Monday, May 31, 2010


This is Sunday, 30 May 2010. Today Spanish came back to me. I passed the whole day butchering Spanish with Ivonne. This is worth memorializing because Spanish, on which I had been intensely working, disappeared four months ago leaving me unable to say a word. I fear Ivonne is hurt when I don't try to use her language, but I simply could not.

I freely confess at the outset that I don't know what I'm talking about in this post. I need to tell a subjective but possibly useful story even if I can't prove a word of it. Call it a metaphor. A good metaphor always has some truth in it. Remember that as you think, "this is bullshit."

I wish I had been sufficiently smart to record certain other dates. About two or three weeks ago, my kinetic memories returned. They had disappeared four months ago as well. I realized they had returned when I did a quick little twist and bounce and jumped out of bed. I stood uneasily,  confused. Wow, I thought, how did I do that? For many weeks all I could do to get out of bed was one motion (change of position or, as we nerds say, change of state) at a time, and every morning I had to replan all of moves to get out of bed, usually one at a time while resting in the new position.

More to my joy, if I worked at it, I could play the piano again, a skill, more part of my heart than my head, also lost for these four long, dismal months. I was a small boy when I first learned to play. Much to the annoyance of my teachers, I memorized everything I liked so that, with no great effort, I could remember and play everything I have ever learned. The actual written music drifts out of memory more-or-less permanently. My music lies in the hands and arms and muscles, not in the conscious mind — it's too busy listening, phrasing, and shaping, to remember the notes, hand positions, and so on. Rather much like a tennis player practices to "groove" his serve, lengthy pieces were grooved into my muscle memory. What is the most astonishing is that I hadn't even realized that the muscle memories had been lost until the day they returned. That's how impaired I had become.

One of the chief skills of every pro pianist is to form these muscle memories, then as necessary make them conscious and change them. The last step is to return the sequence to the subconscious as fast as humanly possible. That's the low end of what we do when we "practice." Players who cannot do this must play from the written score, a huge distraction. If I have ever thought about suicide, it was after I realized this skill was gone. I didn't touch my beloved and perfect concert grand for all of that time.

The first event in the sequence was remarkable, too. I had suffered from severe anorexia for weeks. I think I've lost close to thirty pounds because the smell and taste of food had become inedibly repulsive. I could eat no meat and no bread. I subsisted mainly on milk shakes (even the nasty ones in cans), jello, and cold cereal. Coffee was undrinkable. Poor Ivonne, the smell of Mexican food was intolerable, and, sadly, good Mexican food seems to require all-day cooking and can be smelled for miles.

Then, one day, I felt something change in my body. It was as if I were a stretched rubber band that had suddenly snapped. I mean to say, it was a visceral change, something you feel, unlike any I had previously experienced. It lasted, I don't know, maybe a minute, like a small earthquake. I had no idea what it meant until the next day, when I discovered that the repulsive quality of food had disappeared. The anorexia was gone. I still have problems eating, because I think the narcotic doses are too high for my digestive tract to work. It takes a long time to eat because I have to give each bite a long time to travel to where it needs to go. However, I still can't eat normally-large portions, and I'm still losing weight (mostly muscle and fat), for which I have no sure explanation (which is why I'm reducing the narcotic meds).

But these events weren't the biggies. The biggest was the week of the ninth of May, when the strongest of the events occurred. In my mind, in my subjective perception, it was like being tossed around the room in a major earthquake.  This one was important because my labs revealed kidney failure. Unless the kidneys demonstrate normal levels of creatinine, the life-saving transplant is not possible. I was in despair. After a lifetime of normal readings, there was a huge jump in the wrong direction in the labs. Maybe, in sight of salvation, the cancer was going to kill me after all.

For days after the event, I was flummoxed. I was urinating quite a lot, and when I did so, it felt as if I had been stuffed in a washer exercising all of its cycles. This went on for days. I feared I was urinating too much, washing away the electrolytes, which were way out of whack anyway, especially the potassium. (I had had many transfusions of blood, electrolytes, and platelets before the event in repeated attempts to normalize the chemistry.) On the seventeenth of May my doctor said I needed two or more normal labs before I could be a transplant candidate again. Three days after that, my lab test was normal! It has improved every measurement since then. The clock on the transplant has been restarted. The donor is still willing. In a few days I'll tell you the schedule. The doctor also told me, "I think you're coming back. I can see you again! (I hadn't realized the extent to which I had gone AWOL, but my brilliant doc has my skill, the ability to see, not so much what is there, which everyone can do, but what is missing.)

I think most importantly, in mid-afternoon on the eighteenth, big parts of my brain switched back on. I knew this because my brain took me over and was thinking like a mad thing. I had no sleep for days as it insisted on processing four months of unexamined experience. At three in the morning I would plead with it, please, let me sleep! No reply, a kind of FU. I'm still suffering from lack of sleep. Before this, I spent many, many hours of the day and night easily asleep (but the result was not what I would term rested).

In fact, for much of the last four months, I've been away. I'm sure you've noticed how little I've been able to write. My imagination and ability to free associate had also been lost. I'd say I have been in a kind of walking coma, but that turns out to be the title of a wretched pop album. I simply wasn't all here. Some high and low-level brain functioning had gone dormant. Some organs had dropped into a kind of fail-safe operation: they functioned, but poorly. The optimization functions, where they respond to feedback, were degraded or inoperative.

I spent, for example, many hours staring at the floor not thinking, as if severely-depressed in a catatonic way. I knew I had to get off the toilet, but instead I sat there, mind empty, until it occurred to me I wanted to get up and get back to bed. Then the minutes of mindless observation would resume. I would often ask myself if I were asleep with my eyes open. Eventually, sheer will power got me up. But I was never productive. I had largely lost control of my time. Even now I fight this drifting away, mostly without success.

For Ivonne, the worst may be that I wasn't me any more, not the man she loved and married. I'm not completely back even yet, but Ivonne and my doctor can see me again. Every day more returns, not as dramatically as at first, but not difficult to notice, either.

Don't get me wrong. I am one sick myelomiac with horrible problems. Here's an excerpt of today's report to my doctor:

1.             Pain in neck muscles, sternum, backbone. Using cervical collar when walking about. Suspect fat head, muscle loss/weakness, not bone.

2.             Sense of a heavy weight on chest, making breathing seem labored. I try the lung stretching you asked me to do but thus far no big relief.

3.             Digestive tract improved in that food seems appetizing but the process, from one end to the other, seems glacial. It takes a long time to eat because of the wait between bites. Still losing weight. Problem with gas, top to bottom.

4.             Difficult to wake up completely. I drift. I'm not in control of time. Trying 20mg pred in AM for kick start. No dex.

5.             Trying to get off Oxycontin 20 so back to vicodin 5mg/4hrs or 10mg 4 hrs, skipping late night. Perhaps Oxy makes me a zombie or is the reason the digestive tract doesn’t want to work.

6.             Not getting stronger. Still quite difficult to climb stairs. Some days, like today, very difficult.

7.             Hopefully the big viruses (e.g., CMV) are still dormant.
But almost every day, I notice my brain switching on more long-dormant functions. Oh, and my dangerously dry sense of humor has crept back. It hasn't gotten me into trouble yet, but give it a week.

Why did this happen?

In January, I went into hospital to begin the reduced-intensity allogeneic transplant from a matched but unrelated donor (a "MUD" transplant). The dates were set for the conditioning phase, the airplane to transport the donor's cells was scheduled. The problem was that various viruses, including CMV, had become active. The viruses needed to be dormant for the transplant.

Fortunately, Scripps Clinic has, in my opinion, a world-class infectious disease specialist. Had there been no other, he could have been Conan Doyle's model for Sherlock Holmes: persistent, expert, determined, monomaniacal, following his magnifying glass across floors and up walls until he finds the evidence. The man is worthy of the utmost respect. I truly try to fight my ingrained friendly but disrespectful manner to give it to him.

However, unbeknownst to me, there had been a juvenile pissing contest on the way to administer Cytogam, an extremely effective (but dangerous) drug against these viruses. Something about size, perhaps? In any case, to my utter disbelief, what Sherlock thought should be done, wasn't.

As a result, I went into atrial fibrillation during the infusion. Worse, two days later I was suffering hallucinations, something no one wanted to treat or even acknowledge. I went home in early February after seventeen days, but in some sense, I wasn't really there. My friends noticed even if I didn't. I would spend hours doing nothing, not even thinking. I became weaker and weaker. My lab tests started to look strange. The cancer was skyrocketing. And all of the functioning I've described had simply shut down or had been severely degraded. I don't think this level of damage was acknowledged and documented, but now that I've "come to" at least I can tell you about it, and how, as it heals itself, I find myself once more on the transplant schedule. I have hope once more.

Although I must say that I can't expect to long continue this normal-like functioning, with its normal-like labs, while the uncontrolled cancer gushes through me like the oil in the broken pipes off Louisiana. There is so much cancer that my blood is significantly frothy and my immune system is barely measurable. At one point the freelite chain assay, a kind of estimate of how much cancer is in the blood, was above 1,000, an astonishingly high number. This respite has given me a transplant window, but, baby, I need to jump through it as soon as humanly possible. Every day I wonder how long the kidneys can continue normal operation.

And that's where I had an advantage. Unlike many of my age, I have largely been spared the diseases of my age as well as those of years of self abuse or bad luck. I had no diabetes, high blood pressure, heart arrhythmias, congestive heart failure, nothing worthy of a proper name. For sixty-five years the system has simply run normally, responding now and then to the minor kind of abuse to which I would occasionally subject it (tequila!). Powerful, persistent rhythms made it all work, rhythms which today I can almost hear as they sing me back to life.

I don't believe in much, as you know, but I do believe that there is a sense in which the body "wants" to resume normal operations. My guess is that the brain going off line was the main problem because it was no longer managing the bio-chemical feedback loops or issuing other top-level directives to the organs. There was no medicine that could help me (or, maybe, Scripps Clinic, having no psychiatrists at all, let alone someone trained in iatrogenic biochemical brain problems like this, was simply at a loss). The brain had to find its own way back, if it were possible. Until then, nothing was going to function optimally or normally. The kidney, until recently, as you know, managed to process huge volumes of cancer without a hiccup — did it find its operational groove? Or did the brain open one eye and push the restart system button? There's no way to know, but after days of being bounced around, the kidneys returned to normal. Since then, every reading has been an improvement. The labs, or, rather, the relationships between the measurements, seem to be making sense again. Another miracle, or am I the luckiest man with cancer you've ever known?

The desire or imperative to return to normal, if you can think about the rhythms of life in this way, is a universal in which I believe. You may suggest that this is just another brain function, but I design and build computer functions and cannot imagine how the brain implements this one. I think it is embedded deep in the stem, but, as I said early on, I have proof of nothing. The damage must have been very great, and, by inference, the process difficult, for the brain to have labored for four months before reemerging. Whatever else may be true, if the brain can repair itself from such an insult, it's a valid argument for living more carefully so that if it needs to repair itself, it can.

It is good to be back.

Sunday, May 9, 2010

Balanced, but Not at Ease

I find little comfort in the fact that the rock has been balanced on its point for ages. Firstly, it can't move or be moved without a shattering fall resolving into uncountably-many microscopic, glass-like fragments. Despite the obvious capture of kinetic energy along with the illusion of a freeze in time, a slow, inexorable deterioration of the balance of forces is occuring. Eventually, balance will be lost and the rock will fall.

My reduced intensity allogeneic bone-marrow transplant from a matched but unrelated donor is at the same time in a similar, frustrating, and dangerous state of balance. The amount of cancer in the blood (light chains of plasma cells broken off from too many malignant plasma cells) is astronomical, so high that it has to be treated (reduced). But treating the cancer at this point requires high-dose dexamethasone, the only known drug to still be effective in reducing the cancer ("tumor burden"). The risk is that dex lowers the ability of the body to resist the various viruses that need to be dormant for the transplant to succeed (e.g., not kill me). Too much cancer floating around impedes kidney functionality, which raises the specter of tumor lysis syndrome. Treating the cancer threatens reactivation of the viruses that kept me in hospital for seventeen days this year already.

Probably we will restart arsenic trioxide shortly. It may work on the cancer, it may not, but there is little evidence in the literature of a likelihood of its awakening the viruses.

How frightening being in balance can be! We have to shave a bit off of one side of a system that has found it's own natural equilibrium. Meanwhile, every day that passes without proceeding to transplant is one day closer to the possibility that the option will be foreclosed.

Otherwise I seem to be doing better every day. I'm a little stronger despite the dex and my kidney functions are improving slowly. If treating the cancer improves these functions, which have never before been troublesome, perhaps we can proceed.

Meanwhile, I haven't been able to talk to you because Google, which owns and operates Blogger, decided to shut down the kind of blogging ("FTP blogging") I had been doing for more than a year. In my confused state, or their confused state, I blew the conversion. I don't know if any of my subscribers will receive notice of this post. Please leave a comment below if you received some kind of notification, or discover a problem with past posts that I should try to fix.

Friday, May 7, 2010

Let the Trial Begin!

When I first started this blog, the idea was to chronicle my second autologous stem-cell transplant (SCT) for the benefit of those who might find themselves following in my footsteps. Many have decided to keep a diary of the experience but few have actually done it, mostly because they find themselves in too much pain or discomfort. Maybe I won't be able to do it either, but that was the idea. As so many of you have noticed, my rate of posting has come down considerably over the last few weeks.

Then, when the SCT was ruled out fourteen months ago, I decided I would take you with me all the way to the end, wherever that turned out to be.

Now here we are, in April. I never imagined living this long, let alone finding myself facing a risky, reduced-intensity allogeneic transplant. Friday I move into the hospital (23rd April, 2010, 9am). If I'm lucky I'll be home again in a month. Getting to go home does not mark the end of the procedure, but does signal a good end of the beginning. If I'm not, if I'm unlucky, I could spend from now until September in the transplant unit of Scripps Green Hospital. There's a good chance the procedure will kill me, a chance that I learned today is higher than I had previously thought.

Some time soon I will be trying to convert my blog to the mandated Blogger format. I'll send you a message from the other side when it's done.

("The other side" sounds spooky, now that I've written it. I don't mean THAT other side!)