And Then The Roof Fell In

If you look out my bedroom window a few hundred yards to the west, you will see a big chunk of the Blue Pacific over the heads of the dazzled Torrey Pines golfers. At Scripps Green Hospital, I'd rather have a room overlooking the main parking lot because the Internet signal is so much better on the land side of the hospital than on the water side, but, then, I never claimed to have a balanced set of priorities.

I've been trapped in these lovely surroundings since last Friday by bedeviling low-level fevers whose cause originally was thought to be an activated cytomegalovirus (CMV), which indeed, I seem to have. However, after much testing, the fevers turned out to be sneak attacks from a sneaky sinus infection (locatable only by CT scan). Apparently, I've had the sinus infection for quite some time. On the plus side, Ivonne and I may soon be able go home after we learn to infuse me with the two or three I will still need (Ivonne, by the way, has a roll-away bed in a corner of room N-358). But I might be in hospital longer now that I've earned accolades from the staff for vigorously walking around the facility (and re-breaking L2 in the process, the very vertebra that was supposedly repaired by kyphoplasty more than a year ago).

To fight the CMV, I was given an infusion of Cytogam. That infusion swiftly gave me an episode of artrial fibrillation (A-fib), with my pulse at 174 but with normal pressure. Now I wear a radio device that continuously reports my vital statistics. While no one thinks I'll go into A-fib again, there's another opportunity to see if no one is right coming up soon (there's another Cytogam infusion in forty minutes or so).

On the plus side, the food is better here today than it was when I had my aSCT here in September of 2005.

But enough about me. I must mention my aged brother (he's 67) who has diabetes, congestive heart failure, high blood pressure, stage 4 lung cancer (NSLC) and a leg shortened by a motorcycle accident in Italy many years go. Last week he broke his leg again. The femur this time. Joe is one of the rare individuals whose NSLC has not progressed in something like three years.  Need I mention that this injury is tragic?

There's more, but it will have to wait. My new pain killer, MS Contin, is taking control....

˜

How Sixty Votes Killed Healthcare

The confidence Obama radiated when it came to managing a generational and massive change in health care puzzled me. It was more than confidence, really: somehow fixing health care was such a sure thing he could give Congress all the time it needed to work out the details, none of which seemed essential to him. Occasionally he would make impatient noises, but not loudly enough to bother anyone involved in the process, if you can call with a straight face the months-long debacle we witnessed a "process."

But what was clear from the beginning was that the process involved having sixty votes, the supermajority necessary for the senate to pass anything more significant than a tribute to motherhood. Any filibusters could be overcome with sixty votes. Obama knew this, and many very smart people believed it. He wasn't that concerned then with the details: he wanted a few Republican votes too to sanctify the new bi-partisan, or maybe it was post-partisan, era.

Why not give in on a few details, like the public option, when, in the end, he couldn't be filibustered and he had a majority of the Senate? He was certain that he would get enough of what he thought was needed that the rest could be corrected and improved over time.

The only problem with this don't worry, be happy, give a little here, give a little there approach was that he didn't actually have sixty votes. I haven't been able to sort out how many he brought to the table with any degree of precision, but I'm estimating conservatively he was at least five votes short of the magic number.

I blame Howard Dean, who, as chairman of the Democratic National Committee, had the brilliant idea of heading up a fifty-state campaign rather than just sticking to those seats which, traditionally, the Democrats had won or held in the past. Dean's strategy worked, in a way. The Democrats won seats in traditionally red states, which is what got them within claiming range of the sixty vote trump card. When push came to shove, though, the idea that these red-state Democrats would loyally vote with their party (for cloture) rather than for what would sit well in their states (against), just seemed like political suicide to them. I would have loved to have been in the Oval Office when Obama realized that there was an important aspect of his sixty votes he hadn't fully thought through: he didn't have them.

As a result of this profound miscalculation he was presented in the end with a Democratic Healthcare Plan written by Republicans, insurance companies and Big Pharma, which, at the same time, fractured the Democratic party and its supporters. Obama found himself negotiating for the sixtieth vote with people who had no intention of giving it to him unless nearly everything important to Democrats, Independents, and Progressives, as well as everything objectionable to the various corporate entities, was deleted or watered down first. Even the bill's democratic supporters saw an opportunity, by hesitating, to add a bit of last minute local pork.

Independents and progressives abandoned him and his party wholesale. Unions are furious. Why should anyone support and defend an insurance-company give-away bill in the 2010 elections whose major feature was that it has a big D on its cover? Especially, why stick around now that it has become clear that the first item on the Republican agenda in 2010 is to repeal it should it pass? (The Republicans are alarmed now by the possibility that the bill won't pass!)

Which brings me to the haunting thought: what would the last year had been like had Obama realized from day one that he didn't have sixty votes? What might have passed the Senate and how might it have been done? I'm still puzzling over that one.

At this moment, the Republicans are undergoing a gut-wrenching reorganization of their party, and there's no doubt in my mind that a similar reorganization is beginning with the Democrats. Both parties desperately need the hard days to come to whittle themselves down to size and back to basics. Democrats will be far better off if today they give up the delusion that in some universe they have the sixty votes needed to break filibusters. Maybe the Democrats will then finally turn a degree of appropriate attention to Joe Lieberman (who in college had been a hero of mine in civil rights). The Republicans might find a way of unifying a party dangerously close to flying apart in ideological warfare and attract a broader swath of voters, especially independents.

Once the Democrats realize that they beat themselves on health care with their own delusions and fully accept a loss as great as any suffered by Clinton in 1994, once Obama stops trying to force them to be some mythical post-partisan party no one wants to belong to, they might actually be able to accomplish important things before their time runs out. But they will accomplish nothing until Obama accepts the full enormity of his blunder. Over the next few weeks, we'll see if he can.

Days of Disaster

On Tuesday, I needed an long infusion of Igg because after looking at my immunoglobulin panel, it became clear that I have no or few working normal immunoglobulins. I may rewrite this post when able with explanations because this is the 4th day of a 40mg dex pulse and I'm incompetent as hell today as a writer, but for now, accept that the results of the Igg test, not normally used by light chainers like me in disease management, scared me. This allo transplant has to begin and it's being delayed for bureaucratic insurance reasons unclear to me.

On Wednesday, 10pm, after I finished a conversation with an high-school buddy, I went to brush my teeth, and was stunned to notice a vast flow of blood coming from my nose, beard blood red. It was a complete surprise. The blood high up in my nose, beyond the range of probing fingers, was coagulated and involved one nostril, no flow to the rear, so was able to rule out correctly pulmonary involvement. At least I hoped my conclusion was correct. The flow took more than an hour to stop. Because of complicated insurance issues, I tried to avoid urgent care. I held on instead.

This bleeding happens when the density of platelets in the blood drops enough to stop coagulation of wounds. Wednesday early I nicked my thumb on a knife cutting a bagel. Tiny and annoying. Bandage. Done. Thursday, brushing my teeth, the old scratch opened up as new and I was covered in blood again. Off to urgent care now, no hesitation. We tested the hell out of me, I recovered on my own, and now I think the recovery may be stable. Some weird consequence of the Igg infusion is my guess. No one seems to know. I have acquired a bit of phobia of nose blowing. I was in urgent care for nearly three hours before the decision was made to let me go after fighting the blood since 7 am. Exhausted.

I am stoned out of my wits at this moment on steroids, and this post is in no wise as carefully written as I would like (I think I'm writing pure jibberish), so maybe a clear head day will come soon and I'll fix it. But I thought you'd want to know that my life seems to be hanging by a thread, but the thread from Scripps Clinic is a good strong one so I'm still ok. Still, I would feel better if someone removed the sword. Like Damocles, I'm having trouble relaxing under it.

An Apology to my Readers for my Silence

The most important miracle in my new life, my marriage with Ivonne, I've talked about. The second miracle, the medical miracle I discovered that may yet save my life, I have talked about. What I haven't talked about is the terrifying, confusing, hostile, dangerous process of bringing her to live with me in America. I have written a substantial post on the subject, or at least a crackling-good first draft of it, that I had intended to post this week now that the seemingly more dangerous phases have passed.

On the other hand, I have become afraid of my own government and feel caught up in an American system that I truly believe is as hostile to Americans as it is to foreigners and is perfectly capable of doing anything they want to do to me and my family including destroy us. So I can't post about our experience until I feel perfectly free from personal retribution from my own government. If you're thinking I've taken a paranoid turn, believe me, if and when I can tell you about what has happened, and the risks involved, you will understand why this rare condescension to madness is necessary.

So I will remain silent, and I ask for your patience, for one day this year all of the issues will have been settled. Then PERHAPS I will feel free to lay the whole terrifying story out for you.

But the silence just kills me because this blog is about telling the complete and utter truth about everything I write about, and to write about everything of importance relating to battles with cancer and my struggle to gain peace of mind and hold on to it come what may. The struggle I can't write about has done more to undermine my sense of peace than even the cancer, and I want to explain why, because that's what I do: I explain. Without exaggeration. As clearly as I possibly can.

Lately, I have learned the four key answers to all questions from authority: Yes, No, I don't know, or I don't remember. If none of those work, I try, May I have a glass of water?

I chafe at the muzzle. One day, I hope I will feel that Ivonne and I and the children are sufficiently safe that I can talk. Not yet. I am sorry for my lack of courage at this point. This may be the first time in my life I've caved in to fear.

New Years: A Day of Personal Recognition & Appreciation

The New Year holiday has never meant much to me. I don't think I've been invited to a cocktail party in thirty years. I don't make resolutions. I do like to watch an exciting, close football game but if the score isn't close I regret wasting my time. I have no favorites except Yale.

This year is different. My bizarre brain, which generally does whatever it wants to do, is obsessing on redefining the holiday to be something important. The highest part of my mind, a kind of self-observing consciousness created during sixteen years of psychoanalysis, warns me of possible neurotic reactions or generally crazy thoughts. It got my attention. We had a long discussion about whether not this redefinition is bizarre in general, a one-time good thing that is more properly categorized as working down my bucket list, or a permanent redefinition of the holiday. The resolution: I'll know which it is next year, if I make it that long. And since when has bizarre been a problem for me?

It is not unlikely that I could die soon, although I'm doing my level best to postpone it. As for now, what better time than the present could there possibly be to acknowledge the gratitude, a completely inadequate word, I feel for those people in my life who volunteered for their own reasons and with no expectation of return to make my life easier or better when I desperately needed my life to be easier or better?

So I made a list and contacted them. The list include Charlotte, my high-school civics teacher (who was never actually my assigned teacher!), who for whatever reason decided to make high-school much easier for me to survive (I never should have been in public schools). She gave be a "job" that got me out of dreaded lunchroom so that with my unlimited hall pass (another story, another gift) and my exemption from PE (another story) I could spend my free time in the safety of the small History/Civics teachers' office. She successfully fought for my inclusion in the National Honor Society despite the furious opposition of my Spanish teacher and others. She did many other things for me, some of which I'm sure I'm still unaware, for no comprehensible reason other than she wanted to. She claimed no credit, took no bows, asked me for nothing. I loved her. Still do.

In fact, nothing she did she was obliged to do, nothing she did for me can be characterized as something I deserved or earned. It was a pure gift from a great person who sized me up in a suprisingly short time and made a personal commitment to help. These are the kind of persons on my New Years list. They are still alive. Some are still with me and still giving.

They are my rescuers.

So I called her up. She's old as dirt today but still smart as a tack. I prepared with much deep thinking before I was satisfied that what I wanted to say was as clear, correct, and forceful as I could possibly make it. Dedicated fans of this blog know just how effective I try to be. The message got through. She was happy. So was I. Sincerity and clarity isn't repayment in the slightest. Delivering my message may actually diminish the purity of the gift for a few of these truly anonymous givers who already know their gifts were not wasted. I apologize to them. I have to try.

It's not a long list, these special volunteers who came from nowhere to decide to make my life better, easier, or safer, but the ones on that list have been in fact, the purest, greatest gifts of my life. Because I am not always good at thanking people, and reveled in these gifts as if I deserved them, I have the obligation to make it clear that I am not an insensitive, unaware beneficiary. Now, while I still can, I need to tell each one of these amazing people how vitally important to my life they have been. Each call or meeting takes my best effort. Every one gave me something different, no gifts were the same, because what they gave was a part of themselves. I spent hours of practice before each contact, clarifying in my mind what the most effective way to ensure they receive the full extent of my appreciation and meaning. It has been a long, complicated holiday leaving me emotionally spent. There are still two of the most important people to go. Paradoxically, I am now emotionally stronger than ever and more at peace.

[A curious aside. In most or all cases, these volunteers, angels if you believe in angels,  sized me up in a very short time, many within minutes. Their private decision to treat me differently was made, unbeknownst to me, and without any overt indication. If I earned such great gifts in any sense of the term, and that's questionable, all I did was present myself. Each saw and understood what I was, that I needed something they could give, and on the spot they decided to give it to me. Some of these extraordinary gifts have continued for life. The only way I have really had to thank them, until I redefined New Years, was to make the most it. That just isn't enough for me now, not nearly.]

I cannot describe the vast peace of mind that that doing this has has given me in return because each story is unique and I would have to tell them all to you in specific the way I told each of them. I wish I could, but to me, sharing the specifics would be inappropriate. I can only hope that my clarity, sincerity, and, in a couple of cases, tears, in some sense has made them feel that I know they have done good and wonderful things and that I refuse to die before offering my vast, stunned, appreciation.

Maybe everyone has some like this in their lives. Not a friend, exactly, they are on a different list. If you are fortunate to have had such people in your life, such angels, you might want to think about reimagining New Years too. Or better yet, thank them now, while you still can.

Miracle Two

A year of data

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

 

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

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

All I could do was watch TV.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Well, here's my perfect plan.

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

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

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

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

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

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

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

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

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

Now tell me this isn't a miracle!

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

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

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

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

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

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

 

Scrooge Discovers He Has Survived the Night!

Two Miracles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

His simple response: gracias.

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

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

MIRACLE TWO

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

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

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

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

Dex and Dope

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

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

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

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

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

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

Nurse Ratched

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

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

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

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

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

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

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

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

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

Glad to be Wrong!

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

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

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

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

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

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

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

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

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

Yeti and Me

Yeti: 1992–2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bye for Now