Sunday, September 28, 2008

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.

Thursday, September 25, 2008

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 i
n 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, 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 fr
om 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 thi
nk (in their right mind anyway) would buy it at that price?

That we are now in a financial crisis, built on bad mortages, should rea
lly 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 investm
ents, 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.

Tuesday, September 16, 2008

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 ou
r 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 ro
ad 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 n
o 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 mont
h 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 routi
ne 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 tr
ansplant 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 ne
xt 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 HL
A 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 c
ontinuing 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.

Saturday, September 06, 2008

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 unfathom
able 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 st
ay 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 rat
her 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 an
d 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.