Potpourri #2: This, That, and a Wish

Bell's Palsy

As if I had nothing else with which to struggle, now I have Bell's Palsy. I look like the poor man on the right except that the left side of my face is paralyzed, not the right. Actually, I look worse than he does. My tear ducts are involved and I can't close my left eye. The resulting pain and dryness require me to use eye drops frequently, as well as a special gel at night. My attempts at smiling would terrify children.

Last Tuesday, with a gusher of tears, more from the left eye than the right, it all began. Also, at the same time, my vision changed dramatically for the worse: my left eye, usually nearly 20-20, could barely see. By Thursday I had seen two ophthalmologists, both of whom insisted that I immediately get an MRI and see a neurologist. Which I did. My brain is normal: there is no obvious cause of the paralysis (and, blessedly, no sign of cancer). When they can't find a cause, they call it Bell's Palsy. Perhaps the problem is viral.

The onset of paralysis was quite rapid. On the way to the ophthalmologist I could drink water from a sports-top bottle. By the time the examination ended I could not: the water fell out of the paralyzed side onto my shirt.

The most trying aspect is that it remains horribly difficult to read.

In any case, there's nothing to be done except perhaps for acupuncture. I hope the condition will resolve itself, as it often does, but it can be permanent.

 

Learning to Walk

To begin the transplant, I walked sturdily into Scripps Green Hospital weighing about 195 lbs. Almost four months later I had to be carried out on a gurney, having lost some 45 lbs of fat and muscle. I was literally flaco, or "skin and bone," in Spanish.

For the longest time, I could not handle stairs. So, four or five times, when I needed to see the doctor, a medical transportation outfit carried me down the stairs, drove me to the office, drove me back, then carried me up the stairs to my bedroom. I was always frightened, with good reason, of being dropped on the staircase.

One day, while riding in the back of the ambulance, I overheard the sidekick, who looked like he desperately needed a cigarette, talking to the driver:

I was really surprised. I was already in jail for something else, so the judge let me off with time served!  

His speech was strikingly matter-of-fact in this somewhat alarming revelation. Afterward I worked hard to use the stairs: that was the last time I let them or anyone else carry me.

The piano once again beckons me, but being "out of practice" hardly describes my playing. I have lost so much muscle that I am no match for the concert grand, and, worst of all, every hint of gracefulness is gone. Also, my memory has taken a huge hit. I had memorized everything I liked to play, seldom forgetting much. Now I struggle to remember any of the pieces that, formerly, I could play in the dark (and, like Mozart, who was a ridiculous show-off, even upside-down). I do have an old recording of me playing Gershwin's Prelude in C# minor, which was the starting point of my venturing into jazz. A couple of years later I had made the Prelude my own, with all manner of improvisations, but I have no recording of where I left off. Today I can't play it at all. I can't manage the huge stretches. I wish I could put up a better recording for you, but that will take some time.

The Moravian Star

Nearly every day, two of my children, Sharon and Jared, who now live with Ivonne and me, ask, "Where is the star for the tree?" And every day I check Amazon.com for tracking information. At long last I think it is in San Diego and might be here tomorrow.

This is the first time I've celebrated Christmas since converting to Judaism many decades ago. This is largely because, on Christmas Eve, my wife will be in Tijuana with her other two children, Nahomy and Ruben, along with one or two hundred of her closest cousins. There will be feasting, churching, drinking, shooting guns at midnight, and sharing food gifts with the neighbors and others. At dawn they can finally sleep. I know this is an wholly inadequate description of the Tijuana version of Las Posadas, but perhaps next year I'll be strong enough to experience it for myself.

However, that leaves Sharon, Jared and me by ourselves, and the last thing I'm emotionally prepared to cope with is the moping of a couple of lonely daughters. So we are celebrating Christmas this year, probably a day early so that Ivonne can be with us. I have a gift for the girls which I hope will make them completely forget that they aren't in TJ.

I don't mind celebrating Christmas this year. I even asked a friend to climb into the attic to retrieve decorations that have been in my family for more than sixty years. Along with the solstice, which I believe in as steadfastly as any Druid, Christmas signifies for me the possibility of a new or better life. Like the principal theme in American literature, Christmas tells us that it is always possible to start over without the well-earned tribulations of the past. May all of us, and especially we cancer patients, embrace the spirit of Christmas during these, the longest and darkest nights of the year.

Angels and Demons

Click on Me

I had hoped to announce by now that I had achieved complete remission. No such luck. The chart above shows the results of all of the Freelite© tests I've taken since August. (The Freelite test gives a rough idea of the tumor burden, which, for myeloma, would be the number of malignant plasma cells in the marrow.) Clearly the chart demonstrates that my cancer (the grayish-blue line) has been stuck for months in the range of forty to fifty. If we throw out the low point, the curve is almost flat. High normal is 1.76 mg/dL, a value much lower than anything in the chart. If you click on it, the chart will become much easier to read.

Numbers this high normally tear people apart, but, as you will recall, before the transplant I saw kappa numbers in the thousands with no apparent damage. The current numbers are two orders of magnitude lower than before. What you are seeing is a war between the new immune system and the old cancer, according to one of my better doctors. If the new immune system weren't fighting the cancer, there would be an exponential rise in kappa (the line would be trending toward the vertical). Exponential rises kill.

The Battle for Asgard

There is the possibility I can live quite normally despite the high numbers. Except for this week's withdrawal from morphine, I'm already living quite normally. It takes a long time for the new immune system to become as strong as a native system, so the appropriate response now is watchful waiting. I suspect this means, in addition to Freelite testing, I will need regular CT-Pet scans. The last thing I need is to discover by a broken bone, surgery, and radiation that a response is in order.

On the other hand, if the Freelite number starts to rise rapidly, or damage is discovered, it may be time for a donor lymphocyte infusion (probably along with Thalidomide or one of its newer derivatives). In essence, I would get an injection of white blood cells from my donor, cells that are likely to recognize and attack the cancer. The downside is the high probability of serious graft-versus-host disease (which the Thalidomide is intended to mitigate).

In mid-October, the last time I dared to write about what the cancer was doing, I had just seen the dip in kappa to 21.10 along with much-improved blood work. My doctors and I were extrapolating that we would be seeing "normal" by Thanksgiving. When the number unexpectedly rose in early November, at first I was as stunned as if a lover had slapped me in the face. My bewilderment soon segued into deep depression as I struggled to get my mind around the meaning of this unhappy development. Was the mini-allo a failure? Had my fabulous good luck failed me? Was I once more in the End Game?

After many days of dark processing, I decided that, no, I'm not back in the End Game. There are things that can be done if the cancer spins out of control. I'm not being damaged. The numbers aren't soaring in the wrong direction. The only cancer-related problem I have is GVHD of the esophagus and the eyes — annoying but tolerable. My quality of life is good. I still enjoy perfectly ordinary days. However, the feeling I once had, the feeling that before too long I could completely forget I ever had cancer, is gone. I haven't beaten the Beast, but I am holding my own in a fight that, at the moment, is not difficult.

If I hadn't had the transplant, I would surely have died by now. The numbers were horrible and trending upward so quickly that even my cast-iron system would have failed. My life was severely impaired. When the transplant window opened, I jumped through it without a moment's hesitation. And I'm glad I did, even though I would much rather be looking at remission right now rather than mere stability.

There's one other plus. Regardless of what happens next, I attacked my enemy with everything I had. I went "all in," as poker people like to say, and I'm still here. Not only is there considerable joy in that, but I've traveled all the way to the apocalyptic end and have returned, bloody but unbowed. The bully has been faced down. There is nothing left to fear.

In the hospital, in my delirium, Ivonne witnessed an event I don't remember at all, an event I've held back until now. Apparently, a group of phantasms had come to my bedside to present me with a proposition. As I sat up to talk with them, they told me of a wondrous place, an Edenic, joyful land where I would be quite happy. They wanted to take me there. For a few moments, I tried to get up to follow them. Then, falling back into bed, I said, with a sigh, "No, I cannot come with you. This is not my time." Then I closed my eyes and slept.

Happy holidays.

What To Do Until the Vicodin Kicks In

I am at once too cold and too hot. My vampire-red eyes burn in the vicious sunlight. Either my hands are balled up into fists, or one hand is tightly squeezing the thumb of the other. It is comforting to rock back and forth, hugging myself.

Every part of my body hurts. My fingertips don't like the keyboard. The soles of my feet are on fire, as if, on the way to the bathroom this morning, I had taken a stroll on lava. Over and over I think, I will not throw up! I will not throw up! As I hug myself, I notice that even my ass hurts.

Torquemada, the Grand Inquisitor of Spain, would have admired me for what I've done to myself.

The cause of all this wretchedness? Two tiny, beautiful blue pills a day — MS Contin 15's.  The best little pain reliever in the whole wide world! Until you have to give it up, that is.

During the long months of my mini-allo, morphine made me happy. I thought, if the transplant kills me, my dying a junkie would hardly matter. If I survive, I can painlessly wean myself to Vicodin, then reduce the level until I can truly assess the residual pain. No, not with a stupid number from one to ten, as nurses seem to want these days, but with the direct experience of the irreducible pain acquired from myeloma and its routine treatment (mostly bone pain and neuropathy), pain from the transplant, and pain from the vicissitudes of life. Maybe I can endure what remains, maybe I'll still need pain pills. In any case, I might emerge clear-headed and better able to do the many things that have been on the back burner for nearly a year. Like figuring my taxes for 2009.

What I am describing is the agony of the "painless weaning" part of the morphine experience. Although, as I describe it, I can feel the Vicodin kicking in, knocking the edge off. I don't like Vicodin. I don't like Oxycontin either — it's way too harsh. Give me morphine any time! Didn't you hear me? GIVE ME MORPHINE!

(sigh)

Every day for four months I was asked, on a scale of one to ten, how's your pain? So I tried to assign meaning to the numbers. First, the scale should run from zero to nine, zero meaning pain-free (or dead). Here is the whole scale. Feel free to suggest improvements in the comments.

0.  None. I can't feel a thing. Perhaps I'm asleep and dreaming all this.
1.  Ok, if I try, I can manage to be annoyed by the neuropathy in my feet.
3.  Damn, the neuropathy has spread to my fingers!
4.  There's nothing my Germanic will can't ignore.
5.  Ok, I'm only a quarter German. I need a pain pill!
6.  Go away! I can't cope with you right now!
7.  Where's the morphine IV push when I need it?
8.  I'm trying to dial 911 before hitting the floor.
9.  If at all possible, now would be a great time to believe in G-d.