Miracle Two

A year of data

Multi-Drug Resistance. MDR pokes you in the eye from this and older charts. I've tried every drug that's doesn't require being in a clinical trial to get, and failed to obtain at least one that is. In the beginning, when my luck ran high, everything worked quickly and easily. Now, everything works for a short time, then fails. There is very little left I can try. Arsenic. You know you're at the last ditch when your doctor, with a brave, straight face, suggests you try Arsenic. I mean, my ex-wives may have been suggesting it for years, but he means it. (Maybe they, and my unforgiving children, do too.)

My routine numbers look ok (CBC, etc.). There are no known lytic lesions or extramedullary plasmacytomas. I have no secondary diseases worthy of a name. Creatinine low.

On the other hand, just fifteen months ago I spent two full days mucking out my pond with pickaxe, shovel, wheel-barrow and beer. Today, with the neuropathy and bone pain, I carefully plan and minimize trips downstairs. I can't practice the piano for long because of the back pain. The back pain is just strong enough to distract me. I can't ignore it. So I can't play.

And much as I hate it, the skyrocketing Freelite number, as shown in red, just can't be ignored. It's either treat the lab test or die. At the rate of climb, as I said in the previous post:

After more than five months of unrelenting bad news, including the failure of bendamustine after the wedding, the numbers were spiking upward at a rate that meant I needed a miracle were I to make it much longer. Look at the red line, which is a measure of the number of plasma cells (and, therefore, malignant plasma cells) in the body. It doesn't take much imagination to see that if the trend continued upward at such a high velocity, there would be nothing to me but malignant plasma cells before too long. I would have no working immune system. My marrow would fail. And that would be that.

All that was left was to try Arsenic. It isn't likely to bring long-term relief. It may buy a few months at best.

So I found myself doing what one really needs to do when time is obviously short (and, on top of that, having just married and, in the process, acquired four step children). Wills. Titles to houses. Family heirlooms. Finances in general. Pets. Grave sites (El Camino Memorial Park).

But also seeing old friends, mending fractured relationships, "last look" nostalgia indulgence (I'm watching the entire Homicide: Life on the Street series on DVD), working towards a peaceful end. Working my Bucket List, if you will. Striving toward acceptance and peace.

Before we started the Arsenic on November 18th, 2009, I thought an experiment was in order. I had been convinced, from the failure of DVD-R and other regimens with dexamethasone earlier in the year, that I had become resistant to steroids. High dose steroids ruin my quality of my life, so why take Dex if it doesn't help? It took a few days to convince my doctor to let me run a definitive test (or tests). That would be a week of high-dose Dex, which I hadn't taken in many months, a measurement on Monday, and then start Arsenic (first infusion) on Tuesday. If the result of the test showed no effect on the cancer, a result I fully expected to see, I'd skip Dex and take my chances. (Or perhaps keep the dex long enough to see if the combination is what is working, then drop the Dex to see if the success had anything to do with the Dex. And so on.)

Quality of life does matter, even (or especially) when life appears to be short. One way or another, I planned to get off the Dex, if I could, if only to die with a clear head. The doctor initially wanted to throw everything we had at the cancer. If we did, and something worked, we wouldn't know what it was. I could see no added risk in following my more incremental path.

[An aside. Quality of life (QOL) is always a factor but, to tell if someone is truly being rational about their cancer, study how QOL is factored into treatment decisions. In the end, I see too many people disregard the QOL of life issue in favor of the possibility of an extension of life, no matter how unlikely or dangerous. They submit to difficult, low-probability chemos that, probably, shorten their lives. Hope, as I see it, has overwhelmed reason. And I've seen others pack up and quit at an early stage when many chemotherapies might work because fear has overwhelmed reason; when offered Arsenic, for example, they go to Hawaii instead. I can tell, from the nature of the discussion, when QOL has become a rational factor, one of many, in the mix. In this blog, as in my life, the most important skill to attain is the balance between hope and evidence (not, as you might have guessed, between hope and fear, although that's important too). Attaining this balance is a requirement to being an helpful participant, at minimum, in treating your cancer. It requires constant, conscious work to attain. The result is likely to be the longest life with the highest quality possible for each of us.]

So test we did, and the wholly-unexpected drop in the cancer was so large as to be a hit upside the head: stunning, impossible, from another planet. A 2/3 drop looks a lot like a bloody miracle. One that definitely needed an explanation. And, after more than five months of horrible news, which downwardly adjusts large portions of the mind, I needed an upward attitude adjustment. This is not news that can be absorbed overnight. I'm still not through processing.

 

I got the news at the end of a horrible two weeks. Not long before, I passed by my friend Derek S. who was waiting to see our doctor. He was fully expecting to be put back on DVD-R, which he believed had been working for him. Instead, our doctor told him that there was nothing more that could be done for him, that hospice would be called, and that if there were an emergency, they should call him, not 911. For weeks afterwards I wondered when I would hear the same thing. There was some post-traumatic stress disorder for me, even though I hadn't directly witnessed my doctor's administration of the last rites.

You must understand the timing. I was due to start Arsenic on Tuesday afternoon and had an endoscopy/colonoscopy scheduled for the same morning. If you've been prepped and scoped, you know it isn't fun. I also knew that it would be the day that would be forced to take responsibility for ending the life of my beloved cat companion of nearly eighteen years, Yeti. I could not let my suffering prolong his. November also marked the tenth anniversary of the death of my Mother, and oh g-d did I need her now.

I was also trying to recover from ten days of radiation to my thoracic spine. There was only one active, persistent spot on the CD-Pet scan (the rest had burned out), so it was radiated to preserve future spinal function (I was entering the "preserve functioning" phase of the end game). The radiation had torn up my esophagus, so every swallow was a torment.

The neuropathy in my feet, and undifferentiated back pain, was forcing me into more vicodin than I  would like, up to two every four hours. There was also a pain in my left side after the colonoscopy.

I had wheezing bronchitis that gave me no rest for many weeks. I sounded, upon soft exhalation, like I had swallowed a oboe reed. My bird, Zombie, was starting to bite herself.

 

And, finally, I had blundered badly in an encounter with La Migra (I have no idea where they truly fit into the complicated immigration structure of today), but they are the police, and I came close to losing Ivonne forever to deportation because of my preternatural naïveté. I was only saved by dumb luck. Which will be the subject of a later post.

At best, I could perhaps expect the Arsenic Trioxide to extend my life a few months.

All I could do was watch TV.

Then, there came the astonishingly good and wholly unexpected response. Why such a response now?

We stopped the Arsenic after one or two infusions and repeated the Dex test. Except I was weak in the knees. I didn't precisely repeat the dex regimen, which was 40mg on Tuesday, then 20mg on Saturday and 20mg on Sunday, followed by measurement on Monday. I got weak. I skipped Sunday. And the cancer number went up a little. Stupid, stupid, stupid. Dex attacks judgment. So after a struggle to think clearly, I realized I had to repeat the first test precisely, then go higher if needed. So the third week I did and the number dropped again. 

From this we deduced, doctors and I, that there wasn't a simple dose/response mechanism here. In a simple dose/response, the more you give, the larger the response, the less you give, the less the response. Predictable. But we were seeing that there is in fact some combination (regimen) of days and doses that was high enough to work, and, if given less than that, in some sense, too low to work. A nightmare for Operations Research to figure out. We had found a trigger or threshold effect. Eleven years in, I'm still learning new things about Dex.

An alternative theory was floated: that there had accumulated a large pool of dex-sensitive cells that were killed off en masse by the the first dose. The rest were presumed to be resistant. After the second week, the Week of the Weak Knees, the question wasn't answered. But after I repeated the first regimen, and got another drop, we could discard the large pool theory. We were definitely looking at a threshold or trigger, as yet undefined, but one that we knew, because of the failure of the second week, we had exceeded but perhaps not by very much. One single 20mg dose on Sunday (missing) made the difference. Adding it back resumed the drop.

And what a difference it made! I had inadvertently opened a door to a way out of the End Game. I mean, this is not just a lab-test miracle, but something that can completely change my future for the better. It in fact has given me a future.

Immediately, we started talking about having a reduced-intensity allogeneic transplant from a matched but unrelated donor. We had a way of lowering the tumor burden that was an essential component of the process.

In an transplant like this, donor cells are given. They are a close enough match to my own, in theory, that the resulting immune system does not attack and kill me, but not so close it doesn't recognize the malignant plasma cells as being malignant. When the match is correctly tuned, the new system attacks the myeloma with a manageable version of Graft-Versus-Host-Disease (GVHD).

Ten years ago, when this was first suggested to me (aSCT, then allo), the transplant-related mortality rate was something like 40%. The matches were done in the in the old way, where a 7-point HLA match was considered perfect. No one could explain why results for MM were so poor while the results for other cancers were so much better. It was not the kind of gamble a beginner needed to take, and not clear that it was the kind of gamble worth taking at the end of the fight, either. It was like playing Russian Roulette with half the cylinders loaded.

However, today, matching is done at the gene level. The old system has been abandoned for us. The probability of transplant-related mortality is now, I believe, a little lower than 20%, and it doesn't kill you on the spot, either. It might take years of fighting horrible GVHD before it kills you, which is a lot more time than I would otherwise have. And there's an additional promise: there's about the same chance of actually being cured (or, perhaps, being in a permanent complete remission). In between? About the same result one might get from a traditional autologous stem-cell transplant.

(Don't quote me on the numbers;  they aren't backed up with published studies, although if any of my readers can point to some in the comments, I would appreciate having them.)

So, to back up, I go from the expectation of certain death in the near future to the possibility of cure in a single week, and that being the week after a horrible month, perhaps the worst in my life.

I believe in evidence-based medicine. Finally, I had evidence I could build upon rather than just cringe at.

And, now, for a short diversion to the South Pole to meet a couple of  characters, Roger Mear and Robert Swan. I have their book somewhere, A Walk to the Pole, and remember only a small part of it, which I will probably relate incorrectly until I can find the bloody thing and correct this entry. I may be miss-remembering.

They wanted to solo walk, unsupported, to the South Pole, old style, like Robert Falcon Scott (who, with companions in a major expedition marred by major incompetence, died trying it in 1912). But here's the part that I may be ascribing to the wrong fools. They studied the plans of another man who had planned such an expedition, perhaps to take place in the 1920s, that might succeed where Scott had failed. Amazingly, the man was still living, I believe, in Switzerland, and still had the plans for the never-undertaken expedition. He was in his nineties. The lads visited him and spent time studying his plans. These plans, you must understand, were for their time as large and complicated as those which took us to the moon. Warehouses full of paper. It took major planning just to get the expedition to New Zealand, let alone Antarctica.

 

When Mear and Swan had finished with the study, they came up with a sentence that will forever stick in my mind. They said, quoting from memory, "It was the perfect plan: there was no margin for error." Which, to this day, represents to me the most concise self-contradictory statement I've ever read. The perfect plan would have contingencies for every possible eventuality! The perfect plan would never lead you to a place where there was nothing you could do but die. How nuts can anyone be? (Read the book. Pretty nuts.)

Well, here's my perfect plan.

First, we use dex alone to get the number down as far as it will go. When the number stops dropping under the current regimen (Wed 40mg, Sat 20mg, Sun 20mg), we go up to see if whether above the threshold there is a common dose/response mechanism operating. If so, we ride the number down some more. Then, when we're sure we've gotten out of dex what it can do, regardless of the depth of the result, we add Arsenic. This is because the allo needs a period of three months in which no chemotherapy can be given. Chemo would destroy the graft.

That doesn't mean I have to be in complete remission for three months. I might very well have an increase in the cancer that would normally indicate treatment. But the increase can't be so bad that I have to have it during that period. Arsenic Trioxide is all I left have that offers the promise of such an additional benefit. Dex alone can't be counted on to provide a long quiescent period after cessation.

Because of the response, and the period of Dex alone, when we add back the Arsenic we will be able to see whether it is effective and measure the effectiveness of the Arsenic/Dex, if any. If it helps, we can ride the number down more. The allo would take place when the minimum was reached on the combo of dex and Arsenic. There is no possible way to predict when that moment will come, so the timing depends upon lab tests. A wild guess would put the date for the allo in February.

In the meanwhile, Medicare, which I'm on, does not pay for allo transplants for multiple myeloma. Period. Good luck discovering the reason why, and, when you do, please tell me what it is. On the other hand, there are two Medicare Advantage HMOs in San Diego who claim they will cover the procedure if it can be shown to be medically necessary even if Medicare itself will not. How likely is that? We've tested the system gingerly, and maybe it's true. So on 1 January I switch to the one of them that uses my transplant doctor's organization as a provider (talk about good luck) and we go for medical necessity. Will it be approved?

Then we have to find a compatible donor. It may be easy, it may be impossible. We won't know until we can start looking, which can't happen, I believe, prior to the authorization for the allo.

If we have a donor, and we have our numbers low enough, and the insurance will pay, then it's a go.

After that, it would be good to find myself in the 80% or so that is not killed by transplant-related GVHD.

To sum up, it is the perfect plan: there is no margin for error. Every one of these steps has to be successfully reached, none are certain, but the chances of reaching them aren't stupidly small either.

There is even a realistic chance of cure in the probabilities somewhere.

Now tell me this isn't a miracle!

I've lived without hope for months. I am unable to base hope on religion or delusion. I need something real, something tangible, evidence, if you will, upon which to base hope. I had none. Everyone wants you to have hope. They call it thinking positively, or having a good attitude, and imagine, somehow, that a hopeful person is more apt to survive than one who feels hopeless.

But hope clouds the decision making process. It is what causes people to lumber to clinics in Mexico to be injected with extract of peach pit (Laetril). Or eat massive amounts of macerated fruit. Or imagine that g-d has cured them and that they need no further treatment. Or frantically insist on being over-treated despite all of the evidence in the world that it will make their remaining time worse or shorter.

But real hope, based on data? From that you can derive a plan, something rational that can be done to improve your chances of survival significantly. Doors swing open, the maw of the grave recedes, and the biggest gift of all — time — can be used to advantage. There can be a plan that makes sense, even if it is a perfect plan. You can know what to do and when to do it.

I have hope. I earned it. I can indulge in it. There is a plan. I'm following it. I feel better and stronger every day (as the numbers drop, as my gloom recedes). I can have a future and it is ok to anticipate having it. I might even beat this thing.

Twice in a single year I have been given miracles. Twice, in what I thought was the least-likely possible period of my life, my hard work and dumb luck and I don't know what else have conspired to make the impossible become possible. I am happy. I have a good marriage. It is likely that I'll live much longer than I thought I would. Maybe, just maybe, I'll be cured. Even though it isn't likely, cure is possible! All I need now is a bit of luck....

Is it not true to say, perhaps, that for an unlucky man, I'm the luckiest man you know?

 

Scrooge Discovers He Has Survived the Night!

Two Miracles

I'm a scientist. I don't believe in miracles. They are impossible. However, twice this year I have been presented with an event so improbable and yet so undeniable that my logical, analytic brain staggered as if knocked out in a WWE Smackdown. My brain still cannot explain away these, what shall I call them, great, unexpected gifts? (None of my terminology seems to be correct. We like to say that the probability of an event is "vanishingly small," for example, if the probability of occurrence is so small as to be as close to impossible as it is possible to get without actually being impossible. Science inserts precise terminology into fuzzy discourse so that we are all forced to talk about things we don't understand with words we do understand. I remain at a loss for words.)

You all know about the first miracle: love at the end of life. Ivonne and I have been married since early September. I laugh when I get calls from old friends, who somehow manage to ask me, ever so carefully, how my marriage is going, as if expecting me to say, OMG, I've made a terrible mistake, what on earth am I to do!

It was no mistake. The love deepens. It is real. I have a wife, I am a husband. I am enjoying every day of it, and I am taking on my responsibilities as a new step-father with careful gusto. I know there are no fools like old fools, but if you've been following my blog, you know that my mind cannot ignore negative evidence even when it is telling me that there is no hope and I am going to die soon. The chances of my being fooled either by her or by myself for very long are, indeed, vanishingly small.

On the other hand, my friends and her relatives have had a problem absorbing this miracle. I've had to shake them awake because I really don't know how much time I have left and it is of critical importance to me that those who have known and cared for me the longest understand that this marriage is real and beautiful, and that I want them to see this for themselves so that they will believe it and, if necessary, help Ivonne when I lose the battle against myeloma. So one by one, friend by friend, I persuade them. Not of the reality that I have made a great marriage, but persuade them to act quickly to find out for themselves.

I reached a milestone of acceptance with Ivonne's family not long ago. The Mexican family is the most important structure I've found in Mexico. I have enormous respect and admiration, even envy, for how it works. In something else I must write about before too long, they have moved heaven and earth to make it possible for Ivonne to come to America to be with me despite the best efforts of my government to prevent us from being together. On the other hand, they have variations of the same problems as my old friends. Is this on the up-and-up? Is it even possible that this relationship is real and honorable? It can't be! Is a pathetic old man paying for sex but can't stand the guilt so decides to marry? What is going on in Ivonne's mind? Is it for the money?

I confess the familia de Ivonne Guerrero Garibay is far too complicated and enormous for me to understand how it works, but I do know that Ivonne's uncle, tio Jesus, is important. I had never met him. He was not seen on the trip to Mexico I took to meet her father and the children. He skipped the wedding. There has been zero communication. Yet he lives next to Ivonne's father and is active every day in taking care of her children.

So first, I decided on a wedding gift for Ivonne's father that would get attention. Not because it was terribly expensive, but because, I hoped, it would be deeply thoughtful. It would send the message that I care about having a good relationship with him.

During the visit to Mexico when I met him, he brought out his Spanish guitar to play and sing for me. I had to encourage him at one point by asking to play a little for him, and then tried to resurrect some three-finger folk blues from which, for a few summers, I earned a living. But the guitar really was so old and beaten up as to be unplayable. Bent neck, missing fretboard pieces, permanent capo to help with the tuning, a mess.

But I'm a musician myself, and although he was trying to play show pieces and sing American standards (like My Way, which I loathe), I could tell even without his being in practice and with his unplayable guitar that he had been very, very good. He used to sing for money in Mexico for Mexicans, who seem to be a lot more critical about their music than as a rule we are about ours. He (and Ivonne) know everything there is to know about every mariachi song since they were first sung. True experts on the tunes and the words, they can probably play and sing all of them expertly. Awesome.

I also saw a bit of tragedy. This impressive musician without an instrument and out of practice! I have little knowledge of why, in his old age, he's stuck this horrible guitar, but from that moment on I knew this was a problem to fix. I just needed the opportunity.

And, then, came the wedding. And the tradition of giving a gift. Ole!

I shopped for weeks for a Spanish guitar that would be of sufficient quality to enable its owner to fall in love with it, the way we musicians always fall in love/hate with our instruments, but not so expensive as to send a message that could be misinterpreted. That is, I needed the minimal instrument that was actually a professional, playable, beautiful Spanish guitar. Also, it actually had to come from Spain (I thought that part a necessary indulgence.)

After the guitar arrived at my house, I spent two weeks playing it despite the problems that piano players have with guitars (finger-tip callouses, finger nail length) and my own horrible lack of practice. Tone, touch, tuning, balance, everything I knew about, I wrung out. I hoped, despite his being a much better guitarist than I would ever be (the piano is my thing), that I was advanced enough to make this decision. But it is scary. The relationship between instrument and musician is so completely personal! Buying one is like deciding to get married, and not for the first time, either.

I wish I could have delivered it, but another trek across the border had become impossible. So I wrote a short note of apology, put it with the guitar and sent it across. Then, I waited. Would it be good enough for him to love? Would he realize that I hadn't spent a fortune in money on it, but had spent a lot of effort on the choice? Would the message get through?

A few weeks after the wedding, a small vignette comes back to me. Rafael (father) and Jesus (uncle) had been seen examining and playing the guitar. The word came back that they looked at each other and asked, is this real?? Evidently, I had passed the first test! I knew that the "this" was ambiguous (Mexicans are nothing if not subtle). It could be about the guitar, it could be about the marriage. But at least I had inserted a big question mark into the system, something I desperately needed to do.

Much later, as we learned to know each other a little, I knew I had passed at least part of the test. For some reason (unspecified) Rafael couldn't bring some important legal documents to America for Ivonne to sign: Uncle Jesus would be bringing them across himself.

Holy shit. I was in. I don't know how la familia understand this marriage, but I think they think its real. It was a short meeting, my Spanglish wasn't really good enough yet to understand him, but when he reached out to physically touch me,  I knew an important milestone had been reached.

But there had to be another, and I did not know when or if that one would come. I just had to wait (espero should be sewn into the flag of Mexico, as it means both "I hope" and the imperative, "wait.") Was the guitar good enough?

Two weeks ago, Ivonne connected via teleconference with her kids in Tijuana and chatted. As they talked, I could hear Rafael in the background working with the guitar. He wasn't playing it. He was practicing! I heard him work at what a bluesman might call jazz licks, and I could hear him listening to the result and trying to make them better, more perfect. He didn't realize I was listening. But I listened. And the bond was there! The musician had an instrument!

So I broke in. I hear you playing, I say in Spanglish, and he responds by reverting to his show pieces, which he hadn't practiced. Malagueña, that sort of thing. He stopped partway through. I said, no, I heard you practicing earlier. You were practicing!

His simple response: gracias.

De nada, Señor! As it turns out, it was then that he remembered that he had been playing all morning and had completely forgotten to pick up one of the daughters at school two hours before. He rushed out to get her. Tears came to my eyes as I laughed. I'm in! Maybe they understand this marriage, maybe they don't, but the family knows it is real and honorable.

Soon, I hope, with the blessing of the Immigration and Naturalization Service, Homeland Security, La Migra, and g-d only knows whom else, the impregnable barriers to travel to Mexico will be torn down so that Ivonne and I can present ourselves to the thousands of aunts and uncles, grandmothers and grandfathers, cousins and nephews, as a couple. For the first time in a very long time, I belong to a family. This is a miracle.

MIRACLE TWO

I think I've written myself to exhaustion for the day. The next post will tell you all about miracle two. But, first, have a look at this chart:

After more than five months of unrelenting bad news, including the failure of bendamustine after the wedding, the numbers were spiking upward at a rate that meant I needed a miracle were I to make it much longer. Look at the red line, which is a measure of the number of plasma cells (and, therefore, malignant plasma cells) in the body. It doesn't take much imagination to see that if the trend continued upward at such a high velocity, there would be nothing to me but malignant plasma cells before too long. I would have no working immune system. My marrow would fail. And that would be that.

Then, the wholly unexpected miracle. Beyond my imagining. In fact, I was firmly convinced, on the basis of evidence from earlier this year, that I had passed a horrible milestone in the treatment of myeloma: I had become resistant to dexamethasone. But you'll have to wait a bit longer for that story. Suffice it to say for the first time in months, I have been given hope—legitimate, evidence-based permission to indulge in hope, and it is wonderful. Which is what I want to tell you about.

If I don't post soon (high-dose steroids make writing very difficult for me; I have only a day or two a week during which I can do it), may this holiday season be warm and loving for you, my gentle readers.

Dex and Dope

Highly intelligent people often display a huge gift: the ability to rapidly and distantly free associate, connecting ideas to areas that are so far away that most people can't see the connections unless they are patiently taught. There are other aspects to intelligence, of course, but the ability to free associate over vast mental distances is one of the most obvious to the sensitive onlooker.

At the same time, the decontamination of genius by neurosis is one of the most challenging tasks that can present itself to a psychoanalyst.

With respect to myself, I find that Marinol, the synthetic but legal (and generic) version of marijuana (actually, of the tetrahydrocannabinol component only), intensifies free association, rather like deliberate downshifting and revving up for performance driving. Free association remains a principle tool of psychoanalysis (and of psychiatry in general, if that secret would be admitted, at least until a pill is discovered that cures neurosis). I keep a journal of the torrent of my thoughts, especially noting the free associations. In fact, the purpose of keeping the journal while in an inebriated state is to deliberately provide a mechanism to provoke and record free associations, but my story of how to do that safely is not safe for you to use as a model, my readers, so I must leave it out. Tinkering with free association can be dangerous if there are preexisting, serious unresolved mental problems differing from the otherwise "normal" victims of myeloma who must take dexamethasone. Whoever they are. Get a shrink first, especially if you haven't taken Marinol or street pot enough to recognize and fend off a bad trip. Say "psych consult" to your oncologist, who might prescribe Marinol but who is not structured or perhaps even trained to handle a seriously-bad reaction to its combination with dexamethasone.

If  any of you have tried Marinol or the much-improved street versions thereof, or simply observed someone else high as the space shuttle, you'll note the moments when, in addition to promoting free association, the drug also plays havoc with short-term memory — namely, when you hear this: what the hell was I thinking before I had this thought? It seemed important and I don't want to lose it, but I just don't remember. Help?

Normally, the FDA would write that problem down as a negative amnesia-like side-effect of Marinol as a medicine. But in this special case, negatives are positive.

This is because many or most of us who have to suffer through high-dose dexamethasone also experience obsessive thinking or exhibit frankly compulsive behaviors. High-dose dexamethasone can act as a trigger for these protective mechanisms. Patients who have minimal obsessive-compulsive tendencies may reveal them. Those who are borderline can turn pro. Psychotic breaks are not uncommon. Dex can do whatever it wants. If you are a Borderline Personality Disorder, it probably will do something entirely different to you.

Nurse Ratched

Think of Marinol as a poor-man's electro-convulsive therapy (ECT). The FDA-assumed negative side-effect is what we want from it — a breaking up of the train of thought, and especially the location of the jumping-off place. It is difficult to obsess,  or, for that matter, to descend into fear or run madly around with elation when one finds oneself in an instant thinking of something else entirely, like how magnificent these cookies taste! I hope there's another box!

So I manage to maintain a more-or-less even keel on high-dose dex days by taking Marinol and dex at the same time as early in the morning as I can muster. I've been countering 20mg dex with 2.5mg Marinol, and 40mg dex with 5.0mg Marinol. Its use has made the days easier for me to bear and the nights easier to sleep through (I suspect that, for me, obsessing at night causes my sleeplessness with dex).

By the way, I find Seroquel to also be a poor-man's ECT if taken two-or-three hours before time of sleep. In the morning, I have trouble remembering what upset me the day before (incurable, universally-fatal cancer...was that it?). The problem is that Seroquel does a whole lot of other things, like leaving a hangover-like effect lasting into the next day, even though we myelomiacs generally take a very very small dose of a very very big drug.

Of course, I never drive on dex days, so the issue of driving while on dex/tetrahydrocannabinol never comes up.

Another thing to watch out for, and for which Marinol has a use, is the mind's natural ability to ignore or shut out physical pain. I'm no expert on evolution, but I suspect that the ability to ignore pain or simply not feel it when function is critical is a necessary component of survival in battle or in flight from battle. (There's a big difference between ignoring it and not feeling it in the first place. The first requires will power, the second is autonomic. I'm not sure I believe in the first.) The trouble is, it takes a lot of hormones and obsessive not-thinking (it's the same, just invert and call it repression) to protect us from the neuropathic and bone pains from which we myelomiacs generally and genuinely suffer.

Marinol's ECT-like effect may also make one aware of the physical pain from which one has been dissociating. In other words, you may suddenly realize that you are heavily in pain and exhausted from the effort of not feeling it, possibly becoming aware of it after a freely-associative jump. Dissociation is, to me, a kind of repression. Once connected with the pain, it is as if free-association led there, because, at a deep level, the system is in an unconscious emergency mode of operation. The tool for treating repressed thoughts (which is what free association is) produces results similar to the goal of treatment of dissociative reactions (such as not feeling physical pain) — by whatever means, one becomes aware of what is not being thought about or sensed. It must be emphasized that what is not being thought about or sensed is not small, but is generally overwhelming (as it must be to be able to initiate the protective mechanisms I've been discussing).

Marinol may help you get there, and getting there is important to do. It's important to turn off the flight-or-fight like response and feel the pain, regardless of type, in order to be kind to yourself, relax, and sleep. You may suddenly be overwhelmed with an awareness of how tired you are. Luxuriate in that tiredness. It is difficult to bring to consciousness either repressed thoughts (e.g., incurable cancer) or unsensed pain because both are primary survival mechanisms inappropriately — because of dex triggering and amplification — drawing away a huge amount of psychic and muscle power. Burning you out.

If you can feel the physical pain, then you know to take your Vicodin. If you think of what you were trying so hard not to think of, well, think of it now as hard as you possibly can. If it's scary, which is highly likely, surrender to the fear, at least for the time being — don't fight it off. Then try Xanax or Seroquel or whatever else your shrink prescribes for relief if the psychic pain doesn't lessen enough to let you sleep.

Freeing your mind (of psychic pain) or your body (of physical pain) by using medicines like Vicodin and Xanax is by far the healthier option for us, even at the price of a degree of conscious but temporary suffering. The suffering is temporary because the trigger of repression is really not all that good at making fine distinctions between concrete, immediate dangers and future possibilities as amplified by dex. Once what is feared is seen not to be immediate, the defense can switch off and the whole can recover.

Glad to be Wrong!

Scientists are extremely opinionated, despite the occasionally-awkward public attempts to appear to be otherwise. By "opinionated," I mean that we passionately believe something to be true despite lacking proof.  But, as scientists, we want to do the arduous work of designing experiments that would confirm or deny our beliefs. (By the way, in my experience, and able to offer no explanation, scratch a mathematician in particular and underneath you will find a lover of the arts, including poetry. Among the group you will find a fair number of amateur actors. Mathematicians are by far the most emotional people I know.)

On the other hand, scientists are readily-adaptable people. When confronted with a truth that belies their belief, they adopt the new truth as if they had never thought otherwise. Their beliefs change when the facts change, and so do the questions and experiments that subsequently arise.

I passionately believed that my cancer had become resistant to steroid treatments. Not only are steroids the most effective treatments we have (as single agents and in combination with others), but not responding to them is a horrifying prognostic indicator. I've known some who were resistant to steroids from the beginning: they are all dead. When the disease evolves to that point, nothing further is going to be easy. It's a definitive signpost of the endgame.

I had evidence but not proof. When I stopped responding to DVD-R, which includes just about everything we've got including dexamethasone, our strongest steroid, I thought I saw the signpost. That was last May Day. I've had no other good news since July.

But I wanted proof. I had two reasons. Steroids eventually destroy the adrenal cortex, which leads to a life-long need to take low dose steroids. Secondly, high-dose steroids drive most of us crazy to some degree or another, having a profoundly negative effect on quality of life. Quality of life matters, sometimes more than length. I wanted to get off steroids completely, and if they don't work for me, why am I hammering myself with them?

The experiment is easy. Go up to the most-effectively known treatment schedule for steroids for a week or two, then measure before starting any other chemotherapeutic regimen. My cancer number was an astronomical 304. If it went up or stayed the same, it was proof that steroids were of little use to me and I could stop them. My anxiety came from wondering just how much higher the number would go before starting the arsenic.

Instead, as you can see from my partial chart, the number fell by more than 2/3, the most dramatic drop I've ever seen, to 102. The new truth? Weak steroids have no effect on me, and my dose/response effect is not linear (meaning, there seems to be no smooth relationship between response and dose level). Instead, there's a threshold that must be met before seeing this kind of response. The response may or may not be linear with greater or more frequent doses than those effective at the threshold.

One nagging failure of design was that the experiment lasted only one week and confused dosing. On Tuesday, I took 40mg of dex orally (the largest common oral dose we use), and on the following Saturday and Sunday, one dose of 20mg each day (two days a week of 20mg each day is now a common dosing whose effectiveness has not yet been disproved: there is some evidence that higher or more frequent doses produce poorer outcomes).

On the other hand, as a scientist/patient, and having received the first morale-building good news in months, I am filled with hope. Many ugly likelihoods are gone. I have NOT seen the signpost pointing to the end of usefulness of steroids in my disease. I WILL likely make it through January when it is my intention to undergo a potentially life-saving reduced-intensity allogeneic transplant from a matched but unrelated donor (it can also kill me). If the transplant happens, the most likely outcome is at least a few more years of life (albeit with some annoying but likely complications).

Yeti and Me

Yeti: 1992–2009

Ivonne summed up Yeti better than I could, in a single sentence: Yeti was all about love. He greeted every visitor, remembered them, had the loudest purr of any cat I've ever known (as a vet tech once said, "He has a good motor"). Visitors who didn't love, or at least tolerate, cats, were not welcome in my house.

He could also hug you with his arms, and squeeze your finger with his paw.

He was my best buddy for nearly eighteen years. Every morning, I would awaken and walk down two flights of stairs to make my coffee, toast my bagel, and fetch my newspaper. Every morning for many years he would beat me to the first floor. The one time I beat him he went to the vet within the hour.

He always knew when I was feeling poorly, such as during the eight months I spent in a hospital bed and wheelchair with round-the-clock nursing as the result of a motorcycle accident. He was nearly always beside me on the bed, touching. He had to give up his usual duties for the duration.

Yeti had many duties. One involved periodic inspection of kitchen and bathroom cabinets. He would point his nose at one of interest and stand completely still until I opened the door so that he could go in, look for deficiencies (or mice) and correct them.

The yard was his outside territory. He like to go out after breakfast, when I would fetch my newspaper, and circle the property, looking for interloping cats, rodents, or anything else of interest. When I would call him, he always came running. Sometimes he would stay out all day and roam quite far, but he was always home at 4:30 sharp because he had an internal, self-adjusting, infallible kitty watch. It usually took him but one day to adjust to daylight savings time.

I fed him at precisely at 4:30 (that way, I knew he would always be home before dark). Even last week, if you didn't know where he was or what time it was, at 4:30 he would find you, have dinner (always meat) and take a nap. (He preferred raw meat, which required excursions to an expensive, magnificent meat market.)

Yeti was a pedigreed cream-point Himalayan. Say what you will about purebreds, they have a LOT of personality. I loved him beyond all reason. Every day of his life I cleaned around his eyes and nose (Himalayans, with their pushed-in noses, usually collect crud around their eyes). At first he didn't like my doing it, but later decided that my cleanings were a kind of love, so he purred and didn't object. I believe that he felt that no matter what annoying or painful thing I had to do to him (like give him a bath), it was because it needed doing. Amazingly, he was completely immune to fleas. Cats don't get better than that.

At one point, I hoped, with my weak knees, I would die before he did. I couldn't face the the possibility of losing him.

These last two years have been hard. He developed arthritis in his rear hip joint, which caused him to slowly lose feeling and control of his hind legs. One by one he had to give up things he had done for years, like going outside. I remember the last time he successfully jumped up on my bed, and the last time he tried (and failed). He lost most of his hearing. I remember when he stopped being the lion king who ruled over his two young female kittens (also Himalayans). It became harder and harder for him to balance on his hind legs, although only last week he made his last trip up the stairs to sit in my lap, purr, hug my arm, and have his eyes cleaned.

He wasn't suffering pain: he was losing hind-leg sensation. For the last few weeks he had difficulty climbing over the low-ridged catbox and had accidents in the laundry room. But he was still there, still my Yeti.

But not last Monday. I don't think he could stand at all. For the first time I saw suffering; not of the pain kind but of bitter frustration of loss. He had been reduced to doing circles trying to gain enough leverage to stand but couldn't.

It wasn't the best of times for me, either. My cancer numbers were rocketing dangerously out of control, I had no food and plenty of clear slop to drink for the day prior to my endo/colonoscopy Tuesday morning, was flying on steroids, and was scheduled to start Arsenic on Tuesday afternoon (not an easy course of treatment to accept). But I awoke at 2am Tuesday knowing that Yeti's time had come. I asked whatever gods may be for one more day, one more rally, because I was at the end of my rope. I wanted one last day to hold him, clean his eyes, and listen to him purr. It was not to be.

One glance as I flew out the door to go to the hospital confirmed everything. I couldn't think about that. I had to go. When I finally game home, he was in a coma. Ivonne wrapped him in towels and brought him to me. I spent more an hour holding him. I gave him couple of syringes of water, but there was no reaction. His eyes reacted to light, but I don't think he actually woke up. Maybe the vet could rehydrate him and bring him back, but he had nothing left, really, to come back for.

I have no words for how difficult it was for me to accept what I had to do, especially considering how weak I was. But I took him to the vet and asked her to help Yeti pass over. He died in my arms, never regaining consciousness. Later this week he'll come back to me in a cedar box. I intend that he shall share mine, when the time comes.

I grieve for me, too, selfishly. Over the years, like Yeti, the cancer has forced me to give up so many of my routines and duties, starting with my career eleven years ago. Only last year I was weight lifting at the gym two or three times a week. Emotionally, I haven't given that up, although physically I haven't been to the gym this year. I gave up most chores. I hire people to do work around the house I would have previously taken pride in doing myself.

The amazing thing, the most improbable and clearly miraculous thing that has ever happened to me, was finding and falling in love with Ivonne. The chances, given my situation, of such luck, were vanishingly small. Our love makes up for so much that I have had lost!

Still, I gave up most concerts and movies (now Ivonne and I watch Blu-ray DVDs with 7.1 audio instead on a magnificent 62" screen); ditto fancy restaurants; most dinner invitations. Lately, I haven't had enough energy to work on the serious piano pieces I studied intensely earlier in the year (e.g., Brahms Gmin Rhapsody, Op. 79, #2). I spend too much time in bed, reading. I don't cook as often or cook things requiring a lot of time in the kitchen. I don't shave or bathe often enough.

I did manage the two biggest projects since my retirement from work in 1998: the wedding, and managing the amazingly complicated and expensive process of making my bride, Ivonne, a permanent resident of the United States. It took three months of complicated study and ended up as five petitions, two-sided, plus supporting documentation one and one-quarter inch thick. Someday I'll write about it because it's a process, if you are unfamiliar with it, as hateful and adversarial as you can possibly imagine. Welcome to America!

In the end, I think I was grieving for both our losses, Yeti's and mine. Having to give up big chunks of our lives was bad enough, but at least his final decline was quite rapid and seemingly painless: will mine be as well?

Bye for Now

And Away we Go!

The squiggly red line, which approximates the number of plasma cells in the body, both normal and malignant, has reached the stratosphere. If we can't stop its rise, it will stop mine. It rose seventy-three points in one week. Malignant plasma cells crowd out what I need to fend off infections. The value should be 1.94 or less. It is now 304.

The time has come to make sure that my emergency go-to-hospital kit is properly packed (warm socks, pajamas, underwear, robe and slippers, ordinary meds, toiletries, Marinol (synthetic marijuana), cell phone and other chargers, computer cables, hard New York Times crossword puzzles, pencils, journals, a huge book I can read for weeks, etc.). Also it is time to activate wireless broad-band access for the laptop (so I can watch anything I've recorded on TiVo at home — see Slingbox).

I need to keep going until January, when there may be the life-saving possibility of a reduced-intensity allogeneic transplant from a matched, unrelated donor. At this point, the staying alive bit is not a sure thing. Until then, I have to hide from sick people (except for Ivonne, who, with near-perfect timing, has come down with a belligerent cold), and the cancer has to be relatively kind to my bones and organs.

There never seems to be enough time for certain important things, yet I realize I've been blessed with a great time to re-do my Last Will & Testament! Tag family heirlooms with where I want them to go! Videotape final curses for my heartless children!

On Wednesday I took a huge dose (40mg) of steroids (dexamethasone). Saturday & Sunday, the steroids at half-dose will be repeated. Then blood tests on Monday. Throw in a colonoscopy and endoscopy Tuesday morning (I'm looking forward to awakening at 4:30am to drink a half-gallon of hog slop). Then, on Tuesday afternoon, the poisoning with arsenic trioxide, velcade, & vitamin C (IV) will begin, and will be repeated on Friday if I survive. (The regimen is called ABC.) Oh, and Medicare might not pay for it, so it might cost me $2K/week to experience element 23 of the periodic table. For those of you obsessed with "eating healthy," I would like to point out that arsenic is thoroughly natural and is probably available at Whole Foods.

Please Pass the Arsenic

In the eleven years I've been fighting multiple myeloma, having a long-term plan has let me live a relatively normal life. In the beginning, I didn't know what was important, so I studied all aspects of the disease. Back then this kind of study was quite difficult because the Internet was still young — the only way to get a journal article was to xerox it at a medical library.

But as time passed, I was able to narrow the focus considerably. I realized I needed to know only two things: first, how to read my labs so I would recognize when a change in treatment is needed; secondly, the set of available treatments (e.g., principal drug, manner and frequency of administration, likelihood of success, side effects and possible complications) and procedures (e.g., autologous transplant, allogeneic transplant, radiation). Planning develops the rationale that helps to determine the order in which the various treatments should be tried. (Determining the best order is a matter of considerable medical controversy.)

The final element of planning is to determine empirically the maximum safe interval between measurements of disease activity. I can then put the date of my next set of tests/measurements on the calendar. At one point, I was safely measuring at four month intervals and was thinking about stretching them to six.

What does planning like this give me? The pleasure of giving the disease not one more minute of my time than is absolutely necessary. The pleasure of being fearless for long periods despite having an incurable, universally-fatal disease. Yet so many of my friends have turned their disease into a hobby! They devote obsessively large amounts of time to irrelevant considerations, such as following cutting-edge genetic-level research into improving prognosis (which is at the moment either unavailable or useless to us in making nearly all but a very few treatment decisions), studying potential causes of the disease or the mechanisms of the disease,  monitoring disease activity as often as their exasperated doctors will allow, or research into new therapies that will take years before becoming available, if at all. I think that every minute I don't spend obsessing about multiple myeloma is a minute I can spend living a normal life.

When I tell this to my obsessed friends, that I spend as little time as I possibly can thinking about, discussing, or studying myeloma, they tend to look at me with confused stares. I tell them there is no survival advantage to using my time in this way, so why do it? Maybe they disbelieve me, maybe they think I'm just nuts, but mostly they just resume talking about their obsession as if I hadn't said a word. I might as well be exhorting them in Latin for all the good I manage to do. Reason is remarkably ineffective once fear-based obsession has taken hold.

I tell them, decide what that maximum safe measurement interval is in their particular case, set their alarm clocks to that date (that is, the date when they will next have to do their labs), and realize that between now and then, there is no survival advantage to thinking about their disease. They will not die a minute sooner if, between now and then, they deny the disease a second's thought. Instead, they can live as normally as their physical condition will permit. When the alarm goes off, study the labs. Is it time to make a change in treatment? If not, reset the alarm and return to the joys and sorrows of normal life.

I've reached a treatment decision point. My labs are horrible. The evil numbers are sky-rocketing while the good numbers are falling:

And it's not just the numbers: neuropathic pain has increased to the point where I need Vicodin nearly every day; I have developed a minor but annoying case of osteonecrosis of the jaw; and steroids, which drive me crazy, don't seem to be providing any benefit.

The problem is that I've already become resistant to the small handful of standard chemotherapies for multiple myeloma, I'm not a candidate for a second stem-cell transplant even though I have stored the cells for it (because of extensive plasma cell infiltration of the marrow), and Medicare won't pay for a reduced intensity allogeneic transplant from a matched, unrelated donor until January (I'll explain that life-threatening annoyance in a subsequent post). Which means, between now and then, I can't afford to do nothing and there's little that remains to do but swallow the arsenic.

Arsenic trioxide (Trisenox) is given by infusion, not by tablet, and it's just as terrible to endure as you might imagine. Because it works completely differently from the other therapies, it has a reasonable chance of working for me, and perhaps it will work long enough to get me through January and the allogeneic transplant. The trick is to administer enough arsenic to be effective in fighting the cancer without actually killing the patient (viz, me). If you're wondering what the last-chance, last-ditch chemotherapy is, arsenic trioxide is probably it. One person I know went deaf from it (although his hearing eventually returned). As an avid pianist, the thought of losing music is difficult to bear. On the other hand, the neuropathic pain is limiting my practice time as it is.

Because so few have had to take arsenic, I'll be reporting on the experience extensively as it turns me into a hairless baby spider. Meanwhile, it is time to resume the honeymoon (we filed for Ivonne's green card a couple of weeks ago, which is a paperwork and expense ordeal not dissimilar to chemotherapy).

We Interrupt This Honeymoon....

I, the Registrar, Ivonne, and June Welsh, wife to my Best Man, Lee

Three weeks ago today Ivonne and I were married. The shock that followed the escalation of my cherished $50 drive-thru wedding to something closer to one hundred times that costly passed smoothly with the first Margarita at the reception, which I had made part of the contract with my favorite restaurant, Baci Ristorante: the best tequila, as cold as an outer planet (shaken and strained so that there would be no diluting ice) and with enough salt on the rim for three heart attacks. They lived up to their end of the deal magnificently! After the second one I couldn't even read the bill....

Mariachi "Arriba México"

The seven mariachis were superb and superbly in tune. They knew every song in the canon. Most importantly, they played the traditional Mexican wedding music for us. Ivonne's family has been steeped in the mariachi tradition for generations. Her father sang professionally with such groups and, like Ivonne, knows the music cold. The mariachi tradition is dying out in Mexico: the musicians are all old guys with few younger men to take their places. Blame the Internet and the iPod. I don't have a recording of my group, but, if you'd like, here's a sample (mp3) of the kind of music they performed.The wedding became instantly authentic when my newly-minted father-in-law teared up trying to sing his mother's song, Mi Cariñito, with the mariachis, who kindly rescued him.



The wedding was bilingual. I gave all of my responses in Spanish (or, more precisely, in Spanglish), while Ivonne responded in English (or, more precisely, in Spanglish). I hoped to make it obvious that we were sharing cultures as well as lives.

Three out of four of Ivonne's children

Curiously, there is no special word in Spanish for the newlywed. Recién casado ("recently married") is just so matter-of-fact, like saying the temperature today is eighty-six degrees. Newlyweds are precious and endearing. They can't help but show their new intimacy and the adventure of the first days of their new lives. Everyone smiles at newlyweds, everyone hopes the honeymoon will last forever. (Everyone sighs because they know it will not.) At my age, and with all of my marital mistakes, I never expected to feel like a newlywed again, but, yet, here I am, as giddy as a schoolboy. Ivonne and I laugh, delight in our secrets, and tell everyone we meet, we just were married! I smile like an idiot most of the time. Everything we do now seems special. I am loving every minute.I wish you all could have been with us for the wedding. Now, to resume the honeymoon....

Barack's Toro Moreno/Hamlet Moment

Watching Obama struggle with implacable resistance to his health-care initiative has been as exasperating as watching a full-length performance of Hamlet: although it has been obvious since Act I that Hamlet needs to avenge his father, he is hopelessly conflicted will not act! Is Obama willing to fight for the public plan (which should be medicare for all who want it) or not? Will he abandon his hopeless need for a bi-partisan bill or not?

Obama has been extraordinary all of his life, a once-in-a-century combination of brilliance, charisma, beauty, and reasonableness. He has the politician's essential gift: he remembers everyone's name. There is no dark, Nixonian underside to him. He has an astonishingly charming, wonderful family. Everyone, even his opponents, likes him.Obama understands the world he sees and has always lived in: a world full of interesting people who like him and wish him well. He has never experienced anything else.

Which is why I'm also reminded of Toro Moreno, the dull-witted prizefighter in Humphrey Bogart's last movie, The Harder They Fall. Moreno has been led by Bogart to believe he's a natural fighter, but, unbeknownst to Moreno, all of his fights have been fixed. When the unfixable title fight is finally arranged, Bogart unexpectedly takes pity on Moreno and tells him to take a dive rather than be hurt. Moreno, outraged, refuses: he doesn't believe Bogart when told he can't fight. To prove it, Bogart sets Moreno up in the ring with a burned-out sparring partner twice his age. I don't want to hurt you, Moreno says to the old man who then unsparingly, massively, and efficiently reduces Moreno to pulp.

I don't think Obama has ever had to confront the idea that there are people whom he can't charm simply by being more likable, reasonable, or respectful. He may have been an organizer in Chicago, but Chicago had never seen his like before and probably never will again. Don't imagine that he was treated like your ordinary Joe! He made some early mistakes but I doubt that Obama ever so much as broke a fingernail in Chicago, his or anyone else's, for all his organizing.

He is opposed by those who find him over-the-top charming, persuasive, and brilliant—and they are beating the hell out of him. I fear that nothing in his experience has prepared him for the revelation that the raw, bare-knuckled political world is not the same as the accommodating one in which he used to live. Last week, for the first time he acknowledged, in a painful-to-watch, near-Shakespearean soliloquy, that there are those who would defeat health care just to hurt him politically—Obama's Toro Moreno moment. Obama's innate wonderfulness has, like Bogart, fixed all his fights for him. Until now. Obama simply can't accept the idea that the "loyal opposition" is out to do him in personally.

Which brings me back to Hamlet, who simply could not believe that Claudius murdered his father in order to marry his mother despite convincing evidence of that crime and others. Substitute Senator Charles E. Grassley of Iowa for Claudius and, to tie the movie and the play together, you have the old sparring partner teaching Obama a lesson that seems to be shaking Obama to his foundations: I like you but I'm going to thrash you. Don't take it personal, kid.Claudius, having had enough of Hamlet's suspicions, dispatched him by sea with the intention of having Rosenkranz and Guildenstern, well, dispatch Hamlet permanently. Instead, discovering the plot, Hamlet is transformed from the hopelessly conflicted boy to a resolute man of action. I'd like to think that had Obama taken the ferry to Martha's Vineyard this week, he might have experienced a similar transformation. Unfortunately, Obama arrived by helicopter.

Don't Take It Personal

My late, lamented, drive-thru wedding

Fifty dollars. That's all a wedding license costs in California. Not only that, for another fifty the County will perform the service on the grounds of its handsome old administration building on San Diego bay. Throw in another ten bucks for a commemorative digital picture and you have every sensitive man's dream: The $110 wedding. California, being California, you can almost do it as a drive-through.

Even the paperwork is ridiculously simple. For example, you're asked if you've been married within the last ninety days. You say no, that's enough proof. And if you want Uncle Mort to perform the service, even though he has no qualifications other than having money you hope to inherit, that's OK too for another $50. If you need a witness, the county will throw in a witness.

But, then, what if one of you is Mexican and has an uncountable number of cousins, aunts and uncles, nieces and nephews, grandmothers and grandfathers, who are all expecting a party/fiesta? Can you leave them out and just have bride, groom, and a witness? Would they be offended or wonder how many months she is "along"? What if one of the two of you, who shall go nameless, never really had a proper wedding and would like to be surrounded by her family?

So that's when I had my first really bad idea. Why not invite them all, the entire extended family, to the wedding? To do so would have absolutely no cost. Big wedding, $110. My Scotch/Jewish soul twitched with delight. So out went the word via Latina Express (aka, cellphone)—come to my wedding!

After that, my perfect, cheap-ass plan started to go terribly, terribly wrong. First, there was the requirement for a "new, gray suit." $425. The discussion went something like this:

You need to buy a new gray suit.
Why? I already have a gray suit in the closet somewhere. I don't need a new suit.
You need to buy a new gray suit.
[silence]
OK

Then, a professional photographer must be hired (I still haven't found one: the silly buggers want $1500 minimum to cover a wedding). Printed invitations for distant or important members of the family. Transportation.

But the hammer really dropped when it became clear to me that, after the word went out, there had to be a reception where I was expected to feed everyone. I could not invite all those people to the wedding without feeding them. Isn't done! Nor was there any way to feed just part of them: if they were invited to the wedding, they would be fed. Period. So I said, why not my favorite San Diego restaurant, Ristaurante Baci? The waiters wear tuxedos and speak Spanish/English/Italian. Let's do it right. I'm damned if I'm going to have a reception at a hotel or the Hometown Buffet (although, in my temptation, they are as cheap as manure on a warm summer's day)!

Damned. That's the operative word to describe me — damned. Every forty guests at Baci will end up costing around $1,800. How many are actually going to come? This is unclear, especially when you use the Latina Invitation Service to spread the word. That cat violently refuses to go back into its bag. I have the shredded forearms to prove it. Then, there's the mariachis that I would actually like to have, but I have no idea what they might cost. No one is asking me for them, they're my idea. Plus there will have to be flowers, and what about a stupid wedding cake? So my $110 wedding that seemed such a good, thrifty idea at the time is a distant memory while I tear my hair out selling mutual funds as the market dives. You'll hear me muttering to myself, "Yo preferiría vivir en pecado" or "¿Es demasiado tarde para fugarse?" (My poor Spanish translates, roughly, to "I would prefer to live in sin" and "Is it too late to elope?")

A Much Better Wedding Estimate

Intimations of Mortality

Philosophers, because they tell the truth, are often hated. A philosopher will, after hearing me whine about having an incurable, universally-fatal cancer, tell me that there is nothing substantially different about us: we all live under a sentence of death attached to a date uncertain and should all live accordingly.

The assertion infuriates me. While being theoretically and logically correct, it incorrectly suggests a practical equivalence that simply isn't there. None of us, except for the future suicide or the death-penalty prisoner, knows the hour and minute of his death to a fine degree of certainty. People do die unexpectedly by trauma or natural causes. There are no guarantees. As the ancient logic says:

All men are mortal
Socrates is a man
Therefore Socrates is mortal

Yet there is a plain fact to be considered: the likelihood of my dying sooner rather than later is statistically verifiable and greater by far than that of my annoying philosopher (unless he is likely to be murdered by his friends as was Socrates or is otherwise in The End Game himself). My higher probability of dying sooner is not simply pertinent: it begs the question of whether it is healthy for a healthy person to live as if his death could be at any time.

No one, no matter what they claim, lives as if his time were running out unless he knows it actually is running out. For one thing, that's when the Bucket List asserts itself. (See this post.) Although some may be able guess a few of the items, the items and their priorities on the bucket list don't become clear in advance. So short of a personal experience of A Christmas Carol, with visits from three spirits in a single night, no one is truly able to live their lives as if they could die at any moment. Turn, turn, turn.

History tells us that when some people truly think the world is ending, they give away their belongings to huddle together on a mountaintop to wait for the end. Neither I nor my philosopher is doing that!

Nor is there anything virtuous in living ones life as if today could be the last day. Look at the restrictions!

Begin and end the day in peace.
Buy only for today, own little.
Work for today if necessary, and finish your work.
Make no long-term plans, start no ventures.
No problems are upsettingly important.
Cherish nothing worldly.
And so on....

Or we can imagine being perfectly healthy except for feeling that we are going to die today, so we race around taking care of the last unfinished business, or get angry, cry a lot and throw things, or perhaps compose famous last words. Usually, however, the reality is that one is too sick to do much of anything on the last day but die.

Although in general I believe in fighting denial at every turn, being in denial of the possibility of imminent death is appropriate when the probability is low. In fact, for a normal person to to live so abnormally—as if today were his last when objectively it highly unlikely—is the very picture of a major psychiatric illness. Being at peace is always good, but so is advancing ones career or deciding to get married or raising a little righteous hell!

There is another point-of-view that I am reluctant to mention because it is really quite different. The Christian Divine might sound like the philosopher when he says, in one variation, we're are all the same because we are sinners and are doomed to eternal damnation unless we live in such a way as to satisfy the rules for gaining eternal life. Therefore, live life as if you could die at any time.

The difference lies in the requirement to follow the rules, whatever they may be, for avoiding the finality of death. The hitch is this: believers will also find themselves in the End Game, when they know death is truly coming but isn't coming right away. The end-game challenges I have been describing for months on this blog happen to believers in addition to whatever process is called for by their religious beliefs. End-game challenges are unique to every individual, and, when there's time, unavoidable.

The Penelope

PS: Has anyone told you we're in the same boat, death-wise, like my philosopher? If so, please tell me how you felt in comments.

End of Life Issues, Ulysses (Tennyson), Part I

This poem, one of the most misunderstood in the English language, addresses end-of-life issues common to everyone, not just restless ancient heroes nor those of us fighting multiple myeloma. Ulysses is clearly in the End Game. I am presenting it "as is" except for marking some lines to linger over, but later may discuss the poem in detail for what it tells us about reactions to common end-game challenges.

Please let me know in comments what you think of the it.

Ulysses

by Lord Alfred Tennyson
(1809-1892)

---

It little profits that an idle king,
By this still hearth, among these barren crags,
Match'd with an aged wife, I mete and dole
Unequal laws unto a savage race,
That hoard, and sleep, and feed, and know not me.
I cannot rest from travel: I will drink
Life to the lees: All times I have enjoy'd
Greatly, have suffer'd greatly, both with those
That loved me, and alone, on shore, and when
Thro' scudding drifts the rainy Hyades
Vext the dim sea: I am become a name;
For always roaming with a hungry heart
Much have I seen and known; cities of men
And manners, climates, councils, governments,
Myself not least, but honour'd of them all;
And drunk delight of battle with my peers,
Far on the ringing plains of windy Troy.
I am a part of all that I have met;
Yet all experience is an arch wherethro'
Gleams that untravell'd world whose margin fades
For ever and forever when I move.
How dull it is to pause, to make an end,
To rust unburnish'd, not to shine in use!
As tho' to breathe were life! Life piled on life
Were all too little, and of one to me
Little remains: but every hour is saved
From that eternal silence, something more,
A bringer of new things; and vile it were
For some three suns to store and hoard myself,
And this gray spirit yearning in desire
To follow knowledge like a sinking star,
Beyond the utmost bound of human thought.

This is my son, mine own Telemachus,
To whom I leave the sceptre and the isle,--
Well-loved of me, discerning to fulfil
This labour, by slow prudence to make mild
A rugged people, and thro' soft degrees
Subdue them to the useful and the good.
Most blameless is he, centred in the sphere
Of common duties, decent not to fail
In offices of tenderness, and pay
Meet adoration to my household gods,
When I am gone. He works his work, I mine.

There lies the port; the vessel puffs her sail:
There gloom the dark, broad seas. My mariners,
Souls that have toil'd, and wrought, and thought with me--
That ever with a frolic welcome took
The thunder and the sunshine, and opposed
Free hearts, free foreheads--you and I are old;
Old age hath yet his honour and his toil;
Death closes all: but something ere the end,
Some work of noble note, may yet be done,
Not unbecoming men that strove with Gods.
The lights begin to twinkle from the rocks:
The long day wanes: the slow moon climbs: the deep
Moans round with many voices. Come, my friends,
'T is not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
And see the great Achilles, whom we knew.
Tho' much is taken, much abides; and tho'
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

Ulysses resists the Sirens