Sunday, March 27, 2011

I Take It All Back!

From August, 2010 to today. Click on Me.
Once upon a time, I understood my labs well enough to know what they meant and, together with past data as shown on charts like this, where I was going. This is the best way I know to chart a course through the crises of cancer.

This chart plots my light chains (kappa, lambda, and the ratio of the two) from last August to last week. If the red line, which represents my tumor burden, resembles a roller coaster, I very much feel as if I've been riding one. On October 13th, I was clearly rolling down a steep slope toward remission. If I straight-lined the descent into the future, I would be in remission by Thanksgiving! The ordeal of the allogeneic transplant was giving me my life back!

Except it didn't. Instead, the red line climbed sharply upward. By Thanksgiving, my Freelite blasted through 53.8 and I was shopping for a cemetery plot. The transplant had failed, or so I thought, distraught. (Lonnie, plot, thought, distraught? Well, as they say, every writer is a failed poet.)

Yet the next measurement showed a steep decline, just as if the coaster had gone over a peak and was plummeting deliriously downward. By January 24th of this year, the cancer had dropped to 16.4. Well, I thought, the previous peak was a meaningless hiccup. The war between my new immune system and the ever-evolving cancer was whipsawing me between victory and defeat. Again, I convinced myself that the chart was showing me on a path to remission. Finally, after setbacks, my immune system was beating the cancer!

Until one month later, to the day, when the coaster jerked upward again, flattening my insides. At that point I gave up trying to prognosticate. I've been charting my myeloma for many years, always knowing where I was and where I was going, but what I see now is unpredictable. An allogeneic transplant put me on a whole different ride, one alternatively elating and terrifying. The techniques I had developed to master the inner game of cancer were no longer useful. I am hurled up and down, back and forth, expecting at any moment to be throwing up all over myself.

Yet, last week, a month later, the numbers went the right way again, with kappa reaching its lowest point in several years. At the same time, the rest of my markers, which aren't on this plot, were all good. Alkaline phosphatase, for example, is again normal, a clear indication that my bone lesions are stable.

What am I to think? How do I find peace of mind on this uncertain, torturous, terrifying course?

So I had Excel, which does the charting magic, produce a trend line over the kappa data by linear regression, the result of which is the straight black line on the chart. A trend line reduces complex or confusing data to a simple but often usable representation. In essence, it replaces the ups and downs of the roller coaster with an equivalent, smooth path. I like the analogy to a carnival ride because overall a coaster is always descending despite its temporary upward swings. To briefly change metaphors, a trend line plots the forest over the trees.

Neither elated nor depressed, I am comforted by the obvious relevance of the trend line. It says to me, regardless of the wild variations, there is meaning in the numbers, and that my new immune system is winning the war even though it has lost a few battles. The terrifying ride may have been worth it after all. (OK, Lonnie, rampant alliteration and four metaphors in one post — storms at sea, roller coaster rides, forests and war?? Enough already!)
My Life

Friday, March 18, 2011

Potpourri #3: Pictures, Progress, Politics, and a Puzzler!

Three Months after Autologous | Eight Months after Allogeneic
Be sure to click on the photo above to appreciate the full catastrophe, especially the loss of fifty-five pounds from the allo, making me but a shadow of my former self. While I haven't simply been waiting for my body to recover naturally, which it seems disinclined to do, it is clear that once my back heals up from the kyphoplasty, full recovery will require serious exercise. This will be difficult for me because of my inherent laziness.

My Bell's Palsy has slowly improved, albeit with a relapsing/remitting course. Here's what I looked like at Christmas, when it was at its worst:

I'm the one on the left
Because the tear ducts for my left eye are paralyzed, my vision has drastically deteriorated. If I lie on my back, my eyes dry out painfully. At night I have to wake up two or three times to use eye drops (Hypo Tears are the best, although expensive). If I am upright, too much fluid distorts my vision — I am constantly dabbing my eyes with tissue and mechanically blinking with my fingers. Finally, if I look down, both eyes flood (I think the right eye floods sympathetically). 

Click on the Chart to Enlarge
I had expected to see another reduction in kappa, but, instead, it's unchanged from last month (+5.5). I like the drop in lambda, which is as inexplicable as its recent rise. I was apprehensive that my cancer had mutated into another type, as it sometimes does. Chemotherapies for myeloma tend to be mutagenic. Lambda is more troublesome than kappa because the particles are too big to pass easily through the kidney. The resulting accumulation can lead to kidney failure. I am breathing more easily now that I've seen the drop in lambda.

My labs used to tell me where I was and where I was going. After the allogeneic transplant, I find myself living an unpredictable life in an alternate universe largely devoid of explanation. I hereby relinquish all forms of medical prognostication. They no longer help.

I hope you will permit me to repeat a useless but sadly valid observation: wars are incredibly easy to start but deucedly difficult to stop.

One of the few wars that ended quickly began with the invasion of Grenada, codenamed Operation Urgent Fury, on October 25, 1983. It lasted about a day. Of course, the population of Grenada was approximately 100,000, the size of Davenport, Iowa. The next-shortest was The Battle of San Juan Hill, which began on the First of July, 1898, and ended three days later.

Teddy Roosevelt is left-of-center, as he was in life
In recent history, wars seem to have become permanent. I refuse to make the analogy to George Orwell's 1984, where perpetual war was considered to be politically expedient and therefore desirable (see Praederitio). Orwell is by far my favorite essayist.

One of my daughters, who shall go nameless lest this post be used later against me in her murder trial, came running up to me with alarming news: her computer had shut down and refuses to come back up!

The children's computer, which was my old game machine, a hand-built speed demon, had complained of USB over-current (rather like a blown fuse) before shutting itself down. I disconnected all of the USB devices, but, still, the message and the shutdown. I was baffled.

Then I noticed that a case fan had burned out. The spindle was charred and the blades were difficult to turn with my fingers. Could the error message be incorrect? So I put in a new case fan, turned it on, and got the same message. More bafflement. The second time I tried booting up the machine, it decided that death was better than torture by USB and promptly shut down for good. Requescat im pace.

So I reasoned myself into building a new game machine with state-of-the-art components. First, in this day and age, kids need a computer. Curiously, building a cheap computer for them seemed to make no sense to me. What did make sense to me was to give them my 3.8GHz speed demon, which is adequate for any game on the planet, and build a new machine with state-of-the-art components for gaming. (Do you have any idea how many hours a day an adult male not unlike myself can spend fighting exotic monsters in games like World of Warcraft? Yet, at the same time, be thoroughly appalled at how much time the children waste on Facebook, MSM, and Youtube?)

When a man wants to do something incredibly stupid, a man can invent all sorts of plausible-sounding reasons to convince himself that it's the right and necessary thing to do. Fortunately, my wife's idea of digital has something to do with painting her nails, so there was no voice of reason to get in my way.

Therefore, I could happily spend all kinds of money I didn't have on something I didn't need — a machine that today runs at an absolutely blinding 4.0GHz. Without all kinds of extremely expensive high-tech components (think liquid nitrogen or phase-change cooling), that's about as fast as a desktop computer can get. I refuse to calculate the final bill. I stopped counting at $837 although the final bill is probably a few hundred more.

Finally, I moved the guts of my old machine into my kid's enclosure, pushed the start button, and SPLAT! No change. USB overload.

OK, I thought, this is bloody impossible. I stared at the machine stupidly for many minutes.

Then, with a drawn-out, audible "ah...", came the dawn. What my darling daughter omitted from her story was that she or her sister had broken the front-panel USB connector, shorting out the pins. After a few minutes with a magnifying glass and a miniature screw driver, the machine came right up.

Had I been told the whole story, the fix would have cost $8 plus shipping. Instead, I wound up selling mutual funds when the market was diving. (Do give me moral credit for not saying I had to sell them.)

One of my Characters, Prune, from the The Rift
The Anatomy of a Hand-Built Game Machine