A Stunning Gift!

A veritable miracle has shattered my unshakable disbelief in the supernatural. My doubts are having doubts. I swoon in the confusion that generally precedes true enlightenment.Imagine, if you will, that first romantic dinner, the candlelight and soft music, European waiters dressed in tuxedos, maybe with a strolling violinist pretending to be Fritz Kreisler. There are fancy drinks to loosen things up. Quiet laughter interrupting serious exchanges. Eyes staring into widening eyes. Your partner-to-be is growing more attractive by the minute (or the drink). Everything is going well, or so it seems. Body parts are twitching.Then the point is reached where someone like me has to say, I hope this won’t make any difference, but I have an incurable, universally-fatal cancer. I'm not sure I'll be here next year.[thud]Add to that, although I don’t look particularly ill, I’m currently recovering from a spinal compression fracture and spend way too much time recuperating in front of the TV or seeing doctors.

I would have summed up my romantic future in a single word: hopeless. I'm not exactly every woman's dream date, am I!I was diagnosed nearly eleven years ago and have lived alone all that time, which has not been my preference. For a couple of years I had a married mistress, which kept me sane, but no real girlfriend. You could count the number of times I shared my bed at night on the fingers of one hand. Talk about being touch deprived!

I deeply regret the effort I made over those years to reconcile with my former wife because I wasn't whole-heartedly available to anyone else. If I add my heartless children to the mix—ta-da!—I seem destined to die alone.

Except it hasn’t turned out that way. Love has come to Lonnie, whacking me in the back of the head when I wasn't looking. Meet Ivonne. We had been friends for about a year before she volunteered to help me get through the bone marrow transplant that didn't happen in February and, wondrously, decided to stay anyway.

The relationship is impossible. She is thirty-two and I'm sixty-four. She's a Mexican national living in Tijuana. Neither of us is fluent in the language of the other. There are huge cultural differences, educational differences, class differences, a massive power imbalance, and four children who range from something like eleven to fourteen. She is Catholic, I am secular Jewish. I'm weak from fighting the cancer and she's vibrant, funny, and thoroughly healthy.And, yet, it works. Both of us say, at least once a day, "Impossible!" And, then, "We'll make it work." After a spirited debate, we decided that she gets to be Cinderella (although I was a strong contender).

In the midst of a stubborn relapse, with the pain and misery of chemotherapy plus the unbearable uncertainty of the future, I find myself to be ridiculously happy. Because of all our differences, everything that once was routine is now an adventure. I remember that in high school they were selling foreign languages as the key to fascinating foreign cultures. So I was unproductively drilled in Spanish, French, German, and Latin, I enjoyed travel where I could butcher the local language, but I never experienced the excitement and fun of cross-cultural exploration until now. I am discovering how another culture thinks about what I fatuously take for granted. How liberating! How unnerving!I even begin to understand border Spanish, although it seems to be a language composed entirely of idioms.

My gray hair hurts.I have been given a great gift. Love has come to rejuvenate me, giving me joy and hope when most needed and least expected. With the exception of my inviolate morning coffee and bagel, the dreary but comfortable routines of my life have been demolished, replaced by something I had nearly forgotten over the years of solitary struggle and, before that, bad marriages: fun. Every living thing in my house is happier, including I. Even my pets (three cats and a bird) have responded, playing enthusiastically and continuously. Gone is the "been there, done that" jadedness that had descended on me like a pall: all things old are indeed new again. Laughter, no longer of the hysterical kind, fills the spaces of my life.I feel so very, very lucky. There will be more to this story.

Crawling out of the Last Ditch

Click on graph for a larger version.

I may be on this planet a while longer! Rationally, I knew last week's leveling off meant I was responding, but still my pulse was racing and my hands shaking as I tore open the envelope with the lab results. A drop in the key number from 132 to 85.5 is a wonderful thing to behold! Another thing I look for is how the curves fit together: notice that they are all trending downward (the B2M doesn't count because it wasn't measured earlier). When all the curves are heading the same way, that's confirmation. Hallelujah!

Tomorrow begins another cycle of bendamustine and dexamethasone. Maybe it won't be necessary to increase the dose, which would please me.

A wonderful thing about alkylating agent therapy, which has all but gone out of fashion except for the very old, is that, if it works well, the numbers can crash on their own a few weeks down the road even if therapy is abruptly halted.

Alkylating agents often produce remissions or plateaus. In remission, the numbers stay down without treatment for long periods of time, even years. In this case, considering my history, I have no idea what to expect. Assuming I reach complete remission — which is one hell of an assumption at this point — will we transplant right away, because we can, or will we wait until the first hint of progression, which could be far into the future?

As soon as I know, you'll know! :-)

Ten Father's Day Confessions

1. I wish I had learned to be more playful
2. I wish I had been less judgmental and more accepting
   
3. I wish my mom had understood boundaries so that I could have better respected yours
4. I wish I had never been too preoccupied to hug, too talky to listen, or too upset to reassure
   
5. I wish I had learned more from you
6. I wish I had sacrificed more and indulged myself less
7. I wish you hadn’t had to take sides
8. I wish we three had spent more time by ourselves
9. I wish for less certainty and more curiosity
10. I wish our time weren’t running out

A Little Bit of Good News!

Click above to open a larger version

The labs from Monday, 8 June 2009, or fourteen days after starting bendamustine infusions, contain a small but I think believable indication that I'm responding to it.

I've been waiting in a dark and dismal place with little rational hope for good news, anything that might postpone the End Game. Today I have it.

The deep red line on my chart above is a rough measurement of the number of cancerous cells in my bone marrow (i.e., the "tumor burden"). You can see that it has been exploding upwards since the first of May. Mathematicians call this an "exponential curve," because each new value is a more-or-less constant multiplier ( > 1 ) of the previous value. A number can get dangerously high very quickly on such a curve. The most dangerous tend to look like straight, vertical lines on a standard chart.

Bendamustine, which I am apparently pioneering for multiple myeloma around these parts, was begun on 26 May 2009. If it works, it will slow down that soaring red measurement, bending it to the right, and, hopefully soon, send it plunging downward.

What it did this time was level it off. Last week the number was 131—this week it is 132, slightly higher but, basically, the same number. Progression has been stopped.

If you were to ask me why I believe the number, I have an explanation. Sometimes, one must consider that a single data point can be an erroneous result. I especially think so when I see something like on the right, where the second value appears to have fallen off the curve. The following week, the value is back on the curve. Apparent anomalies like the low point on the right cause me to say to myself, I need to see another measurement.

But when the new point shows an increase, however negligible, in the tumor burdon, I see it as consistent and plausible with the past. A change in the direction of the curve always needs confirmation. I therefore see no anomaly in the math: I believe it. The curve has flattened. I am responding to the Bendamustine.

Of course, the past does not restrict the future; the curve could take off upwards again soon, and besides, what we need now is to see a DROP. But today I can say, without fear of self-delusion, that a future drop is likely.

Which is the little bit of good news I have so desperately been needing. Being rational about ones chances is not the same as being indifferent to the outcome :)

A Note to my Gentle Readers

Today I realized that I am assuming, when I write a post, that you, my Gentle Reader, has read all of the earlier posts from the beginning in January. For some posts, knowing the full corpus is prerequisite to full understanding, which is the point.

I could have attempted to write each post in a fully self-contained way, assuming nothing; however, when this blog began, it was intended to be an almost-daily diary of the experience of an autologous stem-cell transplant (aSCT). If you have been following along, then you know why it didn't turn out that way. For the newcomers, in a nutshell, I failed my last exam before transplant, the bone marrow biopsy, by having 60-70% plasma-cell infiltration of the marrow, which has led to a terrible and ongoing delay while we try to drive that number below a life-or-death 10%. As a result, the purpose of the blog has now expanded to cover the full experience of the battle and especially the End Game part of the battle, which may yet include a second aSCT if I'm lucky.

This blog is written for everyone fighting cancer but primarily for those of you who may experience an aSCT. If you know what it was like for me, you may find it less surprising and easier to bear. The only details I'm leaving out are some private conversations with my doctors and friends, lest they discover I've embarrassed them for all to see and decide to clam up. In the ideal world, there would never be negative consequences for truth telling: in this world, they poisoned Socrates just to shut him up.

The Death of Socrates

For now, Gentle Readers, I must beg your indulgence to ask you to go back to the first post and read it and the rest. I know that is a lot to ask, but necessary if I am to succeed in conveying the important parts of the End Game: if it turns out well, you can rejoice with me, but if ill, you will know how one man faced his end.

To help, I've temporary increased the number of posts displayed below to include all of them. I can't keep it that way for long because of the increased page load times it will cause.

I am Wimp: Hear Me Whinge!

Forgive me for, or rejoice in, the uncharacteristic brevity, but I'm full of dope (Ultram ER) and, by the time you read this, on the way to surgery. Today an eminent orthopedic surgeon (a friend of mine refers to him dismissively as a "mechanic") will perform kyphoplastic magic on the compression fracture of my second lumbar vertebra.

How Kyphoplasty is Done

I haven't been able to do much of anything for the last month because of the pain, so I am delighted to be a "good candidate" for the procedure. The surgery itself will take only an hour, but I'll be trapped in hospital for about five hours. With any luck, by the weekend I won't need pain meds and will be able to sit in chairs again. Chairs are especially important to me in that if I can't sit, I can't play piano, AND THAT DRIVES ME CRAZY! Music is my safety valve, or has been, until recently.

Wish me luck.

Weak in the Knees

I can't count the many times I've anxiously watched my fax machine grind out what I thought would be crucial labs. After years of psych training, I feel little fear until my blood is drawn: after that, anxiety grows daily, peaking with heart palpitations, anguish and mild panic as the maddeningly-slow fax machine prints the results. But once they are in my hands and plotted on my graphs, I calm down no matter what they tell me. "It's always better to know," I tell myself.

Not this time. I couldn't bring myself to make the necessary phone calls.

The stakes seemed to be so very high. The bone marrow biopsy, if an improvement over last time, might give the go-ahead for Transplant Two and a new lease on life, albeit temporary. If no improvement (or a worsening), the likely future would be clinical trials (which usually don't work) and a steadily diminishing quality of life until the painful, merciful death. It was more than I could handle.

So instead of my usual behavior, I decided to take Marinol, watch action DVDs, and let my transplant doc tell me the results the next day. In other words, for the first time since I was diagnosed in 1998, my knees buckled under pressure and I crumbled into a heap. I didn't want to know.

Plasma-cell Infiltrated Marrow (2% is normal)

From my lab report: Abnormal kappa light-chain-restricted plasmacytosis composing 50% of marrow cellularity and occupying 20% of the medullary space consistent with marrow involvement by multiple myeloma. These results represent drops from 60-70% cellularity and 40% in the involvement of the medullary space after two cycles of DVD-R.

Not good enough to go ahead with the second transplant, my doctor said, we aren't going to get to where we need to be on DVD-R. I'm thinking, cue the funeral dirge.

Then, doffing his magician's black hat, he extracted a rabbit: bendamustine. It is prescribed "off label" for myeloma in America, but has been used effectively in Germany and elsewhere. Although simply reading its probable side effects would relieve severe constipation in under ten minutes, it does have a reasonable probability of working. I start its first cycle next week.

I believe my experience to be universal: we expect the next lab test to be definitive, to reliably reveal the future and put an end to intolerable suspense; however, the satisfying revelation we need and expect seldom comes. In my case, the plan has changed but the uncertainty is undiminished. Every time I think I've crossed the goal line, I discover that it has been moved further back. Like Charlie Brown trying to kick the football, I fall for Lucy's trick every time.

One day the report will be definitive: there's nothing more we can do for you. Perhaps, after years of moving goalposts, air kicks and pratfalls, there will be a feeling of relief amid the fear and pain.

A Last Chance

I wish I had written three weeks ago about the Saturday I spent doing yard work but having just posted about planting my tomato garden, I spared you the story of cleaning the lily pond, drinking Mexican beer, re-potting palms and the like. I must say, though, I felt and worked like a man twenty years younger. It was a grand day.

The next day I noticed a slight backache, nothing particularly surprising or alarming. It didn't prevent me from revving up the motorcycle and tearing up the pavement on a pretty Sunday morning. I wasn't knee dragging around tight corners at idiotic speed, and I was wearing Kevlar-armored jeans and jacket, but, still, there's nothing like raw acceleration to redden a man's blood! The bike will do zero to sixty in something under five seconds (but not with a heavy old man on the seat).

Over the next week the ache slowly worsened. By the end of two weeks I was bravely trying to cope with heavy narcotic painkillers (Oxycontin 40, which is huge for me). Bravely, because I was constantly fighting the urge to regurgitate and giving up seemingly forever the functioning of my alimentary canal, including the pleasure of eating. I whined a lot, but at least I didn't hurt.

For reasons unclear and undoubtedly weird the pain diminished considerably on Monday, and by Tuesday I needed no narcotics, although it did take a long while to become fully uncorked. Some subsequent days have been easy, some more difficult. Yesterday was a bear, but no worse than half a Vicodin kind of bear.

Apparently, there is a pathological crack or something like a crack at the left attachment point of the sacrum to the ilium (no, nothing to do with Ilium of Helen of Troy, although how she threw around her backside figured prominently in Homer's epic). An MRI next Wednesday might tell us what the hell happened and what, other than another transplant, needs to be done about it.

Speaking of torture, which is a fashionable subject these days, Friday I endured another bone marrow biopsy, this one a tad more gruesome than most. An instrument like the one at the right drilled through my pelvis like a German whacking down the Berlin Wall — the doctor might as well have been using a sledge hammer. There was a lot of drilling (his) and cursing (mine) involved. Particularly awful was the final step, the sucking out of a deep sample of the marrow. I wonder if biting down on a leather thong or a big lead bullet would actually help.

With luck the results will be encouraging, so there may be a chance that a second transplant will begin as soon as next week. You might recall that the biopsy of February 24 resulted in a surprising 60-70% plasma-cell infiltration of the marrow (2% or less is normal). That stopped the first attempt at Transplant Two. Now, after two cycles of brutal chemo (DVD-R), my future (that is, whether or not I have one) depends upon seeing a significant reduction in that percentage.

This blog has become rather more far-ranging than I had originally intended, mostly because of the indefinite postponement of the February autologous stem-cell transplant. The original purpose of this blog, as stated under its title above and in the first post of last January, was to produce a more-or-less daily chronicle the events of the transplant. Many begin with the intention of doing a similar thing, but few are able to keep it up — it just becomes too hard. I am resolved to succeed even though it will be a repeat transplant and likely to be missing much of the surprise and horror of the first — at least I hope so.

In the event that there is no second transplant, then I'll continue with whatever we do next (probably clinical trials) until I'm no longer able to do so. One way or another, I hope the result will be a valuable record.

Not Responding!

A month ago I saw my response to the first cycle of DVD-R (Doxil, Velcade, Dexamethasone, and Revlimid) as positive and definitive. Kappa, which for my type of multiple myeloma estimates the overall tumor burden, had dropped by more than half in just three weeks. Such a strongly positive response to the first cycle suggested that future cycles would also produce good responses, at least in the short term; therefore, a successful end-game-delaying second bone marrow transplant had become a likely option! My surprise and delight were unambiguous.

But I was wrong.

Today, at the end of the second cycle, my kappa measurement is devastatingly unchanged from the first cycle (actually, it rose slightly, from 33.2 to 36.5). DVD-R might still be annoying the cancer but is no longer reducing it. This week there will be another bone marrow biopsy, but I don't expect it to meet the original goal of less than 10% plasma cell infiltration of the marrow. Had that goal been met, the prognosis for a second transplant would have been good. Now it is uncertain at best.

You'd think that with my track record I would refrain from making predictions altogether, but the one thing that is clear is that I've been whip-sawed back into limbo. Although the major problem with stem-cell transplants for multiple myeloma is that they aren't curative, the inability to reliably predict the benefit of the procedure to any given individual is a close second. Soon I may have to decide whether to undergo for a second time what has been called "the most punishing procedure in all of medicine" without the assurance that the benefit will outweigh the agony.

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.

Responding!

Yay!

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.

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.

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. :-)

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.

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!

Let the Games Begin!

Today I started the first cycle of DVD-R, which consists of infusions of Doxil, Velcade and dexamethasone, followed later in the evening by Revlimid. Nine hours have passed since the infusions began, and in an hour I must swallow the Revlimid, which I hate (I'm not too fond of Velcade, either; Doxil I've avoided until now because it causes permanent heart damage and is otherwise nasty). Already I can assure you that this chemotherapy is every bit as brutal as I feared it would be (see dex's nastiness).

In each twenty-one day cycle, infusions are given twice a week for two weeks. Revlimid, in capsule form, is taken nightly for fourteen days starting on the day of the first infusion. The third week is a holiday to allow for recovery before starting a new cycle. The holiday can be extended if the lab tests show inadequate recovery. Or if, as in my case, the patient whines a lot.

What makes enduring DVD-R so difficult emotionally is that I don't believe it will work well enough to make the second transplant worthwhile, well enough to postpone my having to play in the End Game. I have already failed Revlimid as a single agent, and my response to Velcade (with Cytoxan in a modified version of a regimen known amazingly as CYBOR-D), although good, was inadequate as a pre-transplant chemotherapy. Even dex, our most reliable, effective weapon, has recently shown signs of weakening, which is one of our worst general prognostic indicators.

Despite the lack of supporting science, I nevertheless have hope (not faith) that after the first cycle I will be surprised by a strong, positive response — getting such an unlikely response is, after all, the point of the attempt — making subsequent cycles easier to bear. I'm not by nature a gambler, but I understand that it helps to feel lucky when playing against long odds....

You know you're in the End Game when your best course of action's chance of succeeding is less than fifty-fifty.

Clinical Trials and the End Game

Clinical trials of new treatments are of the utmost importance. Without them, doctors would still be bleeding us for the ague. A proper clinical trial provides a bit of unshakable truth in the struggle against cancer. Participation in clinical trials is often presented to the newly diagnosed as if it were a routine or natural thing to do. There are even those who will suggest that there is a duty to science or humanity to be part of a process that might lead to cures for presently fatal diseases.

If Christopher Columbus had said, “Oh, I don't think I will try to discover a New World because the voyage will be dangerous and we may not make it,” he never would have had a day named after him!!!!!!!!!

— A fellow myeloma patient

Is having a day named after you worth your untimely death? I strongly recommend that most patients stay the hell away from clinical trials.

I believe that volunteers in the best sense of the word participate in clinical trials as a way of doing good. While I admire the motive, I think they are nuts to do it. Let some other, more desperate person take the pill and the associated risk. It isn't the patient's job to advance the cause of medical research; his job is to fight his own cancer as effectively and courageously as he can.

"No bastard ever won a war by dying for his country. He won it by making the other poor dumb bastard die for his country.”

— Attributed to General George Patton

If someone is in reasonable physical shape, has recently been diagnosed or is responding to routine first-line therapies, and, therefore, the disease is not progressing out of control, then one doesn't actually need to participate in clinical trials and, therefore, shouldn’t.

You may have read of a relatively-recent clinical trial of a genetic-level cure that in a matter of minutes destroyed the livers of the participants, a problem that did not show up in animal testing. I personally had a friend who, although an excellent candidate for a conventional transplant (listen to me call the most punishing procedure in all of medicine “conventional”), saw the seductive promise of cure in a trial of Holmium-16.

The idea was that a small dose of Holmium, a naturally-radioactive substance, would home in on the marrow, help Melphalan kill the old marrow by radiation, and then be flushed from the body in less than an hour, making it harmless. If transplants failed because of incomplete marrow ablation, with Holmium there was the promise of cure. Cure, so achingly seductive, so necessary!

She died a few months later. Actually, her bones died first from the “small” dose radiation. As someone who has studied delayed radiation in Hiroshima and Nagasaki, I should have remembered that there is no established dose of such substances low enough to be considered safe. I too was blinded by the promise of cure. I encouraged her. I feel guilty about doing so to this day; she might otherwise still be alive. I am.

Yet there is a time to consider participation in clinical trials. For me it came with the End Game milestone. Participation makes sense when you are clinically desperate. If a patient has relapsed after responding to one of our usually-reliable therapies or become refractory (failed on more than one) or is demonstrably belongs to a very high risk category—and the remaining choices are unlikely to stabilize the disease for any meaningful length of time—then looking for a promising clinical trial is better than looking for a hospice.

The downside of this high-level of prudence is that many early clinical trials only accept volunteers who are recently diagnosed and/or previously untreated. Therefore many that seem promising will not be open. However, new treatments seldom come from these early clinical trials. There are always more advanced trials, where the risks and benefits are better known, and others designated for the relapsed/refractory category (or are open to all). Here is a link to the national data base of clinical trials.

In my opinion, fear (or its more handsome twin, hope) is the biggest risk to us, whether we are among the newly diagnosed or the veterans. With a handful of exceptions, multiple myeloma is incurable and universally fatal. This fact cannot be wished away. Fear of death can drive us toward any promise of escape, however foolish: inadvisable gambles seem attractive; denial stops decision making because there is no need for it; fortunes are spent on "alternative" treatments; the good in present life is degraded by obsessing on the future bad. This blog is indirectly devoted to providing tools to help neutralize anxiety, regardless of the kind of cancer you may be fighting, so it never drives or degrades treatment decisions. All of my big medical mistakes have stemmed from yielding, consciously or unconsciously, to fear.

The End Game

I reached a significant milestone in November. I am now officially at the beginning of the so-called End Game. The term comes from chess, where every match is somewhat loosely divided into three phases: a formal opening game where initial sequences of moves (called "openings") have well-recognized names and can be found in books; a development section, where the objective is to gain every possible advantage (positionally, strength, and number); and the end game, where the King is won or lost.

My plan was has been for a decade to have a second autologous stem-cell transplant (aSCT) at time of progression after my first transplant (which was in September of 2005). The second aSCT would buy me some additional good time. I have cells harvested in 1998 just waiting for it.

In February, after six or seven months of Velcade, I was good to go. Except that the bone marrow biopsy revealed between sixty and seventy percent plasma cell infiltration of the marrow (normal is two percent).

At that moment I entered the End Game. The cancer, although not damaging to me at the moment, is progressing, resistant to some degree to every chemotherapy we've tried (e.g., Velcade, Revlimid, Cytoxan, Thalidomide), and, by some tests, is showing a higher-than-comfortable level of activity.

Not my arm, just an example

I know I'm not being physically damaged at the moment because a recent CT-Pet scan revealed evidence of healing in all the spots where the cancer was previously active except one on the seventh thoracic vertebra, and the activity there was no higher than it was on a previous scan in 2007. For those of you who are unfamiliar with multiple myeloma, the cancer eats marrow-laden bone from the inside out (e.g., pelvis, skull, spine, ribs) as it destroys the ability to resist disease.

The difference between the End Game and what comes before it is that the unpredictability of the future is greatly reduced. The cancer will progress at some point on the minimal treatment I'm now giving it (high-dose steroids on two consecutive days each week), and when it does progress it will be difficult or impossible to stop. Imagine a Champagne bottle with a part-way extracted cork and a snarling demon shaking the bottle! That's what I'm seeing today.

If I go ahead with the aSCT with my present level of plasma cell infiltration, there's a good probability that I wont benefit enough from it to balance out the agony of the procedure itself and the lengthy convalescence from it. Looked at from a quality-of-life (QOL) remaining point-of-view, my QOL might actually be reduced when comparison to what it might have been had I skipped the second aSCT, and my remaining life from today (they call that OS, or "overall survivability") might actually be the same or shorter. So instead of enjoying months of relatively good time before the final fight begins in earnest (when you'll start seeing the words "end-stage" or "terminal" on this blog), I would have suffered more than was necessary or beneficial.

When the cork does fly out of the bottle, I'll have little or nothing to hold it back. I don't think anyone can make reliable predictions, but if I had to guess, I'd say that the cancer will blast past the steroids I'm presently taking by the end of summer and that I'll survive about six months after that.

So we're going to try again for the second aSCT. That means, essentially, throwing the kitchen sink at the cancer in a last-ditch attempt to get the plasma cell infiltration down to an acceptable level (less than ten percent). The chemo will be brutal, probably involving a combination of Velcade, Revlimid, Doxil, and Dexamethasone, but if successful any damage or pain caused will be reversible and I'll gladly forget all about it.

Having a successful second aSCT will pull me back from the End Game for some length of time, probably for at least two more years. During that time I might be able to live a relatively normal, mostly drug-free life.

There would also be a reason to hope. There are no new drugs I am aware of that will become generally available in the next year or two, so without the aSCT, when the cork flies out I'll have nothing with which to fight but the drugs that have already failed. On the other hand, in two or more years there may be new treatments that could keep me going, or even enable me to have a third aSCT.

My Bucket List

My Bucket List

I never saw the movie, but I understand a bucket list to be a list of things to do before one dies (that is, “kicks the bucket”). I’m in fairly good physical shape at the moment, when you consider that I’ve been fighting an incurable cancer for more than a decade. Although I’m not in immediate danger, off in the distance, barely visible through the haze, I can see it coming.

When I was diagnosed in 1998, my prognosis—How long have I got, Doc?—was about three years with conventional chemotherapy, five with a stem-cell transplant. Thus far I have lived more than twice as long as that, which I believe to be the result of a combination of out-of-the-box thinking and plain good luck.

Now, though, with my cancer having become difficult to treat, a second transplant nearby but dangling maddeningly out of reach, and seeing no clear path ahead, I’ve started working on my bucket list.

There’s not a lot on it, but reconciliation with my children certainly comes first. I have a son and a daughter, now forty and thirty-six, whom I have not seen in decades; much of the time, I didn’t even know where they were. There has never been any attempt to contact me. My every attempt to contact them has up to now been met with silence or worse.

According to your responses to my posts thus far, I may have led you to believe me to be rational in the face of adversity. Now I have to write about a subject that is harder for me to think clearly about than even the cancer. Because of the history and sensitivity, some irrationality will undoubtedly slip through. I apologize.

I have no good explanation for why I married back in 1968 except that for the first time I was entirely on my own; graduating from “mother Yale” to the chaos of UC Berkeley was a scale-nine seismic shock. I imagined that if I had died suddenly under Sather Gate...

...I would have been stepped over or around until the stench forced the groundsmen to toss me in a dumpster. I think I married because I didn’t have the maturity to handle the world’s indifference.

It’s not just that we were merely temperamentally ill suited, or that she came from a traditional Southern family (boy, was I ever a damned Yankee), or even that we shared the maturity and personal qualities of a yearling alligator. There was something deeper; many of her more emphatic feelings I simply could not understand and still can’t.

I have to say that what I am going to tell you now is just my opinion. I make no claim to authority here, especially when edging close to describing behavior or character that another might consider pathological. Recent events have been difficult, but I bear malice toward no one. (My legal team has made these facts unmistakably clear to me.)

I felt a kind of irrational darkness in my wife that I could not understand; the inner fires seemed a touch hotter and less explicable than those of simple neurosis. Now, neurosis is a subject I know first hand, having withstood sixteen years of analysis. (Yes, I'm bragging: who among you can lay claim to have been psychoanalyzed!) Eventually, I developed a self-observing ego that could sense inappropriate emotion stemming from the the confusion of present circumstances with childhood trauma. What I saw in my wife was not what I recognized as neurosis.

I am reminded of the poetry of William Blake in his old age, if you’ve ever tried to get your mind around it! The problem is empathizing with the emotion or affect in the poems. Can you put yourself in the shoes of the poet? See how well you can manage. If you get a sense of what he's writing about, you might consider getting an English degree. Academia needs you.

I’m not going to rehearse the eerier events in our relationship, just to mention that it was somewhere between difficult and impossible to carve out a safe place for the children. I’ve forgotten what the Final Order of Visitation actually cost me (I would publish it here were it not in paper form), but, in the end, it was some sixty-five pages in length, covering absolutely every eventuality; for all I know it may well be the longest and most complex visitation order in the history of California divorce courts. As a result, for a while, I was able to get my kids out of the middle, at least with respect to visitation.

During the whole of their minority, I never missed a single visit except when on business travel. I was seldom or never late in fetching them. Also, and for the same reason, I paid every cent of my alimony and child support—I didn’t want my children to wonder for one second whether something else in my life was more important to me than they were. There wasn’t.

On the other hand, I felt as if all of the special powers of motherhood were making it as difficult as possible for them to have a normal relationship with me. I tried to be scrupulous at all times; I acknowledge that there were times when my halo slipped. In any case, the need to be scrupulous was not reciprocated. It was all-out war.

Here’s how it worked out. Because I had the court order in place, my children could always say to their mother, or even to themselves, “I’m going to visit my father, not because I love him, but because the court order says I have to.” The day they turned eighteen they could no longer hide behind the order. They would have had to reply, “I want to.” That was an option they were not allowed.

As a result, I never saw them again. I feared that they were broken like horses to the saddle.

Still, I remember when it was obvious that they loved me very much.

My beautiful son and I had the kind of special father-and-son relationship every dad hopes for, at least until he neared eighteen. I love remembering the tobacco-chewing contest (we chewed to a draw, which surprised me), teaching him to ride a bike, eating a poison plant on a dare from his step-brother, and any number of private jokes (Cujo—eats big, ....). He was a contented lad, popular with his friends, thoughtful and funny. First in his class in a huge high school.

I was more worried about my daughter. From an early age she seemed to lack empathy and the compassion that stems from it. My second wife and I talked about this often in quiet tones. Perhaps chemo has rotted my brain, but I cannot to this day remember a single instance in which my daughter tried to comfort someone else (I have many fond memories of compassionate behavior in my son). On the rare occasion of tears, I thought I saw a bit of crocodile in them. There was much of the macabre in her tastes. I'm not sure it was an act.

The reasons for making contact with them after all these years are of course complicated, but, at bottom, I did not want to die without giving them the opportunity to make peace. Once I'm gone, they will be stuck for life with two things: their childish understanding of the relationship between me and their mother; moreover, they chose not to make peace when they had the chance. Both would hurt them permanently.

For my benefit, I wanted to know this: did my children thrive despite the pressure that was put on them? Were they mentally healthy, had they formed normal personal and intimate relationships, were they well adjusted, independent, progressing in their careers and pursuing reasonable goals by reasonable means? In short, were they happy? Or did the pressure they were put under during the marriage and divorce scar them indelibly?

I certainly hoped they were doing well, although their long silence argued otherwise. Two weeks ago, returning from a devastating meeting with my hematologist, I decided to just simply drop in on my daughter at work; all this time she’s lived right here in town. I’m not going to go into detail about that meeting, except that, on the surface, it went reasonably well. Later she told me that she had “freaked out” afterwords, so much so that the company visiting rules were changed. I hope she didn’t raise eyebrows enough to hurt her standing with the company or to damage the woman who escorted me. Nothing overtly happened that should have raised alarms. For her own sake, she should have finessed her distress and simply gone home.

Nevertheless, in the last few moments, I sensed some some hope for reconciliation. I imagined I saw an aura. Yet after two weeks of unanswered emails, with me growing increasing alarmed that my ice-breaking visit had not resulted in broken ice, but also might be providing her a degree of passive-aggressive pleasure, I tried again.

This week, Sunday, I rang my daughter’s doorbell, hoping, at least, for civility. Unfortunately for all of us, what I found seemed neither civil nor normal.

How was the desperate and desperately ill father greeted when the door opened? The first word out of her mouth was “Noooo!” Then, emphatically, percussively, conclusively, and in a guttural, almost feral tone: “No." Pause. "NO!”

I sensed neither empathy, nor compassion, nor even respect—just a dark, intense rage. She began to recite a litany of my recent sins, during which it became apparent that nothing I have said or done has been inoffensive to her. If I emailed her some of the kind words others have said about me, I was being “self-aggrandizing.” (Had I sent her criticism, it wouldn’t have been critical enough.) She was angry that I had found her, and angry that I had not found her earlier. She had forgotten that after an "Oh boy," she hung up on me during an early attempt at conversation. There is much she has repressed.

I asked what I had done that was so unforgivable. She replied, digging back two decades or more, “You said bad things about my mother.” That was it. I wasn’t seeing her rage, but her mother’s rage, by proxy. Some psychologists might call this “identification with the aggressor.” If this is what I was seeing, and this is only my opinion, the identification seems to be complete. My darling daughter is gone. I have been disconsolate ever since.

However, I was wonderfully surprised and delighted to meet her long-term companion, who I found to be decent, friendly, and principled; he showed solid character three times while we talked. The moment he saw me he rushed out of the house to shake my hand. When that didn’t seem enough for him, he gave me a hearty hug. He said this meeting had been too long in coming. When my daughter left the door to finish dressing (she had refused to ask me inside), I realized that he had been told absolutely nothing about recent events, even to the point of being completely unaware of my battle with cancer. He was sincerely shocked to learn of my condition and tried to give me hope for survival. I told him that meeting him was on my bucket list, and that I was delighted to be able to check that item off the list.

I did like him a lot. I told her when she returned that I could see why she liked him. He suggested meeting over beer. We agreed on a bar called Callahan's the Wednesday following.

"The Earth is firmly fixed; it shall not be moved."

-Psalms 104:5

This bible verse shackled the minds of men for thousands of years, and held back the advance of science. It was this verse that was used as evidence against Galileo, who argued for the theory of Copernicus, that the earth is not immovable, but rotates around the sun. It was for teaching this that he was called to Rome in 1633, and tried for the crime of heresy. The aged Galileo, in his 70's, was taken down into the dungeons of the church and shown the instruments of torture that were going to be used on him if he did not recant. Fearing the torture, and fearing that he might share the fate of Giordano Bruno, whom the church burned at the stake a generation earlier for the same crime, Galileo recanted the truth. He was confined to his home under house arrest, neither allowed to leave or to receive visitors, for the last seven years of his life.

Afterward, I fear my daughter had shown him, like Galileo, the instruments of torture. Or maybe her mother had brandished her extensive collection to everyone in the tribe. In any case, the beer was called off. And that was it. Instead I got a pedestrian text message listing each of the individual ways I was to avoid future contact. I’d wager the entire sorry tribe participated in its production. I give the companion little credit in its writing; I still think he's a right guy. I wanted to learn about him, his parents and his childhood and the like, and I am disappointed. Here is part of the text message I received on Tuesday, slightly altered:

1. Your daughter would prefer you not to come by the house anymore.
2. She also requested that you not come by work either.
3. Your son has also asked that you not contact him or his wife
4. Please do not ask emissaries to intervene on your behalf with any of us
5. Do not employ semaphores, mirrors, or other devices in an attempt to call attention to yourself
6. Please do not ask anyone to inform us when you have died
7. Please do not contact me any further.

Ok, so I made up three of the responses, but you must admit, the others are rather strange. Of what are they so deathly afraid? Why can't my son tell me what is on his mind face-to-face like a grown man? In what possible universe do I constitute a risk? Did neither of my children inherit my courage or decency?

Perhaps it is harder to be courageous or tow your own line when at age thirty-six you live in a house you rent from your mother (who, by the way, lives about a mile away). But I'm just guessing here.

When first diagnosed, I stumbled across words that were enormously difficult to accept: that multiple myeloma is an “incurable, universally-fatal cancer.” Yet, in accepting these unthinkable words, I was given the gift of clarity. Those who hide from or try to deny such hard truths find it more difficult to enjoy the good time that remains. Denial takes a lot of energy. Like a cancer, it spreads to cover all manner of other thoughts that might lead to the big, unacceptable conclusion. Quality of life is diminished. Moreover, the work of accepting and being prepared for the likely future isn’t done.

Which by their denial, ironically, is the fate to which my son and daughter have consigned themselves.

So I accept that my daughter does not love me and admit that I’m not sure she ever did. (My son did love me, of that I am sure.) I also confess to being more disappointed in them both than I ever imagined possible. Thus far, I have seen nothing to admire in either one. That may be harsh, but it's true.

Wonderfully, after a few difficult, lost days, this morning I can write again, which is my path to understanding. The guilt I felt toward my minor part in breaking my daughter is gone. In a surprising and unintended way, I received the absolution I needed from her, albeit in a terrible form. Although she is lost to me and perhaps to herself, today I can absorb her coldness and that of the world, which I could not handle in 1968, and move on. Cancer is a great and terrible teacher. Or as my Chairman of Computer Science once told me, he who matures last, matures most.

It is time to move on to the next item on the list. Perhaps it is my son, although persuading him to come out of hiding might require an extraordinary legal action.

Labels: acceptance, bucket list, clarity, courage, denial