The haunting question

So the question that haunts me is: Might I have averted this crisis had I better monitored the possible spread of my melanoma? I think it’s possible, but as with most things related to cancer, there are great ambiguities to its expression and progression. Melanoma would be a far less dangerous disease if its natural history was remotely predictable. Like oncologists who treat cancer daily, I remain humble about drawing definitive conclusions about its behavior.

That said, I will concede that the blackout I experienced while running June 13 was an early and obvious warning that something was not right. I blew it. I should have scheduled a brain scan that day. It can’t be proved that the brain tumor was the cause, however, as even my neurosurgeon says he thinks the mass he excised the other day was less than two months old. The possibility remains that this might have been nothing more than a bad bonk by an undernourished middle-aged runner. That sort of oddball thing happens sometimes.

At the least, passing out when I have stage IV melanoma should have prompted me to think that a brain scan might be in order. That seems obvious now as I write this, but when you’re living with cancer and actually thriving physically, it's a very difficult option to consider. After my melanoma advanced to stage IV in Jan. 2010, I adopted the philosophy that in the absence of physical symptoms, I would not schedule scans (PET for body and/or MRI for brain) on the timetable typically recommended for survivors like myself (every three to six months). It was a calculated gamble that did wonders for my mental health.

Until the events of this August, I had had no scans of any kind in the 17 previous months—despite the scads of little subcutaneous mets that kept cropping up and being excised. At a subconscious level, at least, I was feeling pretty invincible. Both my surgeon and oncologist understood my decision, and said nothing to convince me to do more. There is very little in the medical literature that contradicts this strategy. Organizing one’s life around treasure hunts for cancer was not how I wanted to live my life, and my docs (to their credit) seemed to understand that.

The irony of finally caving and having a whole-body PET scan on Aug. 1 was that it didn’t even hint at a brain tumor. That would have taken an MRI, which is the gold standard for brain imaging. Melanoma can metastasize anywhere, but as I’ve written before, I never imagined it would go to my brain. That was another miscalculation. Had I also received a brain MRI on Aug. 1—just five days before my medical crisis—a surgery could have been scheduled before the worst of the bleeding began. A very dangerous situation could probably have been averted.

The lesson you might expect me to have learned from all this is to play it safe to stay alive. Just get the damn scans. Well, going forward, I would agree. The stakes have obviously been raised. In retrospect, however, I’m not so sure my inaction on surveillance scans the last couple of years was so wrong. I remain determined to avoid the excessive medicalizing of my life. The choices we make as patients in how we live define who we are. They may not always be perfectly rational, but there is truth to them just the same.