reminded here of a quote from the Czech playwright and president Vaclav Havel:

"Hope is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out."

And so P.C. began his preparations and earlier this year traveled with Chaya to th
e University of Minnesota to undergo the procedure. I last spoke to him around the end of May. He was feeling good, happy that the engraftment was going well. It all looked promising. And then, as Chaya has so eloquently explained in Harvey’s Journal, the unexpected happened, and it was followed by the unthinkable: P.C.’s death.

As I write this I still cannot fully believe that he is gone. The story was supposed to end differently, with P.C. finding his cure and me somehow lumbering along after and with the four of us raising glasses of red wine in 20 years and saying, “Remember that time we had CLL?”

Oh, how I wish stories had happy endings. I wish
it for Chaya, who wrote article after article with love and affection for the Round-Headed Kid. The EGCG-based recipe for Harvey’s Chocolates symbolized her devotion -– a homemade treat, a way to knock back CLL in the dark chocolate that P.C. enjoyed.

And, of course, I wish it for P.C., who was as good a man as any I have ever known. Many tears have been shed this past week, and not just in Sedona. P.C. had friends everywhere that people struggle with leukemia.

But he would not want us to spend too much time crying; he would call upon us to be brave and continue on. P.C. approached things with logic, focus, and determination. He did not spend his time shaking his fist at the stars or bemoaning his fate. He was not a prisoner of fear. He did not ask anyone else to do the heavy lifting when it came to learning what CLL was and how to cope with it.

P.C. was a superb strategist who did everything right. It was one of those curveballs that Chaya has written about so often that got him. There was
no way to see it coming.

It strikes close to home, of course. One of those curveballs may yet get me. Or perhaps I will survive. The one thing I know is that if I do somehow beat CLL, it is because I learned how to fight from P.C. Venkat.

I tip my hat, which I wear all the time now, to you, P.C. You will be missed more than you could ever know.

Three of my favorite people: Terry Hamblin, left, with P.C. Venkat and Chaya Venkat. The photo was taken when the Venkats went to England in 2006. The landscape photos accompanying this post are of Sedona, the sort of scenes P.C. saw every day from the trails he loved to hike with his dog, Jasper.

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.