Tuesday, April 21, 2009

More on the Bucket List

I wear the chain I forged in life! I made it link by link and yard by yard! I gartered it on of my own free will and by my own free will, I wore it! — Jacob Marley
Since I first posted on the Bucket List (BL) topic, I’ve discovered that some of my perfectly-healthy friends are trying to discover what might be on their list. While it is possible, I suppose, to guess some of the items (e.g., disown the children, burn the diaries), a person not playing in the End Game is merely guessing, and doing so from a healthy-person mindset.

Give it up. The BL doesn’t work that way. It isn’t something you create but is rather something you’ve spent your whole life creating, like Marley’s chain. It comes to you in its own time and in its own way as part of the process of accepting inevitable death. Items that you are sure today will be on the BL (e.g., that trip to see the pyramids) may not be on the list when it reveals itself to you.

In my case, the List tends to be limited to what it thinks I need to do next but, then, that’s the way my nearsighted mind always worked, so you might be presented all at once with a longer list.

The BL comes to the dying in response to the universal desire for peace of mind, the wellspring of all religion. If given time and ability, working on the BL will provide that peace. Of that I’m sure, because the BL consists almost entirely of that which robs us of peace of mind.

The items come to us not because we want to dispose of them but because we have avoided doing so. Few will be easy. Some won’t even be possible (e.g., too lengthy for the time left, a person involved is dead, resources are lacking). Items are resolved in one of two ways: either by doing what needs to be done or accepting that what needs to be done can never be done. Either way dismisses the item from the BL. Intuitively, a list item is better resolved directly than abandoned as impossible, but either way one can have peace of mind. Either way, the item comes off the BL.

Peace of mind can come only through acceptance. If you have a problem with forgiving yourself, it is not too soon to find a therapist to help you even if you are decades away from dying. I suspect that when the BL appears is not the best time to wrestle with the stern, unforgiving superego of your childhood.

I gave you an example in my first post on the subject, My Bucket List, of something I have had to give up: making peace with my children. Reconciliation may be something I strongly need, and which many may recognize to be important, but it is clear that my children do not want peace or are unable to risk it. So the item comes off my list. If I kept working it, refusing to accept the reality of the loss, other important items necessary to my peace of mind would not get done.

There may also come a time when the bucket list presents "one last time" challenges, some of which are doable, some not. I, for one, in a high-dose steroid fog, wanted to relive the greatest triumph of my Halcyon days, the years when I led a talented team in solving a major problem in practical artificial intelligence for the Department of Defense. I wanted to give an unclassified kick-ass presentation to my favorite defense contractor in the hope that it would resurrect the idea from the hole in which it lies today buried. Much later, after a drug holiday cleared my head of steroids, I realized that a project so highly secret could never be briefed unofficially, and that getting official approval would be an impossible nightmare. Something only a sick, foolish old man, or a BL, would think was reasonable to do: A King Lear fantasy. Ashamed, I called it off and gave it up.

Dealing with the items on the bucket list changes how one sees the world. For example, my house is filled with a lifetime’s accumulation of books. Now, when I see one, even one of my favorites, I ask myself, “Will I ever read this again”? If the answer is no, the book goes to the donation pile (except if it’s one of those I truly love, I’ll keep it to the end regardless). The BL is telling me to simplify my life, jettison the baggage, cut out the already morbid parts, in order to concentrate on the essential.

There is also the relief of giving up lifetime goals. Accepting the unacceptable by giving up a dream does free up psychic energy to do what still can be done. I, for example, want to finish my book but am coming close to giving it up because, without a period of remission, such as I might get from aSCT #2, I may lack the endurance to finish it. Writing is damned difficult: any writer who says otherwise is lying. Giving it up will free up my psyche, removing a source of guilt. The decision may come soon.

But perhaps I can take a last trip to Yellowstone, my favorite park. The bucket list didn’t tell me I needed to go to Yellowstone, but my remaining life is not limited to items on the BL: There is no prohibition against doing what I want to do just so long as I do what I need to do. However, peace of mind comes from resolving the needs, not the wants, so priorities are clear.

Monday, April 20, 2009



My tumor burden, as measured by the amount of cancer debris circulating in the blood, dropped from 79 to 33, or better than 58%, in one cycle of the brutal chemotherapy (DVD-R) I've been enduring. The wonderful thing about this drop is that it is definitive. Had the number been about the same, slightly higher or slightly lower, I could only say that the chemo was stabilizing me. But stability, as good as it is, isn't enough to get me to the second transplant.

But a drop of this size changes the probabilities. It is now likely that I'll respond well on the next cycle (which starts tomorrow). It has become at least possible that I will meet the goal of 10% or fewer plasma cells in the marrow and have that second transplant, maybe in five weeks.

I could have said neither of these two things were likely yesterday :)

Words fail me. My heart is soaring, and I must pause 'til it comes back to me.

Wednesday, April 15, 2009

Medical Marijuana

Cannabis Sativa

Many of the greatest gifts to the western world came from Mexico and points south: chocolate, Tequila, Mariachi music, maize (viz., corn), Tex-Mex food, potatoes, tobacco, and marijuana. All of them provide joy, every one of them is thoroughly and delightfully addictive, but only one is deadly, and the deadly one isn't the marijuana. (Well, you could count Tequila shooters as deadly, I suppose, if you tried to match me one-for-one.)

Marijuana, in addition to its recreational pleasures, is a godsend for chemotherapy patients and those who suffer from HIV-wasting or other diseases where nausea, vomiting, sleeplessness, and general lack of interest in eating are common. Marijuana greatly stimulates the appetite, giving the munchies to those who otherwise can't bring themselves to eat. It also reduces chemotherapeutic nausea, which is necessary if having the munchies is to do any good.

The medical claims for marijuana are growing for other conditions, but I'll leave their rehearsal to others. For me, it's enough that marijuana makes chemotherapy more bearable (see Occam's Razor). For those who want more information, this report of the AMA is dated but thorough.

In California, regulating marijuana may soon bring up to 1.3B much-needed dollars into state coffers, as discussed in the Washington Post. Eric Holder, the new Attorney General, has recently announced he and the dreaded Drug Enforcement Agency (DEA) will no long raid the store-front collectives ("dispensaries") that supply marijuana to patients. Thirteen states have legalized marijuana for medical purposes — so another of our long, dark wars is finally coming to an end. More on that, and what it might mean for poor Mexico, later.

The California ballot initiative that legalized medical marijuana has a serious flaw: it legalizes patient possession of marijuana without providing a legal way of obtaining it. You have to do business with the underworld to get it. Organized crime is involved on many levels, not just at the cash-for-crop dispensaries.

The attention of a state Medical Association scares the hell out of doctors. State MAs can make life a living hell for those who step out of line. In California, the medical association has decided to leave the decision to the doctor and patient concerning the medical use of marijuana. You can read their position here. On the other hand, not one of the dozen courageous doctors I see will write a "recommendation" for medical marijuana for me or for any of their other patients.

Therefore, yesterday I drove from San Diego to Dana Point to see a doctor who works in an outfit called Medical Marijuana of San Diego. There are similar, related facilities in Hawaii, Los Angeles, Santa Barbara and Dana Point (in Orange County). Now, this is only my opinion, and I may be wrong, but perhaps one look may suggest to you that they are supported by more than just the stream of youngsters with pasty, diseased skin who flood the waiting room with wads of $100 and medical records in their sweaty hands that suggest they have vague neurological disorders. I, insofar as I could tell, was the only truly ill person there.

What they do is accept and document patients, write recommendations for marijuana, and maintain a system whereby dispensaries can verify in real time that a patient has been examined, recommended, and documented. Oh, and you get a legally meaningless ID card that wouldn't impress a DEA agent for one second.

I left with a certificate (the card will come later in the mail), which you can see here, and was met in the parking lot by a thoroughly unrelated twenty-something girl with diseased, pasty skin who gave me a map to a nearby dispensary. The good folks at the clinic are not allowed to recommend dispensaries, or so the flamboyantly gay male nurse told me. The facility makes every effort to abide by a set of rules (the law) that allow them to operate without law-enforcement interference. No one involved is guilty of so much as a parking ticket, and the California Medical Association can't find fault either, much as they would like to.

Afterward I took a long, hot shower to wash off the dirty feeling I get when I think I've had something to do with vice. This despite the gratitude I have that at least someone is making an effort to address the supply-side problem.

There is an alternative, the officially equivalent drug, Marinol, which contains synthesized THC (tetrahydrocannabinol), the so-called "active" ingredient in the natural, organic plant. The Drug Enforcement Agency wants you to use Marinol. Here's a link to their propaganda.

There are many problems with Marinol, not the least of which is that it's a pill you have to swallow. Imagine, if you will, a chemo patient who can't keep food down: how does he keep a pill down? Smoked (or vaporized) marijuana doesn't have that problem.

Also, Marinol is subject to the vagaries of the digestive system. How soon it starts to work as well as its peak serum concentration depends in part upon whether the GI tract is empty or heavy with Chicago pizza. From my experience, the pill can take from ninety minutes to two hours to work and the effectiveness of the same dose can vary from barely noticeable to intense.

A good, useful drug would not behave in this way.

Smoked marijuana, on the other hand, is rapidly effective, which is hardly an insignificant benefit to someone closely examining the toilet bowl. Because the smoker can feel the effects almost immediately, the dose/effect can be easily controlled. No overdosing or underdosing.

Logic is a wonder made even more glorious by its lack of use. Marijuana is at the moment classified as a Schedule I drug, meaning, it has a high potential for abuse (whatever that is) and no medical use (a false assertion). Yet how can synthetic marijuana have a medical use but marijuana itself have none? Also, the government, in its wisdom, created Marinol so that they could claim to have provided an adequate, legal, and readily-available substitute, but has also put it on Schedule III, making it both difficult to get and expensive. Many insurance companies refuse to cover it, including Medicare. Lack of logic seems not to trouble our drug warriors.

I was in Tijuana a few weeks ago (The Happiest Place on Earth), one of the foci of the drug war currently being waged between the various cartels over control of drug distribution, mostly marijuana, to Americans. There were no bodies piled up on the main street, the Avenida de Revolution. There were no tourists, either, except for me. Between the recession and the fear of getting involved in the drug war (only rarely and by accident has the mayhem in Mexico involved innocent civilians), the safest street in Tijuana was deserted. I got a lot of unwanted attention. (Hey Mister....)

Here's what rankles. Mexico is tearing itself apart in a war that is entirely our fault. Mexicans are killing each other for the right to distribute marijuana to their major client, your average American citizen. They weild assault weapons bought mainly in three border states, then trucked to Mexico. The marijuana trade is enormous, in the many billions of dollars annually. See this article in the New York Times. Recently, the violence has spilled over into the US as well.

So we build walls and double the guards, as if the problem were there instead of here. We hammer the supply side and do nothing to reduce demand. Only recently, when Secretary Clinton spoke in Mexico, have we acknowledged that we are fueling this deadly, paranoid, loony war.

Well, not exactly nothing. California once again seems to be leading the nation, not from an excess of compassion, but because it needs the tax revenue. California is looking for a way to fix the flaw the medical marijuana law so that there is a safe, legal, and taxable way to obtain what is safe and legal for patients to use. Marijuana is the biggest cash crop in California. If you thought it was still oranges, see CNBC.

In my opinion, I think we owe it to those we have wronged (the Mexicans and countless of our fellow citizens rotting in jail for non-violent drug offenses) to declare victory and end the War on Drugs. Supply-side interdiction operations (not to mention supply-side economics) have done nothing but raise the cost in dollars and lives on both sides of the border. Punishing and interdicting has been about as successful as Cuchulain fighting the sea.

Instead, we should acknowledge that there can be no supply without demand and decriminalize marijuana, either permitting its use like we do alcohol (that is, with regulation and taxation), or declaring it to be a proper medical drug and stocking our pharmacies accordingly. Either way, our war ends, Mexico's cartels go back to distilling Tequila, those of us who can benefit from marijuana can safely obtain it, and we can relinquish the comforting but neurotic notion that this mess is somehow someone else's fault.

Tuesday, April 14, 2009

More on Tomatoes and Tests

This week is my holiday from chemotherapy. DVD-R amounts to four horrible infusions over two weeks plus a pill every night (Revlimid), followed by a week to recover.

So I went to the lab today. It may have been too early. But the light-chain test will produce a result that is either higher than when I started, lower than when I started, or about the same. If it's about the same, then we test later on. If it's lower, I read delight into it. If it's higher, then, well, I'm not responding. Yet.

I'll have the test results Thursday or Friday.

What I did next was head to Walter Anderson's nursery, a company that's been selling plants in San Diego since 1928. I bought a lemon tree, a Mexican lime tree, and an orange tree. They go in the ground on Thursday. I also got a rather beautiful nematanthus "Dorothy" to hang from a beam near my piano. As it grows it will hang down nicely. Up close, it looks like goldfish are devouring the leaves.

Nematanthus "Dorothy" (Goldfish Plant)

If you've been following along, you'll know I'm down on hope that's not based on evidence. On the other hand, I plan to be around to eat of the fruit of these fine trees (they are already flowering: I got big ones). It is my intention to drink a barrel of Margaritas squeezed from the Mexican lime tree this summer, and another barrel every year after that.

I hope y'all will be able to join me; I make Margaritas with Oaxacan Mescal. :-)

Wednesday, April 8, 2009

The Honor Roll (and Video Games)

Yesterday, I finished restoring my computer. When I designed and built it, I wasn't trying to save a nickle: I was trying to build the fastest air-cooled machine on the planet. I lost track of what it has cost me over the years, possibly because I don't want to remember. An upgrade in December set me back about $3000. I don't want to admit dumping something like $10,000 without having a very, very good reason, which, at the moment, I'm sorely lacking. There is Dolby Digital 5.1 audio certified as THX by George Lucas, and a monitor to die for.

The only use I have for it is playing video games; you are likely to run into my alter ego, Rufina, in any number of massively-multiplayer online role-playing games (MMORPGs). At the moment, it's Lord of the Rings Online. All my serious work, though, is Mac based.

I also used to maintain a list of the names of those who died fighting multiple myeloma; I called it the Honor Roll. The data is simple: name, next of kin, relationship, date of birth, date of death, date of diagnosis. The process of maintaining it is not.

Your mission, should you decide to accept it, Mr. Phelps, is to guess how the one topic relates to the other.

A hint: I haven't updated the Honor Roll in about two years. I feel guilty about my neglect, because so many of the survivors appreciate the Roll. Myeloma has its Little Arlington, although shabby, full of weeds, and not so grand at the moment.

Give up?

In my former life I was a Knowledge Engineer/System Designer/Programmer/Senior Scientist. I loved to program computers. There is no better exercise for the brain, nothing, that more wonderfully concentrates the mind (except maybe an outraged husband with a gun). In graduate school I learned to program in assembler for supercomputers, fell in love with an obscure programming language called SNOBOL4, and proceeded to make a specialty of programming in FORTRAN as if it were SNOBOL or LISP. Good code is so terse, so stripped of BS, it's like the essence of a poem. Getting it there is the best, most rigorous editing job in the world.

So when I set up the Honor Roll, naturally I figured out how to automate it. The information is in a relational data base, from which I extract a text file equivalent which is then fed into a — wait for it — SNOBOL4 program that regularizes and error checks all of the entries, then produces a finished web page which I then upload.

Eventually, I'll publish the statistics from the data base. I hope they will be useful.

Two or three years back, though, Mac stop being delivered with the old OS 9, and, instead launched a new, magnificent operating system, OS X, which had, for my purposes, only one small flaw: it couldn't run SNOBOL. The critical piece of my automation just died right there before my eyes. What was I to do?

Well, the obvious answer is just to edit the web page manually. But once I do that, I have to acknowledge the permanent loss of the last piece of my career, which was my first piece, computer programming. I hate giving it up. Which I expect is a major reason, besides relapse, etc., why I let the Honor Roll go.

There is also the undeniable truth that regularly updating the Roll is not easy on my psyche. I do consider it a kind of spiritual therapy to do so, to keep me grounded. But it is neither an exercise nor a duty that I relish.

In case you haven't noticed, all of my posts are about acceptance. I preach with fundamentalist zeal about the importance of accepting truth, regardless of how unwelcome, in order to fight cancer effectively. Well, in this case, I just wanted to pretend that I still had an important piece of me that I have in fact lost. I was being childish. I apologize.

Shortly, when the DVD-R decides to let me, I plan to resume maintaining the Honor Roll page. Eventually it will be up-to-date. I'll feel bad about the people that I could have had listed and didn't, but at least I'll be back doing a service that helps many of the survivors accept their loss.

Thursday, April 2, 2009

Planting Tomatoes

I just finished planting this year's tomato garden, a labor of love I do every year if I possibly can. This year was harder than previous years because of the relapse and the chemo, but I managed anyway. What I'd like to do now is repeat a post I wrote a while ago for ACOR's myeloma list because planting is such a positive thing to do (a statement that I intend to be around to enjoy the fruit). The photo was taken today :)

I think every boy is a born hydrologist. Even advancing age can't rob of us of the pleasure of peeing on a tree somewhere. After prepping my tiny garden, I found myself a comfy chair in partial shade and a six-pac of good Mexican beer (Corona), hooked up my garden hose, and did the fun part of preparing the bed: leveling the dirt.

I had finished tilling the soil (I really love my tiny Honda roto-tiller) in my 12x16 tomato garden, amending it as I went along with sacks of manure and compost (the soil in SoCAL is hard clay and rocks--amending it every year, though, has created a tiny plot so lush that I swear if you stuck your finger in it your ears would sprout — even if you aren't old enough for that to come naturally.

Then I take the hose and a high-pressure stream, sit in my chair with a Corona, and level the dirt. I take loving care in breaking up the big clods and attacking the slight rises until the entire plot is covered with water and no land is visible. Just like the Flood in Genesis. I played G-d today.

Tomorrow, the tomatoes go in. I add phosphorous to the hole, then plant them with about three inches of stem horizontal under ground level because the stems sprout roots and the plant grows faster. I'll plant some early maturing varieties first, then plant a few more every month to stretch out the harvest.

Sitting there, sipping the beer (which is a godsend, because the transplant, in lowering my saliva, made my mouth desert-like with hard work), enjoying the sunlight in the 78 degree weather, I reminded myself that one of the best ways of coping with this awful disease is to release my inner existentialist and simply enjoy the warm sun, the hosing of the dirt, the hummingbirds that came by to see what was going on, the slight breezes in my walled-in back yard, and the wonder of my continued existence. Time disappeared from my radar. I was in no hurry at all as I, like every grown-up boy, hosed down my plot.

Now I need to clean myself off in the steam bath and take a nap. I'm certainly tipsy in that wonderful way that only beer during hard outdoor work can give a man. I think for the first time this week I'm pleased with the world and myself (I've been on a tear — irritable as hell for days), and just felt like sharing the moment with y'all.

— Be well!