My big fat cancer failure

You’re dying to know about the cancer thing, right?

I failed to make it to forty without a cancer diagnosis.  It was a whopper too, not your little case of the cancer sniffles.  No stage-one this or that, no basal cell carcinoma.  I had to go and come down with fancy cancer.  When I was 39 and my kids were not quite 2 and 5, I was diagnosed with an ocular melanoma.  That’s right, eye cancer.  Ocular melanoma is not given a “stage” like other cancers, with stage one being pretty hopeful.  It doesn’t spread out through the lymph nodes, so instead it is simply labeled as small, medium or large.  Mine was medium, which according to the obligatory food reference is the size of a dried chickpea (I just measured this.) A dried chickpea is not very big, but then again, neither is your eyeball.   There had not been an obvious problem seven months prior to diagnosis, at my last eye exam when I had retinal photos taken.

 Now, there was some good news.  The treatment is very low key.  The surgeon attaches a radioactive plaque to the outside of your eye, and you go home and stay six feet away from other people for about seven days.  My folks came, it was great to have them here.  It’s not much in the way of pain (though I’m sure I was whiny), and after a day or two you get used to the pirate look (I had to wear a patch covered by a lead shield.  The kids put dinosaur stickers on it, when it wasn’t on me.)  After a week or so they took the plaque off and I kept the patch on for another week.  After a couple of months I even went back to wearing contacts.

 Twenty years ago the state of the art treatment was to just yank the whole eye out (enucleation, if you prefer something less graphic), so this was a big improvement as far as I was concerned.  My vision has so far been great, only about 10 to 20% worse than usual, though I can expect radiation effects to diminish that for the next couple of years.  Any vision deterioration is not correctable since it affects the retina, not the lens.

The catch is that there are really two genetic forms of ocular melanoma.  One form has a 90% survival rate over 15 years.  The other form has a 30% survival rate over 15 years.  Until a couple of years ago, there was no way to tell which kind a person had.  Then, just at the time I had my surgery, a company called Castle Biosciences started offering a genetic test.  So right before Christmas of ’09, I learned that I had failed that particular test.  My unoriginal response to the retinal surgeon upon hearing this news was "shit".  Officially, I have a 50% chance of being alive by the time my younger child goes to kindergarten in a couple of years.  I have a 30% chance of being alive by the time my older child graduates from high school. (Pause for magical thinking moment…40, 50, 60, 70, 80, 90, 100%!)

This is a very weird diagnosis for a bunch of reasons.  One is that there is nothing wrong with me.  The primary tumor was killed with radiation.  Quite a lot of CT and MRI scans have shown that I have nothing nasty going on in my liver and brain.  I’m told that while metastases tend to occur in the liver, they can actually show up virtually anywhere at all, at any time. Soothing, huh?  Another weird thing about this diagnosis is that there is no protocol for treatment.  This is a pretty rare cancer, and until lately they couldn’t even tell which people had the bad kind.  So me and my oncological posse are making it up as we go along. 

Despite being a rare cancer, one of my favorite authors, Oliver Sacks, has also had ocular melanoma.  He’s alive, too.  Go Oliver!

Now I have what one friend refers to as my little medical hobby.  Every three months or so I have bloodwork done, then get an abdominal MRI, then see my eye surgeon for a major checkup, then see my oncologist.  Every other two weeks I do daily injections of a drug called Leukine.  Theoretically the Leukine should boost my immune system to eat up any cancer cells.  There is no evidence that the Leukine will help me, there is no evidence that it will not (it improves life expectancy, marginally, in people with metastasized melanoma).  There is a small chance that it could later give me leukemia.  The injections are not as bad as you might think (I’m the queen of ice packs as anesthesia.) Every time I'm waiting for MRI results I spend several days as a basket case.  It is very much like what I imagine a falsely accused defendant feels like in a death penalty case while the jury is out.  With each MRI and CT so far, the jury has instead opted for something more like a long sentence.  I hope it’s a very long sentence.

There’s not much else to do in the land of treatment.  I try to eat a healthy diet with a lot of colorful organic produce and whole grains and less in the way of sugar, animal products and processed food.  I try to exercise. I’m a good sleeper, I avoid stress.   I do a lot of magical thinking and denial and a certain amount of meditation and visualization. I keep strong connections to many friends and my family.  Mainly I fail to do all these things as well or often as I think I should.  I work very hard to think about it as positively as possible.   I work very hard to think about it as little as possible.

 Some people with this diagnosis, many people with this diagnosis, live.

I take comfort in the successes of others.  Another science writer I really like, Stephen Jay Gould, was diagnosed with peritoneal mesothelioma in 1982.  This was a cancer with a median survival of eight months after diagnosis.   As a scientist, he immediately wanted to know everything he could about his grim diagnosis.  One thing he noted when looking at the distribution charts of mortality for his disease, was that the tail of the distribution never dropped to zero.  What this means to a layperson is that some people with his diagnosis were continuing to live far past their life expectancies, years and decades past their life expectancies.   As it happened, Stephen Jay Gould was completely cured of his disease and died twenty years later of an unrelated cancer.   David Servan-Schreiber tells his own similar story in the excellent food book, Anticancer. (David is still alive and well.  Go David!)

Look, if the signup form comes across your desk, don’t check the box for “ocular melanoma”.  But I’m aware every day of worse possibilities.  Also, nothing focuses your mind in quite the same way as a potentially fatal diagnosis.  There is no way to know how you would react unless it happens to you.  In my case it has made me acutely grateful for my very mundane life, which I now see as amazing.  It has me sure that I have the exact life I want to be living, perhaps with a few more hugs for my kids.  Mainly, I want to follow Stephen Jay Gould’s example and end up in the long tail of the distribution.