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.