Saturday, September 17, 2011

Eulogy for Ebbe

Ebbe Skov was diagnosed with multiple myeloma, an incurable, universally fatal cancer, in 1999, less than a year after I was. In such a horrible context, it was great good luck that I met him and his devoted wife Margrit at a local support group meeting. A difficult journey into a strange and terrible land is always easier with amiable companions, and he was certainly that for me: always cheerful, supportive, objective, and reliable. He belonged to a like-minded group of us who fought the disease together in a similar way: now, I’m the only one of us left.
We were scientists who fought our disease like scientists. Ebbe read every relevant journal article he could find; plotted the mathematics of his disease on charts and spreadsheets; and knew his options better than his doctor, whom he doggedly tried to educate. He did his homework, which many of us are unable or afraid to do.
Ebbe managed to be vigilant without being afraid, which is a rare accomplishment. I’ve never known anyone who monitored his condition as closely as he did, which, for him, was a requirement. While most of us have bone tumors which are easy to sense, because they hurt, his could be anywhere, symptomless: around the throat, over the heart, or in any soft tissue. He was regularly besieged by them.

Yet throughout the ordeal, I found his spirit to be truly remarkable. Fear did not bend or break him as it does so many others. He did not panic, nor did he feel sorry for himself: I never heard him say, “Oh, woe is me,”  “This is so unfair!”, or a bewildered “Why me?” Instead, he donned his armor, polished his sword, and went after the Beast with everything he had. He fought an heroic battle despite knowing he would eventually lose: a rare man indeed, a leader and an inspiration to the rest of us who must follow.
My theory is that the bravest and most successful cancer warriors have the support of a strong woman, and Ebbe certainly had that. Despite the heavy bludgeoning of fate, Margrit was forever beside him, loving him, lending her strength. As a result, he lived more than twice as long as most of us do.
My personal journey will be harder now without him. Good bye, Ebbe, dear friend!

Tuesday, September 13, 2011

Once more unto the breech, dear friends, once more

This morning I was up early despite having a restless night. My second-floor bedroom opens unto a small balcony. I listened to the birds at the feeder about ten feet away: it hangs from a nail under the eaves. Actually, what roused me was what I was not hearing: the raucous sound of finches, sparrows, doves, and the occasional scrub jay squabbling over the six prime feeder positions. (Although at first glance they appear to be fighting, their beak-to-beak pecking is stylized: they are careful not to do each other any real harm.)

Then I realized I hadn't filled the feeder last night. As quietly as I could manage it, I slipped out of bed, put on my shoes, and slowly and carefully opened the screen door: I didn't want to wake Ivonne. I keep a weather-proof box of black-oil sunflower seeds on the balcony. A full feeder barely lasts one day. I failed, though, to be sufficiently stealthy to avoid rousing Ivonne. But, now, after doing a full St. Anthony, the normal, meaningless, and quite satisfying sound of dozens of birds once more enhances my morning bagel and coffee.

I absorb myself in an article in today's New York Times that seems to herald the end of the manned-space era. A couple of weeks ago the Russian cargo ship, a Soyuz, crashed on its way to resupply the three astronauts who struggle, some would say vainly, to do meaningful science in low-earth orbit. For safety reasons, the leaders are discussing bringing them home. What do you think: if we come home, will we ever go back?

Reality is crashing in on the science-fiction dreams of my boyhood. What can be reasonably done has been done. We won't be traveling to distant planets, or warping time and space: we're stuck here and have to make the best of it. The landing on the Moon in 1969 was our high point as a species, literally and figuratively, a triumph of technology and imagination. Mankind had been wanting to go there since the first human looked up from the ground, agape, at the night-time wonder of it. We not only achieved that ancient dream, but, being Americans, after all, we broadcasted it live on TV. Nothing we can imagine could possibly top that, not even Texas' plan to show its executions on pay-per-view.

Hope is not a strategy. I'm not one to sit idly by, hoping that things will get better. But I'm also as prone to denial as anyone else, especially when the vicissitudes of life are largely resistant to my control. While I killing time and powerful space aliens in Duke Nukem Forever, my light chain numbers, which, for me, measure cancer activity, are rising. Take a look at my latest post-transplant chart:

Click above for bigger and interactive version
The red line, which is my kappa, is now at 84.8 mg/dL, the highest it's been since the transplant. The nadir, 15.3, occurred in March. For someone who, pre-transplant, withstood a spike of 2140 (normal is 1.94), I'm not rushing out to buy a cemetery plot, but I am afraid: once more I must work through the inner process of drowning it in the bathtub. To rely on hope would be expecting to see a spontaneous drop in the future: after all, as you can see from the red line, the value has risen and fallen on its own more than once since the allogeneic transplant. However, what I'm seeing now looks more like a trend than a seesaw: the numbers have been rising since late May. The faint black line is a computed kappa trend line: no complicated analysis is needed.

One of the most difficult challenges in fighting cancer, especially one that is generally incurable and usually fatal, is to decline to ride the prognosis roller coaster that careens from denial to despair and back, pausing at times for brief moments of elation. Not every change of state is meaningful: even when a change is meaningful, the normal emotions engendered by the swings don't help. Fear is cancer's natural ally. My slowly-proceeding book is, in part, how to disconnect the corrosive and often deadly effects of fear. Wallace Stevens said it best:


One must have a mind of winter
To regard the frost and the boughs
Of the pine-trees crusted with snow;

And have been cold a long time
To behold the junipers shagged with ice,
The spruces rough in the distant glitter

Of the January sun; and not to think
Of any misery in the sound of the wind,
In the sound of a few leaves,

Which is the sound of the land
Full of the same wind
That is blowing in the same bare place

For the listener, who listens in the snow,
And, nothing himself, beholds
Nothing that is not there and the nothing that is.

Ok, so shoot me, I was a Yalie English major.

It is necessary to be able to distinguish between change and meaningful change. Most of the time, as the emotional trolly follows the numbers, hauling us up and plunging us down, the whiplash is uphelpful. But as I stand in the full cold snow of Wallace Stevens, staring at the numbers, I have to conclude that I'm staring at a moment that calls for action. Knowing when you need to change course must be coupled with the other survival skill in the battle against cancer: being clear about what other treatments are available and likely to work. Everything else is irrelevant. There are a limited number of treatments (a handful); if you earlier had become resistant to a given treatment, returning to it later probably won't work; and clinical trials can waste precious time, often don't provide a benefit, and, rarely, can do actual harm. They are, and should be, the medical equivalent of a Hail Mary pass in football.

The battle becomes much simpler over time in that fewer treatments remain. At this point, all I have left is donor lymphocyte infusions (DLIs) and lenalidomide (because lenalidomide can fight the cancer without damaging my new immune system). But I became resistant to lenalidomide years ago, so why should I expect it to work today?

Donor lymphocyte infusions will probably work, perhaps even to the extent of complete remission. After a long period of fighting, immune systems sometimes do the equivalent of redefining normal: they give up the fight, which is what is happening inside me now. DLIs will reinvigorate the immune system to destroy the malignant cells. However, while ratcheting up the graft-versus-myeloma effect, they generally also considerably ratchet up the graft-versus-host disease, which, for me has been thus far quite manageable. Take a look at how bad GVHD can get. Click on it for a really good look.

GVHD can attack anything: eyes, mouth (one of my friends lost a few salivary glands), toe and finger nails, GI tract, connective tissue, you name it. After DLIs the GVHD is usually more than mild and can be life-threatening.

The other downside is that steroids are the usual treatment for severe GVHD. If you've been following this blog, you know how easily steroids can drive me to the brink of insanity.

So, that's where I have to go next. In early September, my doctor and I will discuss going back to my donor for another shot at cure. I think he wants to try lenalidomide first, but that will take a lot of convincing.

The good news is that I won't have to endure once again the horror of last summer: four months in hospital; eighteen days in ICU; extreme weight loss; difficulty eating (even jello tasted vile); and life-threatening complications (I had pneumonia, kidney failure, deliria, heart irregularities, and a massive GI infection). I'd hate to have to repeat that experience. But, again, the DLIs are quite likely to work against the cancer, and, who knows, I might get lucky with respect to the GVHD. Yin and Yang, profit and loss, left and right, GVHD and GVM: no pain, no gain (or, as I say to my athletic friends, no pain, no brain).

Today I am $16,000 richer and immeasurably poorer, after State Farm totaled my beloved Mercedes SLK320. I am trying to be philosophical about losing a car that provided the most fun possible to have on four wheels (although teens would not like the absence of a back seat). In pristine condition, with but 59k miles on the odometer, this 2001 beauty could accelerate and corner as excitingly as any stock car ever made: the horsepower to weight ratio was enormous. On top of that, I loved that it could switch from a being hardtop to a roadster in 23 seconds at the push of a button: I could do it at a stoplight if the weather changed. The inside was all leather and burled walnut: even the steering wheel was made of gorgeous wood.

I really don't know how I managed to destroy it. Was it a senior moment? My eyes have deteriorated considerably in the last decade, due to botched lasik in the right eye coupled with annoying floaters and a posterior staphyloma: maybe I didn't see the center divider because I couldn't see it in the shadows. I wasn't going fast, just normally accelerating from a stop light on an unfamiliar but complicated road, trying to make a turn. Wham! Oil on the ground. Au revoir, Mercedes.
When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.
With four children, what I actually need is a six-passenger car, like a Honda Odyssey, not the two-passenger babe magnet that I had. It's not what I want, it's what I need. Doesn't that suck! I hated wondering how, with the Dow Jones falling like a skydiver whose parachute didn't open, I was going to afford a down payment: now I have one. I could have tried to rescue the Mercedes from the boneyard, but it's time to do the mature thing. As a result, my inner teen is screaming.

Fate has a sick sense of humor. After diagnosis, when I could no longer work and was surviving solely on private disability insurance, a man who owned an air ambulance company whacked me on my motorcycle in 2003, putting me in a wheel chair for eight months and making me $1.6M richer. I had wondered how I was going be financial secure before the cancer got me. Thanks, Fate—next time, let me win the Lotto instead! (I did salvage the motorcycle: it's in my garage needing a bit of work. The trouble is, I'm getting to be too old and too slow, and the neuropathy in me feet is so bad, that I can't ride it safely except around the block. Ratz!)

Words of wisdom, the first from my Computer Science professor: "He who matures last, matures most." Well, I am today reaching heights of maturity that really and truly bite. Maturity is, after all, the consolation one receives from abandoning ones goals. But, more than that, aging coupled with the a prolonged fight against a deadly illness is marked by a succession of losses: work, which defines most men; youth, which spurs you to climb mountains and lane-split on motorcycles; the future becomes more confined and more restricted, giving the lie to Robert Browning's, "Grow old with me, the best is yet to be" nonsense; losing the sense that there's plenty of time left.

[Pow!] [Bam!] [Wham!]

Ok, after slapping myself around a bit, I am reminded about how lucky I truly am: a succession of near-miracles has made me happy despite what fate has rained down on me. First, I'm still here: isn't that amazing! Second, I am happily married to a beautiful woman half my age and, at long last, being the good father I couldn't be in my first marriage. Did I mention I'm adopting the children? Shazam, instant little citizens of the US of A! I haven't run out of ammunition in fighting the cancer. My mind is sound: recently I've memorized another Beethoven piano sonata, relearned the guitar (I was a folk singer long ago), and have written a good chunk of my book (which is turning out to be an autobiography). More than a year later I'm still weak, but I am lifting weights at the gym regularly. Ivonne and I are warm and successful.

I'm well enough now to go back to work, and I need to: I have four teenagers who need braces and college educations! So I sent my résumé out into the world last month only to be greeted with a resounding silence. I'm practicing my technical skills ("Good morning, Walmart shopper!"). Maybe I can get an advance on my book (hahaha!).

Rarely is the financial disaster of cancer discussed: I think this omission is a matter of masculine pride. With disability insurance, Medicare, a small pension from General Dynamics, and the motorcycle settlement, I didn't need to worry about money: statistically, I expected to be dead long before I ran out of it. Yet, here I am, thirteen years into the fight with no end in sight, with a young wife and four adorable kids. What happens to me and my family when my house, which still has some equity in it, goes under water, my mutual funds tank, and my credit is exhausted?

I don't want talk about it. I don't want to even think about it. But ever looming in my mind is the distant specter of destitution: come visit me and my family under the I-5 viaduct at Mercy Road!

Ok, enough of the maudlin BS. I've been lucky thus far: something will come along. Some major corporation will have the good sense to hire me, my book will be a resounding success, and the DLIs will cure the cancer once and for all. And, yet, I am haunted by these words, with which I am sure you are familiar:

Stopping by Woods on a Snowy Evening
By Robert Frost

Whose woods these are I think I know.   
His house is in the village though;   
He will not see me stopping here   
To watch his woods fill up with snow.   

My little horse must think it queer   
To stop without a farmhouse near   
Between the woods and frozen lake   
The darkest evening of the year.   

He gives his harness bells a shake   
To ask if there is some mistake.   
The only other sound’s the sweep   
Of easy wind and downy flake.   

The woods are lovely, dark and deep.   
But I have promises to keep,   
And miles to go before I sleep,   
And miles to go before I sleep.

PS: My wife just told me that the Spanish translation of the title of this post reads: "Once more into the ass, dear friends, once more!"