The deadliest catch

I was brushing my teeth Friday when I heard that my neighbor John McCain had chosen Sarah Palin of Alaska to be his running mate. My first reaction was “Has he lost it?” My second reaction was a mirror-smudging spit-take upon hearing a TV reporter say, “Her favorite food is moose stew.”

In a single stroke, McCain gave up his best issue against Barack Obama -- experience -- and showed that he is just another cynical politician whose slogan, “Country First,” is meaningful only when it is convenient for him. In the process, he has insulted the intelligence of the American people and cast his own judgment in doubt, looking more like a desperate opportunist than the statesman he purports to be. In contrast, Obama’s pick of a solid and experienced running mate in Joe Biden makes him look like Lincoln, Washington, and Jefferson rolled into one.

Readers of this blog know that I have had reservations about Obama and his lack of experience. I ended up voting for Hillary Clinton in the primary. I have always liked McCain, more or less, though I disagree with him on a great many important issues. For the first time in my life, I have been questioning whether to vote Democratic. (Marilyn, furious about the sexism she saw during the campaign, plans on writing in “Hillary Clinton” this fall.)

Now, thanks to the Palin pick, John McCain has pretty much convinced me that voting for him would be an unacceptable risk. For there is no way on God’s green earth that someone who has served 20 months as governor of a state with fewer people than Austin, TX, and whose prior experience was as mayor of a town of 5,469, is ready to assume the presidency of the United States and the leadership of the free world. As today's editorial in the Fairbanks News-Miner puts it, "Most people would acknowledge that, regardless of her charm and good intentions, Palin is not ready for the top job. McCain seems to have put his political interests ahead of the nation’s when he created the possibility that she might fill it."

If something happens to the 72-year-old, melanoma-prone McCain, I shudder to think of Sarah Palin negotiating with Vladimir Putin, or finessing Kim Jong Il, or dealing with a sudden nuclear crisis in Iran. And I have to wonder, too, whether a President McCain might not do something as rash and impulsive and nonsensical as he did in picking Palin. John McCain has thus cast doubt on his own fitness to serve.

I really do have to wonder about his temperament -- which Obama mentioned in his speech Thursday night -- and which has been the subject of some not-so-quiet concern by McCain’s own GOP colleagues. "The thought of his being president sends a cold chill down my spine," Sen. Thad Cochran (R-Miss.), told the Boston Globe. "He is erratic. He is hotheaded. He loses his temper and he worries me."

Consider me worried, too.

And we may be hearing the word "Eagleton" pretty soon if this "Troopergate" investigation shows Palin to have been playing petty politics in the governor's office.

The Palin pick has been just another episode in what has been a bizarre political year. As Marilyn said the other day, “Doesn’t this whole campaign have an air of unreality about it?”

There is something about the GOP ticket that smacks of a bad sitcom (I nominate Tim Conway and Tina Fay for the leading roles) -- the story of a crusty, doddering war hero married to a beer heiress who runs for office with a gun-toting, moose-eating, hockey mom who also happens to be governor of the 49th state, where she and her snowmobiling-champion husband are raising their kids Track, Trig, and Willow (Paper, Scissors and Rock evidently having been taken, as someone pointed out). Oh, and between the McCains and the Palins, they have ten homes, so there’s always another venue for a hilarious misadventure.

Except, let's hope, the White House.

Your president after next, possibly as soon as January, seen here with what appears to be a group of neoconservatives.

Blind trust

A CLL patient with an allergy to Tylenol, which is clearly noted in his chart, is treated at MD Anderson. Before his Rituxan infusion the nurses try to give him -- what else? -- Tylenol.

Another CLL patient -- me -- arrives for his first day of R-CVP therapy. “So, what are we doing today?” I ask the chemo nurse. “FCR,” he says.

A patient with a high lymphocyte count goes to a leading cancer center, Dana Farber, to find out what’s wrong. He is diagnosed with CLL by one of the "names" in the business. Chemo nets the patient a CR; it is only when he is coming out of remission two years later that he discovers, at the Mayo Clinic, that he has Mantle Cell Lymphoma (a much more aggressive disease) and was misdiagnosed in the first place.

These stories have one thing in common: No matter where you go for diagnosis, care, or treatment, people are fallible. A chart is not read. Chemo orders are misread. Assumptions are made at diagnosis when every last “t” should be crossed and “i” dotted. People get busy, sloppy, or inattentive. It happens in all walks of life, and one should not assume that the gravity of the situation -- your health, your life and death -- inevitably provides an extra measure of competence.

I will never forget the e-mail I received from the woman with stable CLL who went to see a world-famous expert and was told that her platelets had crashed. Which had her in quite a panic until the doctor realized he was reading someone else's CBC.

The purpose of this post is not to slam health care professionals, most of whom do a good job in a busy and stressful environment. It is to remind you, dear patient, to stay on top of all the little things so that they don’t become big ones. As a managing editor told me when I was a cub reporter: “When you assume something you make an "ass" out of ‘u’ and ‘me.’" Corny as hell, but prophetic.

Or as Ronald Reagan said about treaties with the Soviets, “Trust but verify.”

Or as the woman I know who went in for a mastectomy and had the wrong breast removed said, “How was I supposed to know that I had to remind them which breast to remove?”

Read here about a man who went to the Mayo Clinic and lost an eye because he assumed he was being seen by a doctor but was instead being seen by a man who looked like a doctor and acted like a doctor but was in fact a convicted criminal with no medical training. How was he to know the man was not a doctor?

How was our patient at Dana Farber to know that he had been misdiagnosed? Sadly, this error was to cost him his life, for at relapse he had to proceed immediately to a risky stem cell transplant and was unable to get anything close to the CR that was required for it to have a real chance of success. All too late he learned about a certain chromosomal translocation, t(11.14), that his first doctor should have been on top of.

That is the most extreme and tragic example of what can go wrong, for the patient tried to do everything right and the system failed him. Try as hard as we might, we cannot always navigate safely through a world of strange words, concepts, procedures, and tests.

But we have to try. Our only recourse is to follow my managing editor’s advice and assume nothing, not even the most simple or obvious thing.

For example, Marilyn or I check every chemo bag that is attached to my IV pole. Does it say "David Arenson" on the bag? Is the name of the drug correct? Is the dosage as planned?

Caretakers are extremely helpful for patients who are feeling sick, or worried and anxious, or who have been turned into zombies by medications. Benadryl lowers my IQ by about 50 points. Me . . . want . . . sleep.

In the case of the Tylenol at MD Anderson, the patient noticed the error. Later, as he snoozed away thanks to premeds with Rituxan dripping into his veins, his wife noticed that his blood pressure was not being taken, which is supposed to be standard procedure at MDA. That was error #2 of the day.

This sort of thing happens all the time. I know of one CLL patient who was given massive amounts of Decadron because the nurses did not understand the conversion between dosages of different steroids. 40 mg of prednisone does not equal 40 mg of dexamethasone (Decadron). Somebody assumed something and made an ass of themselves. Fortunately, no real harm was done.

Many patients live to tell the tale of a symptom that is ignored or dismissed but that turns out to mean something. My initial drop in hemoglobin last year, which my doctor and the head nurse assumed was due to marrow impaction, seemed a little too suspiciously rapid to me for comfort. I knew it was AIHA before they did, and it was only my insistence on tests being done that confirmed the diagnosis before I collapsed in the street.

Of course, like everyone else, I am not always so lucky at second-guessing and fielding curveballs. In March I made an appointment to see a dermatologist. When I got there I was seen by the physician's assistant, who used liquid nitrogen to burn off a few suspicious keratoses on my head. Later I asked why the doctor did not see me and was told that upon arrival I should "ask for the doctor specifically," otherwise he would probably delegate to the PA if he thought the issue at hand wasn't significant.

Well, it's all significant to me, and I had assumed -- oops, there's that word again -- that if I made an appointment to see a doctor, that's who I would see. I had better luck than the Mayo eye patient but still was blindsided by this wrinkle in the process. On my next visit, three months later, I asked for the doctor, who saw a suspicious growth that was biopsied and which turned out to be a squamous cell carcinoma. The PA had tackled it with liquid nitrogen during my previous visit to little avail; would a better-trained eye have noticed something "significant" at that time and handled it better?

Live and learn.

Treatment, obviously, is one area where getting it right is essential, especially when it comes to chemotherapy. Here are some common sense precautions you can take:

Arrive on chemo day knowing what is supposed to happen. Bring a complete list of drugs and dosages, including premedications. Try to bring a caregiver with you, especially if this is your first chemo experience, who can stay on top of things, including your reactions when the drugs are infused. More than once Marilyn noticed that my face would get flush during Rituxan therapy. You cannot see your own face, and if the premeds have zonked you out, you may not be aware as other symptoms come on. Nurses can get busy and step away; caregivers can watch things like a hawk.

Verify with the chemo nurse what is to be done, in what order, and at what dose and rate of administration. Let the nurse know if you have any allergies, or suspected allergies, to any of the drugs. Do not hesitate to ask to speak to your doctor, or the doctor on duty, if you have any concerns.

All this comes under the heading of "why you should become an educated patient," or at least an organized and thorough and vigilant one. Do not hesitate to be a pain, or to ask "stupid questions." Many health care workers appreciate patients who try to make sure things are going right. That benefits everyone.

Where does blind trust lead you? Perhaps to where you want to go. Or perhaps to life without an eye. As Louis Pasteur once said, "Do you ever observe to whom the accidents happen? Chance favors only the prepared mind."

O blessed iPhone

My grandfather was impressed by airplanes. Of course, he was born in 1895 and grew up in Tomsk, Siberia. Freedom and electricity were pretty big deals, too. But whenever I arrived by jet at JFK airport in New York in the 1960s, it was an occasion. Sure, his grandson was arriving from Arizona for a summer at Seagate. But, ox carts be damned, look how he came!

Well, you know you're feeling older when technology surprises you, when it outpaces your wildest imagination. Take cell phones, for example. During my lifetime they have gone from science fiction (a la the communicators on the original Star Trek) to clunky imitations of real phones (remember the big box mobile phones of the George Herbert Walker Bush era?) to the iPhone 3G, which Apple's Steve Jobs calls "the internet in your pocket." (Speaking of wild imaginings, the -- um -- internet?)

Back in 2001, Marilyn and I bought our first cell phone. It was a Motorola Timeport. The name was absolute Star Trek. It flipped open like Kirk's communicator. It had a screen with bright green display, which was forward-thinking back at the turn of the century, when most cell phones had dull black-on-gray LCDs. And it did a whole lot of stuff, things that would have dazzled Lt. Uhuru, the communications officer of the Enterprise.

That's another way you know you're getting older: When things like phones have functions you didn't know existed, and when they tend to baffle you, and when they require glasses to attempt. (There are ads here for a cell phone called "Jitterbug" which is intended for old people, has big numbers, and doesn't do a lot besides make calls. Not wanting to cross entirely into codgerdom, I have refused to even consider the thought of getting such a, er, simple and functional device.)

For seven long years we used our trusty Timeport, which continued to function even though the "4" key began to fall into the body of the phone. Then, early in June, we went to the Verizon store and looked at the phones. Each one was smaller, thinner, and more complex than the next. If you have fingers the size of pencil lead and the eyesight of a spy satellite, you can work them. Other than that, they were unremarkable. The display screens were tiny and hard to read, web pages that loaded looked disjointed, not unlike they do when they load at home and there are several errors on the page.

Then we went to the Apple store. Now, I am not an Apple groupie. I prefer PC to Mac (sorry, but no delete key?). The employees at the Apple store tend to look a bit like members of a cult, outfitted in light blue T-shirts emblazoned with the words "I could talk about this stuff all day." At any moment I expected to be asked, "Have you heard about the Rev. Steve Jobs?"

So it was with a certain amount of skepticism that we both approached the iPhone display. "Twaddle!" I muttered. "Hype!"

But within about five minutes we were in love. It was sensible. It was intuitive. It had a big screen, for a cell phone, and you could "dial" the numbers without pressing all the numbers around it. The web interface looked like the web. It had Google. You could search for "pho Phoenix," have 20 Vietnamese restaurants show up on a map, then touch one, which would bring up a display showing the phone number as well as the website of the restaurant. You could touch the phone number to dial the restaurant, then ask the map to show you how to get there from the Apple store. It did everything but cook dinner.

Lest you think locating food is all it's good for, this "internet in your pocket" is a godsend for eBay sellers. Countless have been the times that we have run across a pile of something and said to ourselves "I wonder if this will sell on eBay." Now, envisioning God's gift to communication in our paws, we realized we could easily go to eBay and find out. It would pay for itself in a month.

Rev. Jobs, take my money! I'll sign over anything to have one of these magical devices!

But they were out of them. They had been out for a month. "Steve has a big announcement next Monday," a starry-eyed young man confided. "We think it's the new iPhone 3G."

And so it was. And Steve described the improvements and new features. And they were good. And it was half the price of the old iPhone. And we fell upon our knees and gave thanks.

And this is why we arrived at 7:15 a.m. on Friday at the AT&T store in Flagstaff, Arizona. Now, Flagstaff is not a big city. It has less than 100,000 people. But it's the biggest thing for hundreds of miles in any direction, so it gets an AT&T store. And they get iPhones. There were a grand total of 15 people in line when we got there, 35 by the time the doors opened. As they say in questionable massage parlors, everyone had a "happy ending."

And so the little darling is at home now, wanting to connect to our in-home network but willing to bring us the net via AT&T (which means we also have a backup way to get online the next time our $%@#! internet provider crashes). We have set up voice mail, which could not have been easier and which also is visual as well as aural. We went to eBay and saved it as an icon on the home screen of the phone. We have located pho in Denver.

It also takes pictures and plays music and synchronizes with your e-mail account and seems to burble when you call it (which I think is actually the vibrate function).

Like my grandpa, I have reached the age when I am, quite simply, blown away.

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 struggled 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 or 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 friendship 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.

Best,

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 humor, 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 Byrd 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 the 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.

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.

Life on the treadmill

I've lost 10 pounds so far and sometimes I feel like the guys in the video below.

I've also trained myself to eat less -- "they" say it takes about a month to do -- and life is easier because I'm spending less time digesting. As they say in Okinawa, "hara hachi bu," or "eat until you are eight parts full (out of ten)." One thing I have noticed is that my energy level is more constant, more even, with fewer peaks and valleys. This is also in part because I am eating healthfully and have pretty much stayed away from sugar except in the form of an occasional orange. My blood glucose level, which was a little high while I was on big doses of steroids, is now well within normal. (I am currently down to one methylprednisolone pill -- 4 mg a day -- to guard against AIHA.)

There is a life-affirming element to all this, a decision to get my physical temple in order, and by extension my spiritual one. I think most of us are probably affected by CLL in a lot of subtle ways we don't consciously recognize. For me, a sense of abandon when it came to eating was one way of coping. When I was a kid and had a rough day in school, I would buy three or four candy bars on the way home and settle in for a little stress reduction, much like adults enjoy a martini after work.

With CLL this sort of thing returned at times. Marilyn and I are both pretty good cooks; we did, in fact, write a cookbook, or most of one. It was pulled by the publisher at the last minute because of a dispute with the California Milk Advisory Board over photo rights but it is apparently still "available" in Canada. We also know a fair amount about wine and are capable of whipping up a pretty decent meal to go with a bottle, with an utter obliviousness to the amount of butter and fat involved.

Good eating has its place, of course, but too much of a good thing is not so good. It is often the case that any method of escape -- be it food, alcohol, drugs, smoking, what-have-you -- only works so much before it becomes self-defeating. For me, the world of food, compounded by lack of exercise, became both a release and a trap.

So now Marilyn and I are exploring opera. It's not fattening and it's not ultimately depressing, even though the heroine always seems to die in the final act.

Metabolic madness

I used to have a pretty fast metabolism. Despite a propensity for sloth, accompanied by an appreciation for dining, fine and otherwise, I never managed to get too overweight.

Until I stepped on the scale April 9 and felt the planet tilt in the direction I was leaning.

218!

I had not weighed myself since January 31 and had, much to my horror, gained one pound a week. I now weighed more than I ever had in my life. At 6 feet tall, my Body Mass Index was 29.6 -- just .4 away from what the charts define as “obesity.”

Those charts put the high end of acceptable, "normal" weight for someone of my size at 184. Since my diagnosis with CLL in 2003, my weight has generally been in the high 190s or low 200s. Not perfect, but not way out of line, either. I was merely “overweight,” not even close to “obese.” My grandmother, familiar with the famines of old Russia, would have approvingly called me "zaftig."

Now, at the rate of a pound a week, I was heading down the slippery slope. I was threatening to get Jerry Springer Show big, Discovery channel documentary beached-on-the-bed big.

And the funny thing was, I hadn’t been eating more than usual. February was not Cheese Appreciation Month. March Madness did not come in the form of ice cream with a red licorice chaser.

But my clothes had been getting tighter. A long time ago I had reluctantly gotten myself used to size 38 pants, and now the prospect of 40 was looming. Size 40, which brought to mind images of the Stay-Puft Marshmallow Man, was a psychological barrier that I refused to cross.

The good news, as I stood on the scale, which is located next to a treadmill, is that I felt good enough to do something about it. This ability to exercise, which I had once taken for granted, had been closed to me for most of the preceding 13 months. Autoimmune hemolytic anemia, or AIHA, had robbed me of my red cells. There was a time last fall when merely walking up the stairs was an accomplishment.

But thanks to my R-CVP chemotherapy, which commenced October 22 and ended December 3, I was in a good remission that has, like a fine wine, only gotten better with age. Indeed, on this month's CBC, my red blood count, hemoglobin, and hematocrit were all in the “normal” reference range for the first time since January 2007. My ALC was stable at 12,000. My lymph nodes are not coming back, as near as I can tell.

So the numbers tell me I’m feeling more energetic, and my body has been telling me also, despite the additional pounds. It was time to start exercising every day, and also to eat more wisely. I began that very night, April 9, and my weight is now 212.

Some of you may recall that, when I first went on high-dose steroids and Rituxan to combat the AIHA in March of last year, I lost 20 pounds in nine days. I was at 184 before I knew it. As the steroids were tapered, the weight loss stopped.

I assumed that a lot of what I had lost was CLL from bulky lymph nodes, as well as body fat. But much of it was no doubt muscle, which is often one of the first things to go when people are put on high doses of steroids. And I was on high-dose steroids more than once last year. This year, as I was feeling better and able to do more, I began to notice that my thigh and calf muscles were considerably weaker than they had been before all this began. If I squatted down in front of the refrigerator to get a carrot out of the vegetable crisper, I needed to pull myself back up by holding onto the kitchen counter.

And then I ran across a fact that might explain why I was gaining weight while not eating any more than usual. For every pound of muscle you have, you burn 50 calories a day. If I had lost, say, 10 pounds of muscle in 2007, I was burning 500 calories less each day. And, you guessed it: Taking in an extra 500 calories a day will cause you to gain one pound a week.

Now that I know the game, I can play it. My goal is nothing short of weighing 184 or less, and of gaining back the muscle I lost and more. I am enjoying the exercise, which actually helps me feel more energetic. I am also enjoying eating less, and more healthfully. It may take a long time to reach my goal, but this is a lifestyle change, not a diet.

This is also a life-affirming act, for it is the start of preparations for the stem cell transplant that I expect to face in the not-too-distant future. Being in shape will help me avoid comorbidities -- such as heart problems, diabetes, and obesity itself -- that have been shown to reduce one's chances of transplant success. It will also help me weather the experience more easily. For example, if I am given a drug such as cyclosporine, which raises blood pressure, it makes sense for my blood pressure not to be high to begin with. Thanks to the new regimen, my blood pressure is already dropping.

So when I’m on the treadmill, I’m running for my life, literally. Or at least walking fast.

A spider-hunting we will go

The Irish have given us Yeats, Guinness, The Pogues, and some excellent cheese. Now it is time to add the Spider Catcher to that hallowed list.

I am a fan of gadgets, not for the sake of gadgetry -- though cleverness is always to be admired -- but for their utility. There are successful gadgets, such as the self-opening trash can I bought at Costco last year. It is still going strong and brings a frisson of pleasure whenever it opens its rather odiferous trap.

A less successful gadget is the hand-held, battery-operated "One-Touch Can Opener" -- as seen on TV! -- that I purchased at Bed, Bath and Beyond. You place it on the top of the can, making sure it has gripped the rim, then you press a button and it slowly whirs around until it has sliced the lid clean off. This works wonders -- and for some time kept me from despoiling the kitchen with tuna juice -- until the batteries run low. Then it stops in the middle of what it is doing, clings to the lid for dear life, and has to be removed by means of a screwdriver and pressing a less-than-efficient reset button. Cursing doesn’t actually help, though it passes the time faster. Somewhere during this process you realize that the time the can opener has saved you is nothing compared to the time it takes to deal with the battery problem.

One of the simplest yet most useful things Marilyn and I have ever run across is the Spider Catcher, billed as “the world’s friendliest way to catch and release insects.” Here in Arizona we get all kinds of interesting bugs in the house. You’ve got your brown spindly-legged spiders, which are about two or three inches in diameter. There’s the oblong "house centipede" that seems to breed in our stairwell. There’s Sparkle and Midnight, which are the names we have given to the two colors of Oriental cockroach -- known in polite company as "water bug" -- that make their appearance downstairs in the spring (and, of course, the roach that looks like a mix of the two, which we call The Unholy Love Child of Sparkle and Midnight). Finally, of course, there’s the occasional visit from that most disconcerting of desert dwellers, the scorpion.

The Spider Catcher, which hails from County Cork, is up to the task of managing them all. It’s easy and efficient, as well as humane, for you can walk the offending beastie out to the edge of the street and release it into the wild. Our old method, the empty yogurt container and piece of cardboard system (photo below), sometimes resulted in loss of limb if the bug ran a little too quickly in the wrong direction. Scorpions, which used to be subject to a relentless pounding by the nearest shoe, are now free to return to nature and infest the neighbor’s house as they see fit.

The Spider Catcher comes with a black plastic spider to practice on, which has been left here and there around the house. Marilyn sometimes stumbles upon it and forgets that it’s not real, which is always good for few moments of amusement.

Inventor Tony Allen presented a Spider Catcher to Prince Charles, who, I imagine, does not personally remove offending insects from his castles. In which case he is missing out on all the fun.

Barack Hussein Dukakis

I have always felt that the Democratic Party represents the better angels of our nature, and therefore I have always voted Democratic, at least on the state and national level. (I did vote for a Republican for mayor of Sedona once but it was a nonpartisan race and I didn’t hold it against him.)

The hardest vote I ever had to cast was in 1988, when Michael Dukakis was running against the first George Bush. By election day, Dukakis had proven himself to be an inept candidate, aloof and out of touch. Some of you may recall his advice to farmers in Iowa to grow more Belgian endive. What sealed the deal with the public was his answer to CNN reporter Bernard Shaw’s question in the last debate, in which Shaw asked, "Governor, if Kitty Dukakis were raped and murdered, would you favor an irrevocable death penalty for the killer?" Dukakis’s emotionless, analytical reply -- a rehash of his views on capital punishment -- missed a golden opportunity to connect with the public on an emotional level. Instead, he appeared to confirm insinuations by the GOP that he was an “ice man,” too out of touch with the average American to be trusted to lead the country.

Barack Obama has a lot more going for him than Michael Dukakis, both as a candidate of intellectual breadth and depth and as a warm, witty, and emotional human being. One of his gifts, up to now, has been his ability to connect to voters. And then he went to Marin County, California, and gave a speech. Marin County, for those who don’t know, is just north of San Francisco, and is, if possible to imagine, filled with even more wealthy liberals than San Francisco. It does not surprise me that Obama was attending a fundraiser there.

I had a friend in college named John who hailed from Marin. His parents had a lovely home and were gracious people, even if one had to remove one's shoes at the door so as not to despoil the pristine white carpet. His father was a doctor, his mother a psychiatrist, and they played string quartets on the weekends -- no, not on the stereo, but in their living room, with instruments and two friends. John’s high school chums lived in a house I will never forget, perched on a hilltop in Sausalito with a commanding view of San Francisco, worth well more than a million dollars even in 1976. These people were well-tanned and drank an enormous amount of white wine on their stunning terrace. I recall going to Grace Slick’s house to meet more of John’s friends, walking down the stairs past gold records hanging on the wall.

Marin, to my eyes, was a wealthy, wondrous, and insulated world. But the experience of growing up there had led John to rebel; he became interested in his religious roots and studied to become a rabbi. Beyond that, he fell in love with New Mexico and wore cowboy hats and boots and blasted Country-Western music on the radio to the consternation of his parents. His hero was Kinky Friedman. Eventually John settled in Albuquerque. He was still a liberal and dedicated Democrat. But culturally, Lone Star beer in hand, he was somewhat the opposite of where he was raised.

And FYI, for those on distant shores -- and this includes New York and Los Angeles -- a lot more Americans can relate to John than to his parents.

Apparently Barack Obama may not be one of them. I was more than a little distressed when my party’s likely nominee went to Marin County recently and rolled this oratorical gutter ball:

"You go into some of these small towns in Pennsylvania and, like a lot of small towns in the Midwest, the jobs have been gone now for 25 years and nothing's replaced them. And it's not surprising then they get bitter, they cling to guns, or religion, or antipathy to people who aren't like them, or anti-immigrant sentiment, or anti-trade sentiment as a way to explain their frustrations."

Ouch. Dukakis-in-the-tank ouch. Dukakis failed the gut test. Obama is starting to require a little too much Pepto-Bismol for comfort.

It's not that Obama said people are bitter. We all understand that unemployment can send people into anger and despair. Nor does anyone argue that there will always be people who will take their frustrations out on others, however unfairly. The history of this country is filled, after all, with far too many examples of xenophobia and racism.

The problem is that Obama went one step further, ascribing people's passion for things that some Marin-ites might dismiss as "downmarket" -- such as guns and religion -- to a negative motive: bitterness about economic decline. The implication was, whether he meant it or not, that if their economic situation improves, residents of these towns would become less interested in guns and God and more tolerant of illegal immigrants. Perhaps this sort of armchair sociology appeals to a closed-door audience in Marin, but it is wrong on so many levels and betrays a lack of understanding of what makes this country tick.

One reason John and I could relate is that, for the most part, I grew up in small-town Arizona. Around actual cowboys. And Indians. And people who have guns. People who go to church. Like John, my experiences led me in somewhat the opposite direction from where I was raised. That's how I ended up in Santa Cruz, California, where John and I went to college.

But I've been to the rodeo as well as the opera. And I can tell you that most people do not have guns because they are bitter. They have guns because they like to hunt, or because they like to shoot bottles off fences like I did when I was a kid -- every boy I knew had a BB gun -- or because they view guns as a means of personal protection. They go to church, not mainly because they are upset about things -- though religion certainly is a means by which some people cope with the question of why bad things happen to good people, such as those who come down with leukemia. They go because it gives them comfort and structure and community and an answer to cosmic questions we all wonder about. They are not anti-immigrant because they are frustrated -- they are frustrated with illegal immigration, largely out of principle, because they believe other people should obey the laws just like they have to. This is called “fairness.” And when it comes to trade policies, many Americans think a goal of these policies should be to safeguard American jobs, rather than see them shipped overseas to the benefit of multinational corporations looking for cheap labor. Is this clinging to a sentiment out of frustration, or is it -- oh, I don't know -- common freaking sense? (For an excellent analysis of the full range of problems with Obama’s comments, read this at Politico.)

Obama’s remarks made me cringe because they remind me of the misunderstanding some people in my party have of what it means to live in Flyover Country -- that is, the space between the two coasts. What Obama doesn’t get, apparently, and what he needs to get if he expects to be president, is that rural and/or red state voters are a lot more complex than he gives them credit for.

We are all products of our experiences, and one reason I give Obama a pass on the Rev. Jeremiah Wright issue is that I do not know in my heart what it means to be black in America. But I can see, given our history and the struggles for Civil Rights that I witnessed as a kid, where the bitterness of some African-Americans comes from.

Conversely, understanding towns like those I grew up in, or those in which people in rural Pennsylvania live, is a bit out of Obama’s experience. The problem is that he is running for president and cannot win the election without the votes of at least some of those denizens of Possum Hollow.

All this may drive me to drink, as it has Hillary Clinton, who is now a good ol' girl who downs shots of whiskey and tells stories of her duck hunting days of yore. This is Clintonian political theater at its most entertaining, and Obama’s remarks may yet save her candidacy.

And the irony in all this is that if Obama is the nominee, Republicans -- the party of tax breaks for the wealthy, corporate welfare, and fringe social policies -- will again have the opportunity to portray the Democrats as the ones who are out of touch.

That's not reality, really. Which is why I vote Democratic. And perhaps this year, given the state of the economy and the endless war in Iraq, people will overlook some inappropriate comments. Even so, I'll be clinging to prayer if Obama becomes the nominee.

Dr. O’Leary’s bull, or when “normal” isn’t normal

I keep my CLL history -- things like CBC results, FISH tests with xeroxed blotches that are supposed to signify something, lengthy dissertations by experts and not-so-experts upon my condition -- in file folders, organized by year.

The year of diagnosis, 2003, doesn’t have much in it. By now, in 2008, the files are 2" thick when stacked on top of one another. The year 2007, in which autoimmune hemolytic anemia greeted me like the Huns greeted Rome, accounts for fully half that thickness.

And speaking of thick, let’s open that file for a minute, shall we? I recently got the complete physician’s notes from Dr. O’Leary, the man who managed, and then mismanaged, my AIHA. O’Leary was nothing if not thorough in these reports, each titled “Follow-Up Office Visit” and most of them making reference to my node-filled “bull neck.” Well, moo. Or snort. Or something.

I remember a couple of times during these visits talking to O’Leary about my haptoglobin, a protein that people hip to the terminology abbreviate as “hp.” When your hp tanks, as measured by a blood test, you’re in trouble. When red blood cells are actively being destroyed, hp disappears faster than it is created.

I had noticed, at one point during my travels, or travails, that my hp was declining, even though it was within the “normal range” (or “reference interval”) of 34 to 200. I had the sense that this could be a problem, and I asked O’Leary about it. He replied that there was no need to worry, it was within the normal range.

Later that day, after I left, he made his dictation, which contained this comment:

“We discussed at length his other laboratory tests. His haptoglobin remains normal, although it is drifting down a bit. It was around 170, then it was 67 and now it is down to 49, although it is normal.”

Well, you guessed it: It continued to drift down. Four weeks later all hell broke loose and the AIHA was pounding at the city gates again.

There are a number of lessons to be learned here. One: Patient, trust your intuition. Two: Just because a result is “normal,” that does not mean an important trend can’t be identified and appropriate action taken. Three: I really wonder whether O’Leary should be practicing medicine. In the United States. On people. (Drifting down “a bit”!)

But let’s focus on number two: Reference intervals, normal values, and the like are not licenses to not worry.

Some of this depends on what is being tested: ZAP-70, for example, is positive once it passes a certain point, usually 20%. It doesn’t matter whether you are 22% positive or 82% positive, you are positive. As far as I can tell, and I once asked Dr. Terry Hamblin about this on the ACOR CLL List, the level of positivity does not count as much as the fact that you are positive.

Red blood counts are another matter. Many of us see our hemoglobin drifting down as the disease progresses, a result of marrow impaction. Your HGB might be 15.6 one year, 14.3 a year later, 13.1 a year after that. These numbers are all within the “normal range” but they signify a trend that tells us something important.

The same is true with haptoglobin. That is the point of this post. In your test results, look for trends. Do not be lulled into thinking that just because the result is still “normal” that you don’t have anything to worry about. (I know it is especially hard to argue with doctors about this sort of thing. O’Leary may have thought I had a bull neck, but I think he was bull-headed; he tended to dismiss my concerns, which almost ended in disaster, and which did end with me switching doctors.)

I have alerted Dr. Belle to all this, and we are watching my hp for any signs of a downward trend. We are also keeping track of my LDH, which would increase with hemolysis, and my bilirubin, which would do so as well.

And so far, so good. I continue to show improvement in the red counts, which are either "normal” now, or tantalizingly close. The icing on the cake is that my lymphocyte count has slowly drifted downward since my last cycle of chemo four months ago.

My only discomfort is in knowing that somewhere out there Dr. O’Leary is telling a cancer patient not to worry, that their test results -- despite evincing a trend that, if it had a mouth, would bite them -- are “normal.”