Thursday, July 30, 2009

More on the Wedding

I've recently discovered that it is impossible to schedule a short date for a minimal, sensible wedding because, at some point in the process, fiancées connect to a primitive female communications sub-carrier, which appears to men to consist of slow, deep-in-the-jungle drumbeats, a link that removes the discussion from anything a man is capable of understanding. I suspect all women of all races, ages, and nationalities have an innate ability to receive, understand, and transmit these messages. Requirements are flowing through, at first slowly, now in a torrent:
  1. The wedding must be in September. (I'm punctuating these items with periods because of the implied finality.)
  2. I must buy a new suit, which must be gray (I've agreed, and we've agreed to disagree on what constitutes a "gray suit." I'm shopping for formal Morning Dress in protest).
  3. There must be a new wedding dress, and new clothes for her children.
  4. We must have a professional photographer at the wedding.
  5. I must buy myself a wedding ring in addition to her ring (or the women will gossip that I have another lady somewhere).
  6. There must be invitations for wedding and after-wedding activities for a variety of special relatives. No, a telephone tree of calls is NOT sufficient.
  7. There must be a party afterward (I've added mariachis, and delayed it a few weeks).
And these, uh, requests, keep coming, and with greater frequency. Apparently, the more time there is to plan, the more planning that must be done.

For the most part, I've learned that "yes, dear" is the sole correct response. I make small noises when I think the cost will be too high.

Here's Ivonne's picture taken yesterday inspecting the outdoor wedding facility after we got the marriage license:

Ivonne. Click for on picture for larger version.

Wednesday, July 22, 2009

Potpourri #1: Wedding, Ulysses, Bendamustine

Being miraculously temperamentally well-suited, Ivonne and I are getting married either at the end of this month or the beginning of August. In some sense it's so simple as to be laughable: in California, with two forms of ID and $50, you can do it almost as a drive-through. They should have a fast-food menu as well.

A traditional Mexican wedding walk in Vera Cruz

I was working on an elaborate metaphor between the visual and the temporal horizons, the purpose of which was to demonstrate the many instances in which unattainable goals need not be dropped from the End Game, when some jackass remarked that we are truly all in the same boat (not the Penelope) because we're all going to die and we don't know when. That converted much of my post to a stinging rebuttal, but the post then insisted on evolving into a critical analysis of Tennyson's astonishing poem Ulysses. That subject, a literary analysis, will probably come out separately. It's about how a old man chooses to fight his End Game.

More work and aspirin are needed to sort out these interrelated topics.

During the second cycle there was a brief response followed by a huge upward spike. After moments of alarm and despair, I realized we had been confusing any response with a good response. Have a look at my chart.

Here's the background: just prior to the first cycle, it was decided to go light on the dose (120mg) to see how low the CBC numbers would go before increasing to the recommended dose (160mg). The CBC nadir occurs about three weeks after the infusion. Because we saw what appeared to be a good response, we stayed at the lower dose for the second cycle, figuring that, with alklyating agents, there is a kind of trigger level above which you get a good response and below which you get no response. This time we got a minor response followed by another huge upward spike.

We had forgotten the earlier logic and almost quit. So, up went the dose to the documented optimal dose for cycle three. This cycle should be decisive. For safety, it is also time for another CT-Pet scan, just to make sure my skeleton looks as good as I look on the outside. It may become necessary to fight small battles with radiation, which I have not needed since 1998, to preserve the skeleton as long as possible, especially the spine.

Wish me luck.

Friday, July 10, 2009

Today is My Eleventh Birthday!

I do believe in rebirth, although not in any religious sense. There is something quintessentially American about the idea that no matter how badly you've ruined your life, you can always pack up your essentials and light out in the middle of the night, not stopping until you're far enough away that no one knows (or cares) who you are. Because your history defines and confines you, your old self must be left behind in order to be free. This has been the central theme of American literature from its earliest beginnings to today. Every immigrant has understood this fact. It is not a myth. Call me Ishmael.

Usually, they go west

More universally, you will recall that Odysseus claimed that when he had had enough of adventuring, he would walk inland carrying an oar on his shoulder. When he got to a place where no one knew what an oar was, he would retire there.
The transformation, however, is not complete. Life is something you understand. By escaping your past, you can do what you need to do to write a new history for yourself without making your earlier mistakes. You're still on planet Earth, after all.

On the other hand, like it or not, something fundamental changes on the day you're diagnosed with an incurable, universally-fatal cancer like multiple myeloma. Everything seems the same as the day before except for you. The family is still the family, the house and the job are still the house and the job, and you still unaccountably plan to live in Cleveland when you retire. Slowly, though, the deeper truth begins to seep through the fear, confusion, and self-pity: although everything appears to be the same, you no longer know what anything means. The language has changed. It is the most profound transformation that can happen to a person, like being dropped into an alien culture on a different planet. Or perhaps, afflicted with complete amnesia, you look about the rooms of your life asking, who was this person?

Eleven years ago today, lying face down in a ring for the amazingly painful procedure called a CT-Assisted Needle Biopsy, I was diagnosed. On that day I left my old life behind. On that day I was born again.

On that day my purpose became to restore purpose to my life. What meant the world to me yesterday had been stripped of meaning. Beyond an obvious need to understand the medical calamity that had befallen me, I did not know what to do. Few of us do.

Although multiple myeloma can, for an unlucky few, move with bewildering swiftness, the vast majority of the recently diagnosed will have years of life left. In 1998, when I was diagnosed, the median survivability with conventional chemotherapy was three years: with a bone marrow transplant, it was five. Today, with newer treatments and smarter application, the numbers are much better.

Once out of immediate danger, the questions start pouring out. What do I want to do with the rest of my life? What should I do? What must I do? What is important and what isn't? A complete reevaluation is clearly in order.

In my case, at fifty-three years old and at the height of my career, I found myself retired, losing a huge part of life that had given me structure. I could hardly replace the intensity of purpose work provided with my primitive ideas of retirement. Was travel important to me? (Quick answer: I've traveled out of San Diego twice in eleven years.) I had recently been separated from my wife: what kind of relationship was possible for me now, if any? How much of the time I have left can I afford to devote to music? Is there a book I need to write? Before diagnosis, I thought I had all the answers. Afterward, I hadn't a clue.

Like a newborn, I was thrust into a world I could see but didn't understand. A process of exploration and testing had begun. I would have to learn again what everything meant. I was, well, born again, recognizing everything, understanding nothing.

In a way, the process has been salutary. As Samuel Johnson said, "Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully." Although there always is a sense of running out of time, there is also a massive decluttering, an improvement in the signal-to-noise ratio, a quasi-spiritual journey with many surprises along the way. For those not in denial, a new sense of priorities eventually emerges, priorities that often are far more thoughtful and sound than those they have replaced.

Just as every coin has two sides, the catastrophe of diagnosis is balanced by a better set of values. I want to leave you with one other thought as I set out to celebrate my eleventh birthday. I'm not a Buddhist, but here's the koan I live by: every curse has a blessing on the other side. The challenge is to find it.

Although I've lost the long future I had imagined, I must confess I would have botched much of it. My time now is shorter, but the quality is ever so much better. The dross is being purified away: what is left is solid gold. Despite the pain and uncertainty of the fight against cancer, I've achieved a happiness more solidly grounded than before. You can too.

Wednesday, July 8, 2009

Mired in the Last Ditch

Click to Enlarge

No sane person would want to linger in the Last Ditch: it is deep, dark, and dangerous. Yet, once mired in it, escape is problematic. The sides are steep and slippery, the way out unknown, and there are a disturbing number of corpses at the bottom. I want out of here!

As I show on the chart above, there was no response for two weeks after the first bendamustine infusion (May 26th), then two weeks of good response followed by a return to advancing cancer. The second infusion was June 23rd with no response as yet, just like the first time. The latest tests were on Monday, July 6th: the results will be known next Friday or Monday. If it behaves as it did before, we’ll see a drop in the numbers. If it doesn’t, we’ll have to increase the dose.

If I'm not responding, we may have to find another way to crawl out. However, at this moment we don’t know if I'm responding, nor what that other way out might be.

The anxiety this week is enough to loosen ones teeth. Usually, the strategy is to stretch out the measurements as much as possible, but because I'm pioneering this chemo here, I'm measuring every week. That way we'll all learn how the drug behaves in at least one patient. Meanwhile, every week for me is agony. Besides, look again at the chart: when is the right time to measure?

I’m tempted to call a hematologist at random in Germany and ask how this stuff usually behaves. Germany has been using bendamustine as an anti-myeloma agent for forty years; however in America I’m apparently a pioneer. Not that a word from Herr Doktor could change the outcome, but perhaps there would be some relief from the wretched anxiety that is chewing on my backside as I try to find a way out.