Wednesday, December 22, 2010

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.

Saturday, December 11, 2010

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.

Wednesday, December 8, 2010

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.

Friday, November 26, 2010

Why Are There No Fat Zombies?

Zombies have serious nourishment problems. All the human flesh they gulp seems to do them no good. Maybe, when first bitten, there's meat on their bones. However, in a few hours, days or weeks, they tend to look like the guy on the right. Ever see a zombie, especially one who has just eaten someone, take a satisfied nap? I think not.

They have terrible digestive problems as well. Ever see a zombie sitting on the toilet reading a newspaper? Once again, I think not! Eventually they must fill up completely, leaving no more room for living flesh. What do they do then? I can't help but feel sorry for them.

By now you must be wondering, why is Lonnie writing about the plight of zombies?

Well, I took a steam bath today. But beforehand, for the first time since the allo, I looked rather thoroughly at myself in the mirror. When I went into the hospital I weighed 45 more pounds than when I came out. That, my friends, is serious weight loss. In fact, if you really want to lose those extra pounds but hate to diet and exercise, have an allogeneic transplant! I guarantee, if you survive, it will work.

My bones, especially those in my back, stick out like those of my zombie friend. I can't even sit in the most comfortable office chair ever, my Herman Miller Aeron, without developing serious pain. A recent MRI, where I had to lie on that hard, cold, flat plank, was, well, exquisitely painful. Also, I have no shoulders. And size 34 jeans fall off by themselves.

My ability to eat has improved considerably. When I first left the hospital most foods were repulsive. Even Jello tasted vile. I subsisted mainly on TPN, which is a colossal pain. Today, food once more tastes like food and I can eat a reasonable amount of it on most days. Like my poor zombie, though, it doesn't seem to be doing me a lot of good.

I'm not the most patient person on the planet, but I can be impatient longer than just about anyone else. Sadly, that's really not the same thing. I am getting stronger as I struggle to climb stairs, leave the wheelchair at home, and do as much for myself as I possibly can, but my backbone still sticks out like a dorsal fin.

I'd post a naked picture of me but someone would complain and I'd get shut down, which is a shame because my picture would help people understand rib anatomy. Want to see a femur?

Ok, I'm done whining. I know that, in a few weeks, if I don't overdo it, I'll have enough flesh to sit in a chair or lie on my back. By then I'll be complaining about something else.


Tuesday, November 16, 2010

An Ordinary Day

I woke up, drank coffee while reading the paper, ate a bowl of cereal. Swallowed my morning handful of pills.

Got myself dressed. It is still difficult to reach my toes, so donning socks is problematic, but after some contortions, I managed. Wearing my clothes, I look pretty good at 152 lbs, but without my clothes I look alarmingly thin. I lost 45lbs in hospital.

Walked unaided down the stairs to get in the car. Ivonne drove me to the hospital (I'm not quite ready to drive myself: I need more muscle for the pedals). For the first time, I walked to the doctor's office instead of using the wheelchair and sat in the waiting room just like everybody else.


On the way home Ivonne and I stopped at our favorite noodle shop for bowls of ramen. The soup was especially good today. We sat at the table for quite some time talking about how far we've come since the day we met, and how happy we were now. It seemed like a date. There was a lot of laughter, which was painful for Ivonne because she had a wisdom tooth extracted last week (they had to saw into the bone to get the stubborn thing out). She no longer looks quite like a chipmunk.

At home again, I found my neighbor fixing my lawnmower. John has taken care of my grass since last spring when I could no longer do it myself. He wheels out the trash on trash day and sweeps (and scrapes) the sidewalks. I did not ask him to do any of these things. He will take nothing in return. He and his wife are angels. He is a survivor of another kind of cancer. We had a good talk about that last year.

I was sure I wouldn't be able to climb the stairs after all the walking I did today, but up I went. I'm getting stronger.

I checked my email for everything I haven't been able to read since August. So many of my friends, new and old, were worried about me! I'm sorry I wasn't able to respond back then. There are so many emails I can't respond even now except to say I think of you as my extended family and am ever so thankful for you.

Tomorrow I have to do my taxes (from 2009, may Uncle Sam forgive me) and find out what we need to do to put the children in school. Every day I take a whack at the paperwork that I've ignored since, well, since January, really. It was an impressive pile but I'm nearing the bottom. I think about doing consulting work next year — but will anyone hire me in these difficult times?

In other words, it was a perfectly ordinary day, more-or-less like that of everyone else. I dealt with ordinary things in an ordinary way. I am happy. I'm in love. My step-children make me laugh. The cat's fur needs brushing.

My eyes tear up a little. I never thought I would ever see another ordinary day like today. It's another miracle.

Wednesday, November 10, 2010

Photographs you DON'T want to see

 

This is what I looked like a while back and 45lbs heavier, before the mini-allo transplant was even an idea. Recently, Ivonne showed me pictures of myself in the Intensive Care Unit. I was stunned, first at how awful I looked, then by the magnitude of the disaster I had survived.

Many of my dear friends visited me repeatedly in the ICU, even though my delirium prevented me from being aware of them. For a time it was rather obvious that I wasn't going to survive, what with heart problems (tachycardia, atrial fibrillation), kidney failure, pneumonia, liver dysfunction, and a severe gastrointestinal infection. I am profoundly touched that they wanted to be with me, but not one whit sorry to have wasted their time!

I have been reluctant to post Ivonne's pictures because I find them to be deeply disturbing. But perhaps you'll see them differently. I did promise to record everything about the transplant (I failed), so I put the pictures in this post after a big gap. You can decide for yourselves if you want to look at them. (If you click on them, I believe they will enlarge.)

[I remember trying to use my laptop, which was on the over-bed table just a few inches above me. Although I struggled mightily, I did not have the strength to lift my arm high enough to reach the keyboard. That's one reason I couldn't post a daily diary of events.]

One picture is rather fuzzy but I included it because it shows something like eleven drugs being infused into me at the same time.

Meanwhile, here's one I can put here:
Not Dead, Just Hiding





Wednesday, October 27, 2010

Devotion

Last night my wife, Ivonne, told me about events that happened after I returned to the transplant unit from one of my extended stays in the ICU. I remember somewhere between nothing and very little of that time, being either unconscious or lost in hallucination (in mine, I was being interrogated by agents of the government who accused me of having leaked super-classified information to the press).

Ivonne related that, for more than three days, I was constantly trying to tear out the IVs and remove my air mask and other treatment devices, a behavior I witnessed years before when my late mother-in-law was given a shot of atropine after a heart attack. Back then, my ex-wife and I stood at her unconscious mother's bedside for five or six hours preventing her from disconnecting everything that was keeping her alive; however, she was relentless. When we were both thoroughly exhausted, with great reluctance we left her to the nurses, who in all probability restrained her, something we couldn't bear to witness.

Back in my room, when I was behaving just like my late mother-in-law, Ivonne stood by the bed protecting me from myself. She told me it was quite difficult because I was very strong and very determined: it was a fight the whole time. She kept at it until a nurse asked her, when is the last time you had some sleep?

"I don't know, maybe a couple of days, I don't remember," she replied as she continued to struggle with me.

The bed next to him isn't being used, why not get some sleep?

"I can't—he keeps trying to pull out his IVs!"

Don't worry, the nurse replied, we'll get a sitter. Shortly afterward the sitter arrived, pulled up a chair, and was ready to take over. Still Ivonne would not stop, could not stop. Finally, the sitter told her,

"Look. I'm here, I'm going to stay here, he's going to be OK, I'll wake you up if there's any change, get some sleep!"

With that, Ivonne finally let go, fell into the bed next to mine like a big tree, falling asleep the instant her head hit the pillow. She slept for nine hours.

To my old friends: when I married a Mexicana thirty-one years younger than myself, and with whom I had almost nothing in common (language, culture, nationality, economic status, formal education, etc.), you were afraid that I might have completely lost my mind—what do you think now? As she told me this story, as the complete devotion it revealed sank in, tears silently dripped down my cheeks. A day later, as I write this, they're here again.

I feel like the luckiest man on earth.

Monday, October 11, 2010

Home at Last

Friday I came home after enduring, give or take, 113 days in hospital including eighteen in the Intensive Care Unit. I survived by a margin no thicker than a sheet of paper. Yet, I'm still here, and we may very well have killed the cancer (I say "we" even though most of the time I was unconscious or delirious). When all cancer measurements hit zero there will be a grand celebration!

It's almost impossible to use the word "cured" with multiple myeloma and get away with it, so instead I'll be happily talking nonsense about "molecular remission" and winking broadly. (Incidentally, my blood type used to be A-, but because my donor was O+, now so am I.)

There are many things to tell you, but I have the worst head cold I've had in years, which I think is entirely ridiculous and unfair, but, as Tony Soprano used to say, whaddya gonna do? Also it is time to rethink this blog — its purpose was to record the experience of the allo (which I utterly failed to do). Whatever will I do with it now?

I can't eat much, so I'm being fed by TPN. Even Jello tastes like sawdust and dead animals. Mainly, this is because the only functioning part of my sense of smell is the part that senses danger. Apparently, even Jello is dangerous.

A Girl from S. America
Last night my daughter Sharon was practicing the opening waltz of her QuinceaƱara with her mother, the choreographer. If you don't know what the QuinceaƱara is in the Latin world, let me tell you: it's a very big deal, the fifteenth birthday of a daughter. I know just how big because I'm paying for the dinner.

Although their dance looked great, they did it as a two-step instead of the three steps of the waltz, which drove me nuts, trained, as I was, for the cotillion. I tried to explain the basic box waltz but who can learn to dance from words in the wrong language? So I entered an altered state, one in which I did not remember that I couldn't walk. I couldn't help myself — I was going to teach them to waltz!

Now you must remember that I have not walked without a walker and relentless supervision for many months. I am also saddled with a huge, heavy backpack for the TPN. Nevertheless,  I put the pack on my wife (it was too heavy for me) and we walked (she walked — I shuffled) to the center of the room, where, in this miraculous altered state, I taught her the basic steps. Then we waltzed together to Strauss. It must have been adrenaline boosting me because today I can barely slide into my wheelchair. It was also the first time my bride and I had ever danced together (we even had to celebrate our first anniversary in the hospital last month). I was teary with joy for the rest of the night. Still am.

I must end for now on a note of sadness: my older brother died last month of lung cancer. I had not anticipated that I would take his death so hard. Now, I am the last of my family and it hurts.

Frank Joseph Nesseler, II

More later, when I'm stronger.

Sunday, September 5, 2010

Ivonne Fills In the Gaps

Ivonne, who was with me every day in ICU, kept a detailed diary of everything she saw and most of what she heard. She wrote many pages of quotation and observation, along with taking a few photographs.

Isn't it wonderful when you love your wife?

It doesn't seem possible that I could have missed so much, including the unhappy fact that, all-in-all, I spent eighteen days on three separate occasions in ICU, not eight as I had written below. I came close to death more than a few times. The doctors were hamstrung: if they treated one problem, another might intensify and kill me. I was held in precarious balance while lost in a paranoid fantasy of spies and lies.

To take my mind off that, I'll tell you a story. Twelve years ago last July I was diagnosed with multiple myeloma, an incurable, universally-fatal cancer. The average survivability was five years with an immediate autologous bone-marrow transplant, less without. Sometimes the cancer works much more quickly, sometimes it takes longer, but incurable is incurable. This a fact difficult to absorb and move beyond.

My general practitioner at the time, who is by profession a fine nephrologist, was Doctor Robert R. (back then there were few GPs, so I had to find a specialist willing to double as one).  He told me I would have to find a new doctor, a hematologist or oncologist, to treat the myeloma because myeloma was too far from his specialty to treat me himself. A few minutes later, after a fateful decision or two (I'm not sure my writing is adequate, yet, to describe my oncologist), I told him that he wasn't off the hook: "Although the disease is a blood cancer, what kills us most of the time is not the cancer but kidney failure — you're my kidney man — you'll be there in the end!

He moved his practice to the northern, pretentious wilds of the county (Encinitas), alas, so I had to find another nearby specialist willing to be subverted to the general good cause. I've seen Dr. Robert now and then but mostly because I like him: I never had a kidney problem or other serious disease (other than the cancer, that is).

Last night Ivonne told me he was my nephrologist in the ICU! I had no idea. I gather there was quite an heated debate over the issue of dialysis. Insofar as I can tell, he resisted considerable pressure to put me on dialysis. I remember a stentorian voice breaking through my on-going delusions: NO DIALYSIS it shouted!  He was right. Last most recent test of my creatinine was .9 with no dialysis.

What was he doing in the La Jolla ICU watching over me when his practice is in Encinitas, miles to the north? Perhaps he was taking a shift there for some other reason when they carried me in. Ill find out before too long, but I prefer to think that he heard I was in the ICU fighting kidney failure, along with pneumonia and other disasters, and, remembering our conversation of twelve years before, came to help.

This Picture is Not Obscene!

Sunday, August 29, 2010

I Made It!

The Worst: Losing it in ICU (maybe less than three weeks ago)

Later, when I know more, I'll tell you what I learn about the eighteen days I spent unconscious in the ICU. (I wasn't unconscious in a way. During the two attempts on my life I experienced a scary paranoid hallucination that lasted the whole time: the fantasy was so compelling I needed anti-psychotics to put it down.)

Phelias Fogg, of Doyle's Around the World in Eighty Days, saw much more in the time of his around-the-world journey than have I in my last eighty days, stuck in general hospital (Scripps Green) or, as of mid-week, a rehabilitation hospital (Vibra). He didn't appreciate much of the scenery nor have I. We both just wanted to get it done, like having a tooth crowned: then off to Fiji for a proper recovery! But let me tell you right off — the Vibra rehab hospital ain't Fiji.

Today marks the eightieth day (or, the first 6,825,600 seconds) of complete hospitalization for my allogeneic transplant (from a matched but unrelated donor).  I am happy to report the following:
  • I couldn't fill you in earlier because I didn't have the strength: mostly, I slept, but today I've been awake for the whole afternoon for the first time.
  • I came near death twice during my two stays in ICU, which is nothing, right? Ivonne had to take all our stuff home more than once. I don't want to imagine what was on her mind.
  • The donated cells have engrafted! I have a working, new immune system!
  • An epic battle is being fought with the old myeloma. The new immune system seems to be destroying the cancer! When I entered eighty days ago, my light chains (in mg/dL) were in the thousands: pretty much we had stopped looking at the test result since there was nothing we could do about it. Yet last week's measurement showed but 42.00 (remember, though, 1.76 is normal — we have a ways to go). I think the blood tests are showing bone reparation as well (low calcium, high alkaline phosphatase)!
  • I don't seem to need anti-rejection drugs. The close-to-perfect match has given me no hint of rejection.
  • I'm too weak to change my diapers. I walk with a walker and helpers, and not far. My peripheral neuropathy has become more of the very painful variety than than the numbing one (don't you just love morphine!). Typing requires more strength than I usually have: this is the first email/post I've written in a very long time. I'm always asleep or unconscious or in agony. Or having surgery with too little numbing.
  • Ivonne spent every night with me, nearly, since I entered Scripps Green on 11 June. I could not have done this without her.
  • Some day there may be a case study: apparently med students and fellows are working on it! (Not confirmed yet.)
There's a lot more, of course, but I'm tired. I do know it was time to let all of you who have supported me, comforted me, prayed for me, hoped for me, visited me, written to me, that I am so grateful for you for making this easier for me. This includes Marsha and John, who have tended to my lawn; Allyson, who is taking care of the difficult or ill pets; Kent P, who visits me at least every week (and has helped me in many other sensitive ways); and Lee and June, who are always there for me when I need them to be.

I would have been dead years ago but for the excellent and, at times, heroic work of my doctors. I would name them if they would allow it. How can I ever thank them enough?

I'll write more as I get better, but I can answer questions if you put them in the comments. The eighty days were excruciatingly busy, I'm sure many of you are wondering about some part or another.


    Saturday, June 26, 2010

    The last time I was a Hero to my son, Lonnie, Jr., and my daughter Bess

    Shakeys Pizza made pretty good pizza, the pitchers of beer were better, and best of all was the entertainment on weekends. I liked it especially when they had old-time itinerant banjo players, you know, the guys with the specially-made black wood footrests for the left foot. If you should be lucky enough these days to find one, be sure to ask him (or her) to play "My Dear, the World is Waiting for the Sunshine," the banjo standard by which they compete with each other. They might snarl at you a bit, but if they play it, you'll remember it. (I had one that lied to me, said he didn't know it: ten minutes later he gave me a rousing, wonderful performance.)

    Lonnie and Bess came along on Friday nights sometimes, when they were little, and this evening's entertainment included a German beer-drinking contest from volunteers from the audience. I think there were at least five of us who volunteered.

    Anyway, they give you a stein of lager and yell "go." The first one to put the stein upside-down on his head wins. Note that you don't actually have to drink the beer to win a German beer-drinking contest but everybody always does.

    Now if we Nesselers are universally gifted, it is by the ability to gulp beer, so I volunteered. As we lined up, I noticed that the guy to my right was a huge trucker: my competition, I thought. We were each given a huge frothy stein of lager.


    GO! And I was done, stein upside down on my head, while others were no more than half finished. Afterward, the trucker turned to me, and I'll never forget his look of astonishment, "How did you DO that?"

    I forget the prize. Free pizza, probably. But the real prize was that my great son and brilliant daughter knew I was a champion (hahahaha), unlike anyone else's dad on earth.

    Sigh.

    That was then, this is now. Neither has tried to see me, not in more than twenty years, not even now, with my chances being what they are.

    **************

    Thus far so good. I have passed just beyond the reach of tumor lysis syndrome, and no problems with the donor cells thus far. Engraftment has not yet been confirmed: I have zero neutrophils. I am flooded with medications. Four days of packed red blood cells in the last four days, every day potassium (usually six bags), and countless platelet transfusions. Explosive diarrhea: I have as much water and gas in me as the gulf.

    I went in type A negative. By next week I should be O-pos. 

    Ivonne stays with me most days and nights, and most nights I manage to maneuver the xmas tree of infusions through an obstacle course to reach her. She remains my biggest miracle.

    Tuesday, June 22, 2010

    Trial by Miracle

    Last night I dreamed I was a guest at a kind of Orthodox Jewish event, which is odd for a Reform like me. We aren't usually invited anywhere.

    The event was held in a collection of backyards of the of houses of the members of a huge family, also attended by close friends, neighbors, and me.

    I remember a man in a kind of quickstep carrying the older of two brothers, who clearly wasn't right— he seemed to be unaware of being carried and resisting. When they passed, the younger brother said to me, "I wish I were as sick as my brother so that my dad might love me as much."

    I awoke alarmed, knowing deeply in my heart that the boy was wrong.







    I've been the recipient of events so unlikely and so numerous that I have been confused by the thought. Maybe it isn't enough for me to heal myself up, beat the cancer, and then resume my life. I will write the book about fear and cancer, but maybe that isn't enough. The guy who doesn't believe in miracles does believe he's developing weak knees. The question that nailed me this weekend is, is there anything I can do, should do, must do with the rest of my life to merit such gifts? Is it even possible? Since then I've been having strange dreams that haunt me when awake.

    It feels like a knock upside the head. No one is this lucky.

    Friday, June 18, 2010

    A Visit by an Angel

    No, I haven't gone completely loopy. My laptop failed yesterday leaving me in utter despair. I live by the Ethernet!

    Old friends loaned me a laptop until mine could be repaired. I can breathe again!

    There are early signs of graft activity, and I feel a whole lot better than I did earlier this week, although I am thoroughly weak and keep forgetting to eat (that's possible on the cardboard diet they are feeding me).

    Thursday, June 17, 2010

    Day Zero Plus One (a.k.a Thursday)

    Good news today, I think. I appear to have slid past the danger from tumor lysis syndrome and am clearly on second base. Well, maybe only on first wishing to be on second.

    It's difficult enough just getting into the bathroom.

    Not that any base is a pleasant place. At night I've been burning up with fevers, weak and maybe at times delirious, which baffle me by going away in the morning. Neupogen shots have begun. And a dose of methotrexate.

    I seem to be needing less pain medication,  but am getting headaches, which is rare for me. I'm trying to get food into me, too, but it isn't easy. Today I subsisted on yogurt, sealed cookies, Gatorade (I recommend red) and iced coke.  I just had a rather productive meeting with a nutritionist, so maybe we can kick-start my appetite with smoothies and sealed cookies. Appetite was good prior to donor infusion. But I fear that until the nightly fevers stop, eating is going to be a challenge.

    All I can do now is report what happens. The challenges of this type of transplant have nothing or little to do with multiple myeloma, about which I claim some modest knowledge. In truth, doctors, nurses, and, to a lesser extent, me, we are exploring Terra Incognito. I do know we are awaiting signs of engraftment. We need to see neutrophils produced in my marrow.

    Today's post wasn't easy, but I did set out to produce a daily record of the experience for those who may wish to follow.

    Wednesday, June 16, 2010

    Day Zero

    The donor cells arrived in the night. Did you know the donor gets nothing for his troubles but the satisfaction of possibly saving a life?

    I can't think of a greater gift to give another than the completely unrewarded, and possibly unwarranted, altruistic gift of life, can you?

    In a year we will be given the opportunity to get to know one another, or a least the opportunity to agree to communication.

    Donors get nothing in direct reward for their magnificent gift. It's a gift of pure love.

    Although if the graft kills me, I might think less of it, and different people will win the pool money.

    I'm not sure of the time today when the donor cells will be infused. If you've spent enough time in hospital, you realize they don't know either. But it will be today. I'll leave a postscript.

    There are 8.5 million donors in the America's standard data bank, all of whom have volunteered samples to be properly typed just for an event such as this. They are the unchallenged heroes of my universe. Those, and the doctors and nurses who decided my life was worth saving, an outcome I never imagine I deserve one bit.

    PS: Donation cells given, no adverse reactions yet, I'm exhausted.

    Tuesday, June 15, 2010

    Day Zero Minus One

    About an hour ago I finished my last chemotherapy, thymoglobin (known around here as "the rabbit"). In about an hour a medium dose of Melphalan will kill off some of my marrow and stun the rest, so as to prepare it for the infusion of donor cells tomorrow. No more dex.

    I will get a data point on the effectiveness of TMG (rabbit) and cladribine as a combined agents against kappa light-chain disease. There is some talk that they work, but at the moment it is difficult to imagine there being use outside of an in-patient basis.

    Last night I had an unexpectedly painful reaction to the drugs. Broke right through morphine. Required every drug we had on the list to give me relief.

    In an hour or so, the Melphalan will be administered. My choice will have been made, permanently. I have a pool going, if you'd care to contribute. Because I have Brit nurse, some quantity of Porter is involved. I think this picture of Moby Dick is not exactly the one I wanted. I wanted the one where the crew commits to hunting Moby Dick. Click on the picture of awesome detail.



    Now I must suck on ice chips constantly. Because the hospital doesn't allow direct access to photos, like you'll find on Google Images no pictures. Which is too bad, because I want my epitaph to read, "We didn't think he needed it." Maybe later, when Verizon's 3G network may be usable, I'll add the picture I want.

    $5, live or die, if you want in to the pool.

    PS — The Melphalan was administered at 2:15.  The Moby Dick moment of commitment has passed. There is no going back. The dose was about half of the dose of an autologous transplant, who knows how much marrow that kills, and how much is left as "food" for the donor cells? Not I.

    PPS — My epitaph: "They thought I wouldn't need it."

    Saturday, June 12, 2010

    It wasn't thymoglobulin Friday. It was cladribine.

    You know you're doing serious chemotherapy, even more serious than the Arsenic Trioxide (otherwise known as the "last ditch" chemotheraphy, is when your nurse has to put on a hazmat suit to give it to you. But it is nothing like the Cladribine. It took two transfusions of packed red cells and other lengthy preparations to begin the infusion. I don't think it was much before 11pm before the final button was pushed. Melba, my nurse, and I high-fived. Then she went around putting up warning/chemo signs everywhere. My only problem with it was a headache. And not enough Atavan (oh, what a wonderful drug).

    Today's adventure, which I think is with both a six-hour infusion of thymoglobin and a two hour infusion of Cladribine, plus more transfusions of packed red cells, will probably be more difficult. I think there are three more days of these two before the Melphalan whack on Tuesday.

    A quick note to my Facebook Followers

    Here in the hospital is a wonderful VISITOR wireless network that is becoming slowly useful. However, most social sites (Facebook, Youtube, etc.) are blocked. I get the emails, but, sadly, am unable to respond or post myself without some heroics (that is, using wireless broadband, an expensive and slow proposition.

    Friday, June 11, 2010

    I'm In!

    This morning I checked into Scripps Green Hospital for the big event. Thus far I have a few bags of potassium, and two transfusions of whole blood. Surprisingly to me, they switched to the donor's type, O-, for the second transfusion (I'm A-). I didn't realize the donor had a different blood type and it didn't matter (but they are switching because?). Apparently he's what they call a "universal donor" (not that I know he's a he — I have no information about him except that two he began the premeds necessary for collection. What a remarkably great thing to do for someone else!

    If you wish to send me mail, send to:

    Lonnie J Nesseler
    Rm B353
    Scripps Green Hospital
    10666 N. Torrey Pines Road
    La Jolla CA 92037

    If you have my regular home number, it's rings here. The hospital number is 858-554-2595

    I'm happy, I look great, and have zero doubt or fear. Tuesday is when they whack me with the lower-dose melphalan, and Wednesday is when I get the donor cells. Wish me luck!

    (By the way, the first conditioning chemo for me — thymoglobin — is made from rabbits!)

    Tuesday, June 8, 2010

    Three more days

    On Friday, at 8am, I will be in the Scripps Green Hospital, transplant unit, and the conditioning chemotherapy will begin. I will be there no less than a month, and possibly up to five. I hope 1) not to be killed by tumor lysis syndrome (TLS), and 2) that the experience will be less difficult than the one in September 2005, when I had a full autologous transplant from my own stem cells (which were collected and frozen in 1998). If I make it to a week from Friday, I will probably be OK, at least until we learn the extent to which I will have residual graft vs. host disease (GVHD). It could take months to discover, or be obvious right away (not good).

    The essential difference, by the way, between a reduced-intensity allogeneic transplant from a matched but unrelated donor (MUD, which stands for "matched unrelated donor"), and an autologous transplant, is between chemical destruction of the old bone marrow (with melphalan) and biological destruction of the old bone marrow (by the donor's stem cells). The autologous does not cure, but the MUD can. However, even if the cancer is gone forever, there will be some GVHD that is often permanent. It can be mild, and it can be anything but mild to the point of attacking connective tissue or even the organs and causing death. I  believe that by having a donor with a 9/10 HLA match at the genetic level, the worst isn't going to happen. But...you never know.

    It will also be good if the donor cells, which are being flown by courier here next Tuesday, are successful in attacking my cancer cells and my marrow. It is possible that I could end up with a bad result: both immune systems surviving in what is called a "dual chimera." The two won't be friendly to each other.

    On the other hand, I found a new drug, recently approved for adults, that practically eliminates the risk of TLS, the only complication at all likely to kill me up front. A friend of mine, who had an autologous transplant, had TLS. His kidney functions stopped and there was risk of kidney death. He was on daily dialysis for many weeks, with other medications being pumped in to protect/restart the kidneys, but he was delirious, incoherent, and non-responsive for most of that time. I visited him often. I think he knew I was there but I could not understand him, and, later, he had only vague memories, but, amazingly enough, they pulled him through and the kidneys started to work. He was lucky. Sadly, though, he had waited too long for the autologous transplant and did not get a significant benefit from all of that suffering.

    The new drug is called Elitek (rasburicase). Doctor and I agreed yesterday to add it to the protocol. The only potential problem for me is a severe allergic reaction to it, but, being allergic to nothing, I suspect I'll be ok. So the risk of immediate death drops from 20% to something much lower and I no longer am apprehensive about the next week or two. The Russian Roulette game is now being played with a couple of extra empty cylinders.


    Today I must finish a revision to my will and add a codicil. It isn't what I needed (family trust, etc.) but it will be enough.

    N.B. — My head is full of dex, so I might be incoherent myself today. Sorry.

    Sunday, June 6, 2010

    Unearthing the Music

    I have not played piano in months, in part because the bone pain made it difficult to sit on a piano bench for longer that a few minutes, and in part because the brain damage affected my memory. Pieces I had memorized and played for decades just weren't there.

    But yesterday I had just enough vicodin to be able to sit for a bit longer, so I decided to do what I had been avoiding — discover if my musical memory had returned after a four-month sojourn. I don't mind telling you I was frightened, music being such a huge part of my life, even after the cancer struck. Because I've lost so much muscle, I didn't expect to be able to play well: I just needed to know if the notes were still in my head.

    Of course, I first tried to resurrect Chopin's Waltz in C-sharp minor. Why try to unearth something easy? If Chopin is still there, everything is still there. And, of course, I didn't go looking for the score on my bookshelf — it would have been a catastrophe had I needed it.

    It wasn't easy. It was as if the melodies and fingerings were buried under feet of mud, but little by little, note by note, phrase by phrase, I remembered. Once I had recovered a long phrase, which at times was an irritating and lengthy process, I could accelerate without losing it! Yeah, it wasn't pretty because of the lack of strength and control in my hands and arms, but I heard the mechanical errors and fixed every damn one of them until I could play the piece just well enough that Chopin stopped by to tip his hat in encouragement. I STILL HAVE THE MUSIC!

    I was at it for almost an hour, the longest physical challenge I've attempted this year. Near the end I was sweating profusely, eyes closed, listening to the notes and the phrasing, attempting not only to remember the pieces but to make them beautiful. Well, that last part I'll have to work on later.

    I have never been happier. Like a mad thing, I brought back parts of the E minor waltz, then Paderewski, then Bach's Invention in F major. OMG, it was wonderful! If I could have done it, I would have sat there until I had dug up everything, including the gracefulness.

    I don't think I'll need any more EKGs. Ivonne was helping me up the stairs afterward. Half-way to the top I started to sob and couldn't stop. Whatever else the last four months have taken from me, my heart was undamaged.

    Wednesday, June 2, 2010

    On the Schedule!

    After five months of complications, misery and delay, I just learned that my transplant is ON THE SCHEDULE! I'll be admitted on the 11th of June for four days of cladribine & thymoglobin, then melphalan on the 15th, and, finally, the donor cells on the 16th. All I have to do now is to stay healthy for nine more days!

    Monday, May 31, 2010

    Rhythms

    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.