The sea otter with CLL

Chronic lymphocytic leukemia is not the province of people alone. If you've been around Google a few times you've run into references of CLL in dogs and cats. Indeed, they're pretty much subject to the whole range of leukemias and lymphomas that we humans are. When it comes to CLL, our pets get some of the same treatments that we do. CLL kitties can live a year or two if given chlorambucil. French researchers found that dogs responded to a combination of prednisolone and melphalan (the latter being an older drug that is rarely used in human CLL today).

The animal world has lost its first CLL celebrity, a sea otter named Nyac. She was a 20-year-old survivor of the Exxon Valdez oil spill and a popular resident of the Vancouver Aquarium. Whether or not the oil spill had anything to do with her CLL is unknown, but it didn't seem to interfere with her longevity. Sea otters usually live 10 or 15 years and some have reached 20 in captivity, so she died at a ripe old age.

A statement by the Vancouver Aquarium on Tuesday read in part:

"Nyac was at the upper limit of a female sea otter life span. Over the last 2-3 years Nyac has been showing signs of her advanced age most obviously a gradual slowing down in her general behaviours. In July, Nyac suddenly showed limited energy and mobility. The Aquarium’s veterinary team immediately began their work in an attempt to determine a reason for the sudden deterioration of Nyac’s health. An MRI revealed a serious inner ear infection however blood test results showed a more serious underlying disorder.

"With treatment, Nyac’s behaviour improved and since that time she had been under close observation by the marine mammal and veterinary care teams. Last Friday her condition worsened and she was diagnosed with chronic lymphocytic leukemia.

"Nyac was placed under 24-hour care with key staff in attendance. Her condition continued to worsen until Nyac passed away early this morning.

“Nyac was a very special animal and had been placed under palliative care. Our entire veterinary and marine mammal care team is, of course, devastated this morning. Lymphocytic leukemia has not been previously reported in sea otters and because there is some association with contact with petroleum in other species, she is an important animal. From a medical perspective, Nyac is also very important because of her long life. Even as we’ll miss her we know she’ll continue to provide vital information on the long-term effects of oil exposure.” said Dr. Martin Haulena, Staff Veterinarian, Vancouver Aquarium."

Below is the YouTube video that made her famous. Get out your hankies.

A house of cards

What a mess we’re in. As Chris Dodd put it, we’ve entered an era of privatized profit and socialized debt.

Greed is at the center of it all, greed and lack of meaningful oversight, not just on the part of government regulators but also on the part of corporate elders who should have known better, or should have cared more.

Back in 1984, Marilyn and I bought out first house at a cost of $87,500. It was a definite fixer, an older home with an in-law apartment that had been added downstairs. The couple who owned it were divorcing. She lived upstairs, he was consigned to the dungeon, which he trashed. Termites had built themselves a magical kingdom in the walls. The fireplace was leaning away from the house. Roots from a giant willow tree routinely plugged up the sewer lines. It wasn’t in the best neighborhood. But it was just about the last house in Berkeley, CA for under $100,000 and we were lucky to get it, with 20% down and a 13.25%, 30-year fixed loan.

Jumping through hoops to get financing was expected, and made some sense. The lender needed to know that we could afford to pay the mortgage.

That was back in the good old days, when homes almost everywhere in the country were in reach of people with average incomes. I took a look at zillow.com, just to see how our first home has fared. Riding a real estate boomlet, we sold it in 1989 for $200,000, a record for the block. The boom steadied and the people who bought it from us sold it in 1994 for $235,000.

They’re probably kicking themselves. By 2003, it was worth around $580,000. In mid-05 the old dump reached its peak value, $818,000. Today, it’s $661,500 and heading south.

How can people pay for such huge mortgages? Smoke, mirrors, and lemming-like behavior. Things like 100% financing, or 80/20 financing, interest-only loans, ARMs from Hell, HELOCs, refinancing, issuing loans to the insolvent, paying routine bills with credit cards, which were passed out like candy.

As Suze Orman has repeatedly pointed out, financial management skills should be a required course in high school. Just because someone offers you something you can't afford doesn't mean you have to take it.

This madness started in California, then spread to Nevada, Arizona, Florida and a lot of other places that were considered desirable. I have been to all these places, have lived in two of them, and let me say here that none of them are THAT nice.

Anyone with common sense could see that this could not continue. Our Berkeley hovel more than tripled in value from 1994 to 2005. Were they thinking it would more than triple again, be worth $2.5 million in another ten or eleven years? And who did they think (in their right mind anyway) would buy it at that price?

That we are now in a financial crisis, built on bad mortages, should really come as a surprise to no one. It was almost like everyone, from Wall Street to Main Street, was doing financial crack. Everyone ran on overdrive, pocketing money that wasn’t there.

Now this binge has to be paid for, and we’re all going to suffer. Like most Americans, my visceral reaction to the idea of a $700 billion bailout involves a fair amount of disgust. I don’t like rewarding the avaricious. Especially when this money could be better spent on things like health care, cancer research, and so on.

But I am told that we have no choice. That’s probably the case. We have built ourselves an enormous house of cards, not just in real estate but in credit and investments, things that drive our economy and provide financial security and opportunity. It's a monument to folly that we will be paying for, one way or the other, for a long time to come.

My visit to the NCI, Part 1

Marilyn and I like road trips. We’ve taken them for as long as we’ve had something with four wheels and an engine.

In the old days we went car camping out of our Toyota Celica, pitching a backpacking tent in Death Valley, which threatened to blow away during a dust storm -- with us in it. Then we upgraded to a Volkswagen Westfalia van with a pop-up roof, in which we went over the Rockies in first gear. Our cat, Tut, used to nap on a picnic basket wedged between the two front seats. This was followed by the RV era, which involved towing a house (aka fifth-wheel trailer) behind us. Now we’re back to square one -- just a car -- though we prefer motels to tents these days.

And now that I have chronic lymphocytic leukemia, we’ve combined road tripping with doctor visiting. In 2006, we set out for Columbus, OH, home of Dr. John Byrd. And in July of this year we took off for Bethesda, MD, home of the National Cancer Institute and National Institutes of Health.

We were going because I was looking into a clinical trial that offers free reduced-intensity- conditioning stem cell transplants using matched unrelated donors -- the popular mini-MUD. I need an unrelated donor because I have no sibling donors; my two brothers and one sister are all half-siblings. Since my health insurance won’t cover transplants, participating would be like winning a million-dollar lottery of sorts. Of course, I’d rather win a million dollars and not have CLL, but that’s another story.

CLL Topics published an article about the trial in January, one month after I completed my R-C(V)P therapy for CLL and autoimmune hemolytic anemia (AIHA). The year 2007 had not been kind to me: AIHA was diagnosed in March, treated, and followed by relapses in July and October, each worse than the one before. Not only was my quality of life going down the tubes, it appeared the AIHA might be uncontrollable. The idea of a transplant, which had once been fuzzy and distant, was now taking on some immediacy. It was prudent to look into it seriously, especially as I had no idea in January how long my remission might last.

One in seven million

So I called the transplant coordinator and explained my situation. He said I was, on the face of it, worthy of consideration.

The first step would be to see whether there was a 10/10 HLA match, which is required for participation. (A less-than-optimal match equals less-than-optimal results, both for me and the trial.) A blood kit with two tubes was sent from Bethesda. I had the blood drawn at a local lab and then Fed-Exed the package back to the NCI, along with copies of my medical records.

It took several months to get any answers, partly because the trial was stopped at one point to allow for a routine review of how the protocol was working. It turned out that the six people who had undergone transplants were doing well, and so accrual of patients resumed. A total of 20 people will eventually be enrolled.

The NCI first looked at my blood on low resolution for 6/6 matches, and when a number of those were confirmed by searching worldwide donor databases, moved onto the next step: testing at low resolution for 10/10 matches. Twelve were found, and this was followed by the final search at high resolution, after which the transplant coordinator called with the news: Of the twelve 10/10 low-res matches, only one donor, out of seven million in the databases, appeared to be a 10/10 match at high res.

But one, as he pointed out, is all it takes.

He added that the next step in testing, should I be provisionally accepted into the trial, would be to contact the donor and make sure he or she had no infectious diseases and was physically able to undergo the donation procedure.

The testing and donor searching that had already been done -- which would have cost me $15,000 or more had I been paying for it myself -- thus answered a very important question: Are there donors for me and is an adult stem cell transplant therefore going to be an option now or in the future?

The answer is -- and it’s fortunate that I am not a Type A personality -- “maybe.” It is worth noting here that the 5-million-strong U.S. National Marrow Donor Program database returned 22 low-res 6/6 matches when I used their website's HLA matching gizmo last year. In retrospect, those results are pretty much meaningless. When the rubber meets the road in the form of further testing, 22 6/6 matches can mean bupkus, or close to bupkus. (For those unfamiliar with road trips, Bupkus is just east of WaKeeney, in central Kansas.)

Having completed the HLA preliminaries, the transplant coordinator wanted to move ahead to the next step, an “informational meeting” with one of the doctors involved in the trial. I could have done this by phone, but I hate talking on the phone. You can’t see who you’re dealing with, you don’t have the presence of mind that you do when you’re there with all five senses, and you can’t grok the facility, get an impression of what actually taking such a big step would be like. So off we went.

Did I mention that this was also a good excuse for a road trip?

Meanwhile, back at CBC ranch

In the months following my three rounds of R-C(V)P, my CBC continued to look better and better. Not only had the hemolysis stopped, but my red counts were making a slow climb toward normal. My lymphocyte count was continuing to drift downward. My lymph nodes, which were knocked back to the point of being less swollen than they were at diagnosis in 2003, were stable. By the time we went to Bethesda, my red counts had crossed the line into the low-normal range and my Coombs test, though still positive, was now only “microscopically” so. The nodes had come back a little, but not much. My spleen and liver were behaving themselves. The lymphocyte count had dropped to its lowest level since I had the chemo eight months before.

In other words, I was doing better than I could have hoped when I finished the R-C(V)P in December and approached the NCI in January. And so the transplant immediacy factor was beginning to diminish. When your back is against the wall, you do what you have to do, regardless of the risk. When the pressure is off, you look at things from a different perspective, especially when you are considering taking a step that has a 15% to 20% chance of killing you.

But the prospect of having just one donor added a little drama to my decision as we traveled east. Do I seize the moment before there is no donor at all? Or would it be reasonable to expect that more donors might come along in the future?

And are those even the right issues to be focusing on?

For as a learned friend once told me when I was young and we were all sitting around a campfire drinking a lot of beer, “The thing in life is not to know all the answers but rather to ask the right questions."

In Part 2, I will discuss the questions I asked, the answers I found, and the general consensus to date when experts grapple with the question, "Who should have a transplant when?"


We stopped to see the giant Van Gogh sunflower canvas in Greatland, KS. Apparently Van Gogh was taller than we thought and traveled further afield than is commonly known. The middle photo is of our cat Pyewacket in the driver's seat on our (doctor-visitless) road trip to Nova Scotia in 2004. Both of our cats have enjoyed traveling; we adopted Pye at an RV park. The top photo shows Tut enjoying a claw-scratch at a campground, circa 1987. That's a 1971 VW.

Then and now, Part 2 -- Five years later

Wednesday marked the fifth anniversary of my CLL diagnosis. I am now entering year six of a journey that, according to survival statistics, should last another two to nine years. At which point I will become permanently out of print. Crossed out by the Big Blue Pencil. Remaindered at the bookstore in the sky.

Unless, of course, I get lucky. Which, the statistics show, can also happen.

My feelings about chronic lymphocytic leukemia are a lot different today than they were five years ago. Then, it was a challenge that demanded my full attention: How can I get a grip on the unfathomable to outwit the unthinkable? Now, the adrenaline response to diagnosis is gone. The war of attrition has set in. CLL is less of an imminent threat and more of a lethal annoyance.

This has led me to conclude that, as much as I can, it’s time to get on with my life. In the words of that sage philosopher Doris Day, “Que sera, sera. Whatever will be, will be.”

Over the years I have learned what to expect. I know how the disease progresses, how drug resistance develops, how I respond to therapy, how clinical symptoms have impacted my life. I have seen the pace at which new therapies come along and I know that at the end of my CLL journey, barring something fairly miraculous, there will be a transplant of some kind. And that it will probably either cure me or kill me, and that nothing I do can control the outcome with certainty.

I am along for the ride. Over time I have come to accept my situation, and very little good can be said about it. CLL is a bitch. But I am getting used to it. As the days go by and the crises come and go, it feels less like a roller coaster and more like a bumpy road. And so the experience has taken on a more even feel. It’s not new anymore. It’s just that thing you do, that thing that happens to you.

I used to look for silver linings, and I suppose there have been some. For example, getting to know other people affected by CLL has brought out my empathetic side, made me more comfortable speaking the language of emotion and acknowledging pain and loss. I learned through this blog and online forums that I could turn my experiences into something that might be of help to others. When things have gotten bad for me personally, I have found an inner strength I didn’t know was there, an ability to hold things together and stay focused and not freak out. You could say that I have grown as a person. The shorter my life threatens to become, the fuller it is.

But this is a war of attrition, and that takes something out of you. The silver linings usually pale in comparison to the clouds. There is a slow drain of resources: emotional, financial, and in the form of dreams deferred and plans altered. Five years ago, CLL had an air of unreality about it; now it has been around long enough to have impacted almost everything in my life. It is impossible to deny.

After five years, I have also learned that knowledge is imperfect. For example, in the time since my diagnosis, FISH testing has become part of the diagnostic and prognostic workup. But the test looks for just a few things, and many lay hidden, unseen players in the game. There is a lot that the experts still don’t know about CLL, and the learning curve requires patience; the first chromosomal abnormality (Trisomy 12) was discovered the year I graduated from college, 1979. And in the words of Dr. Terry Hamblin, “We still do not know what it means.”

On a more practical level, I have learned that knowledge can only take you so far. Understanding the tests and treatments and all that is essential. But how your disease progresses, how it reacts to therapy, these do not always follow the rather incomplete book. CLL is notoriously idiosyncratic, and there’s a lot of trial and error when it comes to managing it. There is no way to know for whom the bell curve tolls. And so I have learned to expect the unexpected.

Over time, I have also come to see that knowledge only takes you so far, for reasons that have nothing to do with medicine. The quality of the CLL experience is something that evolves in part from your reaction to it. I am talking about the emotional and spiritual component, what the clouds and their silver linings, the thunder and lightning, does inside of you. There’s who you are going into this and who you become.

In my case, I was afraid of death and am now less afraid. I’m not happy about it, mind you. But I’ve gotten used to the prospect.

I have also found some balance. A CLL diagnosis comes as a shock, and the ongoing experiences of getting test results, visiting doctors, being treated and then relapsing, all these things can create a life lived on a medical treadmill. This was the case with me, and then I realized that when the treadmill slowed, the sun was still rising and shining on a planet that contains more than B lymphocytes. The beauty in life began to reassert itself.

For a time the world is CLL, and then it becomes the world again.

Knowledge only takes you so far. The whispering in your soul takes you the rest of the way. This is where CLL meets the cosmos. Where a terrible burden meets its context. Where the stars float and you do, too, set loose by the unbearable lightness of being.

CLL is nothing more than one possible end to your story.

So keep writing.

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.