Not an especially cheerful title, I know. I’m cribbing it from Elisabeth Kubler-Ross’ classic work which first described the five stages of grief. You’ve certainly heard of these:
At one point early in my illness, Jing asked me what stage I’m in. I dispute whether these apply to me at all, but for the sake of completeness: “Denial” lasted no longer than it took me to open my eyes again and talk to the doctor in the ER immediately after my diagnosis. About 10 seconds, tops. “Anger” never manifested. What’s the point, right? Or, maybe I don’t have an angry personality. Ditto “depression”. “Acceptance”? Fuck that. One of my very favorite novels of all time is “Thirteen Moons” by Charles Frazier. In it, a half-blood Cherokee named Featherstone — a heroic, larger-than-life character — has a stroke while sitting in his armchair and is sent to the afterlife where he declares his death to be aesthetically unacceptable and refuses to stay in the dark lands. I sympathize.
One could argue that my entire life after diagnosis is one long exercise in bargaining, but I prefer to make my own conceptual stages instead. I tentatively propose “the three stages of beating cancer”, which I summarize as follows:
- Die well
- Die fighting
- Fight to win
Like the five stages of grief, these are not linear and will not manifest themselves in everyone. But, having closely watched myself and some of my fellow travelers, I think there’s some truth here.
Stage 1: Die Well
When I was diagnosed, I had the misconception that cancer, especially brain cancer, is something that can only be beaten in unusual circumstances. For the cancer survivors who read this blog, I’m sure you’ve noticed how people look at you as though the angel of death were standing behind your shoulder? It explains some of the less-than-sensitive things well-meaning relations and friends do. Happily, that look goes away after people get used to the idea that you’re still alive. In any case, between my diagnosis and surgery, I was basically numb. I know now that surgeons are consummate professionals, and that complications during surgery are extremely rare, but to the extent that I was thinking at all at the time, I was thinking about how many things could potentially go wrong when one’s cranium is open. My last thought before the valium pulled the curtains was: “please let me see my children’s faces one more time.”
Euripides wrote that “Courage may be taught as a child is taught to speak.” This has always been ambiguous to me: does he mean that courage can be taught to children so young they’re still learning to speak? Or that courage is taught by example, in the same way that a child is taught to speak? I favor the latter. In either case, my mind was focused on proving to my children that if I were to die, I would meet it with courage and dignity. If that’s the only use that I could be to them, at least I’d teach them something in the process.
Stage 2: Die Fighting
Hearing the doctors asking me if I could hear them as I emerged from anesthesia is among the most poignant moments in my life. I recall indulging in an inward “Thank God, I’m still alive” moment before answering them. I’m also reminded of Rufus Wainwright’s “Hallelujah”. He sings: “Love is not a victory march / it’s a cold and it’s a broken hallelujah.”
Please disregard the tacky and offensive cigarette. I make allowances for artists.
Afterwards, I was completely focused on re-learning to walk and such, so I didn’t have much time to worry about what comes next. Nevertheless, I’m an academic to the core, so when I got my computer back, I immediately started reading about glioma. There’s not a heck of a lot out there written about low-grade glioma, so I had to read about its big bad cousin, glioblastoma. The literature was crushing. Every single paper has some variant of this sentence: “Glioblastoma is a devastating illness with a grim prognosis, in which recurrence is inevitable.” A word cloud of the Introductions and Abstracts of GBM papers would be demoralizing indeed. Never mind for the moment that recurrence is NOT inevitable; at the time I hadn’t met the network of cancer survivors who prove by existing the fallacy of this cliche. Hearing how awful and unstoppable glioma is has a way of taking your breath away; perhaps academics should write their papers with an awareness that real life patients might be reading it someday? A modest suggestion. Nevertheless, I was left with a question: if glioma is invariably fatal, what am I to do with the time I have?
Through force of habit, I briefly toyed with the idea of cranking out one or two of the papers I’m working on in lab, but I immediately dismissed that as being way too shortsighted. Science is great, and I love publishing papers, but it doesn’t fill you up. As usual, my mind turned back to my kids. I want them to remember me as being willing to do anything to keep being their dad.
In The Lord of the Rings, during the siege of Helm’s Deep, King Theoden is facing inevitable defeat, and he urges resistance: “If this is to be our end, then I would have them make such an end as to be worthy of remembrance!” In complete agreement, I started looking for every possible positive prognostic factor that improves survival, and I made a detailed study of the actions and mindset of cancer survivors. There are great resources available. The point being: if one is judged by one’s enemies, there is much honor to be gained in fighting back against cancer, even if it just buys you a little more time.
Stage 3: Fight to win
As long as you’re buying yourself more time, why not simply outlive cancer? Every cancer has at least some longterm survivors, and the slope of every Kaplan/Meier curve I’ve seen flattens out over time. So, every single day you survive, your odds get a little better. Dr. Vince DiVita’s book “The Death of Cancer” makes clear his conviction that buying patients a little more time may be enough to get him or her to the next breakthrough. I’ve written extensively about the emerging technologies that are in the pipeline specifically for glioma, but other cancers as well. I’m teaching a course this semester on “emerging treatments for cancer.” Every week, there are between 25 and 50 new papers listed on Pubmed regarding “glioma treatment”. So, every single week matters, and you don’t have to do it all by yourself.
Perhaps I’m in a very elaborate and sophisticated version of “denial”, or perhaps I’m taking “bargaining” to new heights. But, I’ve watched other cancer survivors closely (including some diagnosed after me), and I think there is a pattern to one’s state-of-mind that follows predictable and understandable routes. The first week or so is completely wretched, but as you move on to actively resist the illness, things get better. Every individual is different, and these theorized “stages” we construct are going to be different for different patients. Progressing through every step isn’t necessarily guaranteed or even advantageous. In my case, I hope that my kids are proud that like Featherstone mentioned above, I refuse categorically to find “acceptance”. “Do not go gentle into that good night / rage, rage against the dying of the light.”