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.