Tuesday, March 3, 2009

You can't know where you're going until you know where you are

On 4 November 1922, Howard Carter found the steps leading to Tutankhamun's tomb, by far the best preserved and most intact pharaonic tomb ever found in the Valley of the Kings. On 26 November 1922, Carter made the famous "tiny breach in the top left hand corner" of the doorway, and was able to peer in by the light of a candle and see that many of the gold and ebony treasures were still in place. He did not yet know at that point whether it was "a tomb or merely a cache", but he did see a promising sealed doorway between two sentinel statues. When asked if he saw anything, Carter replied: "Yes, I see wonderful things".
—Wikipedia, edited

Like Carter, squinting in awe through a small hole, genetics for the first time can glimpse the machinery of life at work. As stunning as Tutankhamun's treasures proved to be, they are as nothing when compared to the marvels beyond this new doorway. Carter saw a tomb; genetics sees life itself.

Although our perspective is limited and the machine is vast, the biggest and most complex in the universe, a few of the smaller and nearer components are becoming known. Experimenters are inserting probes through the hole in attempts to determine cause and effect. Some are even trying to repair what may be the diseased (that is, broken) parts of the machine.

The idea of genetic engineering is rightfully frightening (see Lebensborn), yet we stand on the threshold of a new era of medicine in which many incurable diseases will become curable. Birth defects will be corrected. Deformity and damage repaired. The mind gasps.

What is painful today is that some broken parts have been identified but very few can be repaired.

To bring all of this crashing down to earth, the pathology report from the bone marrow biopsy that stopped my life-lengthening transplant last Friday shows that my marrow genes are not expressing cytokine CD45. This paper, which I found yesterday, and which is not an easy read, says that if I go ahead with the transplant, I may get a good initial result but it won’t last long and the cancer is and will be resistant to other chemotherapy.

When I was diagnosed, I had little understanding of the calamity that had befallen me. Medicine was something I never had an interest in studying, but suddenly I needed to understand, not only what was happening, but also what would happen to me. What I learned made me realize that when you have an incurable, universally-fatal disease, such as multiple myeloma, you have a responsibility to participate in the treatment decisions that are made, since they’re all bad.

The result, after arduous study, was a long-term plan for how to manage my cancer. For example, although my stem cells were harvested in 1998, I decided to delay the transplant itself until 2005, reasoning that since the evidence showed rather a fixed benefit for the first transplant, the longer I could easily delay it the longer I would survive. I thought I would also benefit from using the 1998 cells, wrongly as it turns out, because they were not far evolved and had not become resistant to chemotherapy.

Part of the thinking was correct. I’m still here, nearly eleven years later. When I was diagnosed, the average survivability with transplant was five years.

My point is that I had made a plan and was able to follow it. A plan lets you see into the future, which is a comfort in itself, but a good plan may give you some control over your destiny, which for me was an even greater comfort. It is not all illusion, not always.

Then came yesterday’s CD45 report. For the first time in a decade I found myself demoralized. The plan I had been following is gone. The threshold I’m standing on leads to terra incognita, which to my ear sounds a bit like “terrified.”

One of my dear friends advises that now is the time to be existential, and I can’t argue with that. It is important not to give the cancer one extra minute of thought, but rather to embrace all of the wonder and joy of life that is everywhere. Since diagnosis, I have come to live much more in the present, much more as a part of the moment. I love the feel of sunshine on my skin.

Yet I strongly believe that it is necessary to ground oneself in the truth no matter how painful or unwelcome it might be. The truth is what puts solid ground under the feet, providing a valid basis for hope and direction. Now is not the time to look away and lose my way in religion, resignation, rage, fear, dietary supplements, or a last trip around the world.

Yesterday was difficult, having to confront these demons, but I survived. So instead of feeling as if I am at the end, I’m glimpsing a way ahead, albeit, like Carter, through a tiny hole. Already the wheels in my head are turning and plans are forming. I’ve found a couple of clinical trials that have promise.

But that can wait. This morning may have had a bleak look to it, but San Diego has rebounded too, bright with the kind of winter sunshine that makes it seem wonderful to live in such a boring city. It’s time to go outside and enjoy it.


  1. Your eloquence and clarity, Lon, give me a view into the MM world that is unique. I have a relative who has gone through two "autos" and is now preparing for an allo... I am coming to realize that each MM case is more individualized than it is common and so the treatments must be tailored to the situation. How unlike other cancers which have many commonalities and protocols which work! As I follow your story, I offer up a prayer on your behalf and hope there is some comfort to you from knowing there are strangers who care.

  2. I have to add a clarification. Just because we are on the threshold of a revolution in medicine doesn't mean that we are close to making practical use of what we are learning. The world behind the probe hole is so immense and complicated that effective treatments and cures may lie in the far distant future.

    I hope this machine-level genetic medicine isn't as far off as the practical application of artificial intelligence, which over the last fifty years periodically surfaces as a breakthrough on the near horizon but which never actually arrives.


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