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.

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.

First Post

Today was my birthday, so a lot of decisions were made. The first was that it was time to start the bone marrow transplant process. So I talked with the Transplant Coordinator to start the clock, and to my doctor about a pre-transplant chemo issue having to do with cramping in the hands and whether there is a problem with quinine and Velcade (there is, but the Velcade is clear of my system).

In the next three to four weeks, there will be echocardiograms, respiratory function tests, tests for every exotic disease, bacterial, virus, prion, or other, that could leap up and bite me in the ass for the ten days or so that I will have no immune system. I'll have yet another bone marrow biopsy, an uncomfortable, painful, useless historical procedure they still do even though it will have no effect. I've had something like eight of them, none of them of any value. Psych evaluation. MRIs, CT-pet scans, you name it, I'll have it.

Then I'll be in the hospital for about seventeen days, if history is my guide, as I've been through this once before, in Sept/Oct of 2005. I plan to post here frequently, because this is the kind of experience that is quickly repressed. No matter how gruesome, by summertime I'll be telling everyone it was a cakewalk. So I will try to capture the experience as it happens this time.

Which means I have a lot to do between now and the day I enter the hospital. I need to hire competent help and train them for what I'll will be needing over the next eight to twelve weeks or so.

Here's how it looks. I am going to need a person for daytime and a night person, who will share some training but otherwise the jobs are quite different.

For three weeks, I will need someone, the day person, three days a week simply to train them to take over when I can no longer do anything, especially after coming home. Which means, for example, being able to handle my African Grey parrot, Zombie:

The important thing is that these intelligent, sensitive birds need to have a friendship with the day-time person, so that when I'm in hospital, the bird will feel cared for and safe and that it's ok that I'm not around for her for a while. Such a friendship isn't formed in an hour. So the day person has got to spend time getting to know the bird and vice-versa, so that mutual trust is formed. That way the bird can feel safe and managed, and the helper can feel confident about taking proper care of the bird.

In addition, I have a geek's dream of a house, with everything complicated and tricky. There is much to learn, from how the intercom works, alarm systems, where my doctors are and where to shop and and how to handle recycling. Of course, the only people truly available live in Tijuana, where the degree of automation I have and their fascinating complications (a dryer that works by sensor, rather than by time and temperature), so the day person has to be very smart, a fast learner, despite the linguistic, cultural, and experiential barriers. It will take a month of training before I can leave my bird, cats, and my complicated life in the hands of another.

Then I go into the hospital, weeks 4-7. During that time the day job is part time, coming in each morning and evening to play with Zombie, feed, water, clean up, etc., and, in the morning, talk to me about what else has to be done, like laundry, mail, plumbing problems, special food requests and contraband smuggling, etc. I'm not going in without drugs!

Then, on week 8, I'll be coming home, if nothing truly untoward happens. But that will be only if the hospital staff feel I'm going to be properly cared for at home. Which to them means 24-hour care. So we need a night person for two weeks or so. Otherwise I'll have to spend TWO MORE WEEKS in hospital. Ever been in hospital that long? I want a suicide count!

The night person doesn't have to learn a lot. Even a responsible teen could do it. Like the day person, the night person must be able to help me if I'm sick or having other difficulty, be able to recognize when I'm in trouble, know when to dial 911 because I'm not able to tell them what to do. They need to drive, to know where to take me, if it involves a mid-level emergency. That's it. These are extremely unlikely events. So the job basically is to watch HI-Def TV, eat bon-bons, and bring me stuff from the kitchen. Go to bed early, check on me a couple of times in the night. That's it. No bird care, no pet care, no washing or drying machines with touch-screen controls that glow, just be there for when I need help.

After that, the day person can probably become five days a week rather than seven, because at that point, if I can safely be by myself at night, I can be by myself over the weekend with a little planning. A week after that I'll be out running to get my strength back, if all goes well. Here's a crappy picture of me recovering from the first transplant, after a run:

I look like a thug. My hair fell out months after the transplant, a complete surprise. Oddly, when I was bald, I got hit on more in the gym than when I had a big head of hair. Blago, take notice.

I will be able to make less and less use of the day help, which will gradually be reduced until it is no more needed. Probably about three or four months from today.

If all goes well. And that's a big if.

Soon I'll write about how I plan to maintain whatever level of sanity I lay claim to while being helpless in hospital discovering the weirdness of eating ones own lips.

Oh, when you see or call me, sing happy birthday to me. I've made all my friends do it today, and it made me feel great! (I need Fafnir to croak it out for me to make the day complete.)

I also had to give up my psychologist today. He seems to have acquired a neurological disorder that is causing shaking from intentional motion and forgetfulness as well. I do hope it isn't Parkinson's coming on, but if it is, this is early, and drugs can arrest the process. I'm feeling very bad about that, in that I have the impression he's only now coming to grips with what is happening to him. I do hope I'm wrong. [Happily, he has just told me I am wrong! The neurologist found nothing, so his problems may be coming from a long-term drug that he will now be weaned off of, with full memory recovery to follow!]

And I leaned on my older brother to be kind to himself. All his life he's been a self-destructive cross between Ayn Rand and John Wayne, a guy who knew The Right Way to Live. That's how he lost his leg in a an avoidable motorcycle accident, became an alcoholic that went dry (mostly) on his own many years ago, has stage four NSCLC (non-small cell lung cancer), congestive heart failure, high blood pressure, diabetes, and restricted airways, all of which he did to himself.

Right now, Joe is very sick and finally beginning to understand the need to be careful. Joe's house has this ridiculously tall and cruel spiral staircase that might just kill him if he climbs it every day in his present condition: he's getting a pacemaker with defib on Monday. He needs to do nothing between now and then that could trigger a collapse. It is very hard for him to accept that he needs to do this. Hard to ask for help. Hardest of all to recognize that his life is now irrevocably changed by his illness and the housing-crash related demolition of his construction business. I'm sure he feels beset by demons.

He would disagree with me, I'm sure, but I have the sense that as a young adult, he had a vision of whom he wanted to be and has pretended very hard ever since to be that person, rather like Marion Robert Morrison trying to convince himself and his audience that he is John Wayne. As a result, I don't think he nurtured the human person underneath, the one with the ordinary vulnerabilities and limitations we all share.

I acknowledge and am proud of the effort he has lately made to recognize and accept his unfortunate situation. Every day he reveals more of himself, and takes better care of himself. A diagnosis of cancer, like a sentence of execution, wonderfully concentrates the mind. Some frantically search for a miracle cure, escape to G-d or just wallow in self-pity. Others, like most of the sufferers I have known, have learned to accept, along with the diagnosis, themselves.


Also had a long talk with D, a friend of mine with the same disease who is a detail man, Ph.D. from Oxford, who firmly understands all the minute details without ever seeing the big picture. I have been working on him relentlessly for two years to make the kind of decisions he needed to make to survive, and he did, but only at the last possible space that lies been possibility and death. He finally had the worst transplant I've seen, but his cancer is in complete remission, confirmed. So now? He's addicted to narcotics he no longer needs, and which, if he continues with them, will prevent or make quite difficult his full recovery. He had also become addicted to high-dose steroids which pretty much shut down his adrenal function, and has had to be weaned off of the them, the taking of which can seem glorious, like the recreational drug Ecstasy, but steroids rot judgment.

I'd like to think he's alive and doing well now—he came soooo close—because of my rude and vigorous attempts to get him to make timely, life-saving decisions for himself. However, truth be admitted, I don't know if my efforts got him to act as much as one day before the last possible moment in which he could have acted, but there's no disputing that I tried. I was on him frequently, and bluntly. I was always afraid he'd tell me to take a flying leap.

Shakespeare understood this:

There is a tide in the affairs of men.
Which, taken at the flood, leads on to fortune;
Omitted, all the voyage of their life
Is bound in shallows and in miseries.

The problem lies in not knowing for sure that the tide you see is at the flood. The element of chance always plays, and you can only take that tide but once.

But now, it's the mop-up after battle, getting him clean of drugs and clear-headed. So I can move on to the next victim of my need to stop people from killing themselves.

Enough. This is one of two steroid days a week for me, and it's exhausting as well as exhilarating.