State of the cranium

One year ago this afternoon, while walking down Front Street in downtown San Francisco, I found myself stricken with the mother of all headaches. I also felt a numbness in my left leg. A half hour later, I called my wife at work and asked her to look up migraine cures on WebMD for me. “Why can’t you do it yourself?” she asked, quite sensibly. “I did,” I said, looking at my computer screen. “I can’t read it.” My vision had doubled.

My wife insisted that I go to the emergency room right away. And it was there, after I had vomited all over the waiting area, that I was diagnosed with a “large mass” on the right side of my brain. This was later revealed to be a grade 3 glial tumor -- an oligodendroglioma, to be exact -- one that had apparently been growing inside me very slowly for a number of years and had only just now decided that it was time for a coming out party. I was scheduled for surgery in a week’s time.

This is how I looked afterward.

This is how I felt.

After my surgery, I wrote about my experience on these pages. Since then, honoring a solemn vow I made to myself that I wouldn’t let 4DK turn into yet another “cancer blog”, I have mostly kept mum about it. However, as a lot of you expressed concern, I felt that this anniversary would be an appropriate time to fill you all in on what’s been going on with me in Cancer Town over the past few months.

My surgeon, the charmingly cocky Dr. Allen Efron, was able to remove 40% of the tumor, limited as he was by the area of the growth that had crept over to the left side of my brain and was hence inoperable. I then underwent six weeks of radiation treatment under the care of the brilliant and funny Dr. Laura Millender. This succeeded in reducing the remaining tumor by a whopping 50%. The full side effects of this treatment (which could include some hearing loss and memory issues) remain to be seen over time, but what hair I lost has already returned -- and, strangely, while coarse before, it is now as downy soft as a duckling’s little butt.

 "We are literally going to skull fuck this dude with radiation."
- a medical professional.

With surgery and radiation behind me, I am now approaching the end of a twelve month program of chemotherapy, overseen by Dr. Scott Peake, a rarely seen oncologist of considerable mystery, and the oft seen and awesome RN Mady Stovall. This I am fortunate to be doing on an outpatient basis, which means that I simply take a large dosage of the drug Temodar every night for five consecutive days out of each month. A separate cocktail of drugs takes care of the Temodar’s more onerous side effects, with the only remaining one being that I feel extra prone to fatigue during the two weeks around the treatment. Temodar, after all, is essentially poison (the pamphlet that comes with it basically tells you to scrub yourself silly if a capsule should break and it should so much as touch your skin), so it would be too much to ask that voluntarily ingesting it into my body not have at least some palpable downside. In any case, knowing the hell that chemotherapy is for many Cancer patients, I feel extremely lucky that that’s all I have to deal with.

At this point the purpose of the chemo is to keep what is left of the tumor in check, with little possibility of there being any substantial further reduction in its size. Nonetheless, the doctors are very optimistic that this state of affairs can be maintained over a long period of time. What they tell me is that I will be dealing with this for the rest of my life -- with constant monitoring and likely further treatments -- but that that is likely to be a good long time. And I am slowly, cautiously, starting to believe them. After all, aside from feeling a little easily winded for two weeks out of the month, I otherwise live as I always did, and still get to do all of the things that I love: singing and playing music, working out, taking walks, having the not-so-occasional cocktail, canoodling with the wife, hitting the local bistros with friends, going to the picture show and even seeing the occasional performance of rock music. Oh and writing this blog, of course, which, despite its frequently cavalier tone, has been more of a lifeline than you can imagine.

One of the hardest things about having cancer -- and one that I had not anticipated -- is the way that it affects the people around you. And by that I refer not just to the pain of seeing sadness in the eyes of your loved ones every time you greet them and knowing you’re the cause, but something more distancing. Due to the many different types of cancer and the various ways that people react to its treatment, this is even true of fellow cancer sufferers, with whom you might not necessarily find the deep, ameliorative connection that you or they might expect. Among the healthy, it in some cases roils up people’s personal issues with mortality -- and for those people you’re given the privilege of playing the personification of death within their particular personal narrative. Others, confronted with what they see as an overwhelming misfortune of which they feel (often wrongly) they have no comparable experience, are simply at a loss for words. Having been that person on more than one awkward occasion, I totally understand.

"Blargh! Look at my brain! Look at it!"

On those occasions when those people do grope for words, they sometimes fall back upon what appear to be the two dominant narratives about cancer in our culture at the moment: that of either “survival” or “heroism”. Both of these make my skin crawl a little bit. Survival, to me, represents both a diminished form of existence and an acceptance of that diminishment, which isn’t relatable to my own experience and certainly not desirable. Furthermore, I don’t want to identify with, or celebrate, an archetype that depends on a whole lot of other people dying for it to have any meaning. As for heroism, few, perhaps sensing my wariness, have dared to use the “H” word with me, but it has happened. In those cases I tell the person that a hero is someone who runs into a burning building, while my experience was more like that of the guy who wakes up inside the burning building.

If the truth be known, the personal quality that I think was most helpful in my recovery is one of the least likely to be associated with heroism, by which I mean my selfishness. My relative comfort with putting my needs above others’ enabled me to draw the boundaries, to create the time and space and limits that I needed in order to get well. To be deadly honest, I never felt more at the center of the universe than I did during the first few months following my diagnosis, and being a raving narcissist made it that much easier for me to accept the kindness and sacrifice of those around me. It even made me at times object less than I should have to people who implied that they had no right to complain about their problems in the face of my travails. (Even though, in truth, I felt the same way; what I was going through was nothing compared to what so many others were.)

No, rather than as a drama of heroism or survival, the way I would characterize my experience with cancer, strangely enough, is “lucky”; lucky that my tumor was at least partially operable and of a genetic makeup especially vulnerable to the course of treatment I was prescribed. Lucky that the illness came to me at a time when I had a) good health insurance, b) a solid marriage to an incredibly strong and fiercely protective woman who never fails to make me feel safe, and c) a network of wonderful and supportive friends and family members. At other times during a life marked by no moderate amount of slacking, the effects would have been much more devastating.

I should, of course, also mention my extreme good fortune in having the host of rewarding creative endeavors that I do as a result of writing for 4DK, which, by keeping my mind active and engaged and always giving me something to look forward to, played an enormous role in my healing. This includes the many friendships I have formed with my fellow bloggers, podcasters and film scribes while doing so, a number of whom I have also had the pleasure of collaborating with and who have been overwhelmingly supportive throughout (thanks Keith Allison! Tars Tarkas! Kenny B! Steve Mayhem!). The result is that the last year has been perhaps the most prolific in my career as a guy on the internet, with no few high points (contributing to Famous Monsters of Filmland, The World Directory of Cinema¸and… oh, did I mention writing a book?).

So, in sum, I think I’m doing pretty fucking good, living a life filled with creativity, crazy movies and music, and awesome people. Even allowing for the frequent trips to Redwood City (kind of a shit hole) to lie inside an MRI machine, I think that gives me little to complain about. And to you, who is reading this… well, first of all, I can’t believe you made it this far… but, second of all, thank you. If you weren’t there, I don’t know if I would be doing this, and doing it heals me. Thank you for healing me.