Mets Day 1088: A reluctance to lift my eyes

For the past three years, I have limited my life horizon to a three month window until the next scan. I knew that over 90% of patients with metastatic bladder cancer die within five years of diagnosis. Knowing that my metastatic bladder cancer could (and very likely would) explode anywhere in my body without notice or detection until the next scan, I found that focusing on the here and now was far better than worrying about what the next scan might reveal. The next scan might require me to plunge back into chemotherapy, or some other treatment, or be a harbinger of my imminent demise. I accepted that I could not control the course of my cancer, and through that acceptance learned to live one day at a time.

A consequence of that state of mind was that I declined to make firm plans after the next scan, and generally avoided thinking more than a couple of months into the future. I accepted that the next scan might require me to fundamentally change my course of treatment, or signal that my demise was much more imminent. My life's planning period was telescoped into the next three months. I would not buy nonrefundable airline tickets beyond the next scan (except for Southwest, which has no change fees). I would not project hope towards distant events, such as a graduation of child, or that I might see my children marry. Instead, this day -- the current day -- was where I tried to keep my concentration.

This focus on the present had unexpected benefits. The idea of exercise for my long-term health went out the window (not that I did a lot of it before cancer).  I now had a much better excuse for exercise avoidance: no amount of jogging or cardio was going to change the fact that I had terminal cancer. I was more willing to indulge in dessert (not that I needed additional prompting), since there was no evidence that drinking asparagus smoothies or eating kelp (or whatever the fad of the moment was) would in any way affect the course of my disease. I didn't have to worry about saving for retirement, or global warming, or any other long-term event. Politics became less interesting; I stopped caring about who would be elected president in 2016.

Now, however, I'm beginning to wonder if I should maintain this viewpoint. The news from last week's scan strongly suggests that my metastatic cancer is shrinking, at least for now, as a result of the experimental treatment with nivolumab. I know that these results are preliminary, and that there is no basis to predict how long these results might last. We simply don't have the data. That's why I and hundreds of others are in this clinical trial: to find out just what this drug does to people with metastatic cancer, and whether it is a temporary effect, or perhaps longer lasting.

The FDA has not approved a new drug for metastatic bladder cancer for more than 20 years. Hundreds of drugs have been tested, and none have had any proven beneficial effect. Bladder cancer is an especially tricky beast, with a number of mutations and a tenacious adaptability. I'm hoping that nivolumab might break this drought, but past experience suggests caution.

So what does that mean to my life orientation? Do I begin to lift my eyes up from my three month horizon? Do I begin to hope that I will be able to see my son graduate from high school in 14 months? Can I reasonably hope to see the college graduations of Spencer, then Kirsten, and eventually Garrett? Will I be able to share in the joys and sorrows as Garrett labors though his volunteer missionary service for our church? Do I allow myself to contemplate what if I live long enough to see all my children married? Do I permit myself to contemplate growing old with Jennifer?

For three years, I have steadfastly avoided such thoughts. I found that, if I fondled distant hopes that I was highly unlikely to witness in my mortal existence, I would be filled with sorrow. Early in the Shawshank Redemption, Red told Andy, "Hope is a dangerous thing. Hope can drive a man insane." After my mets diagnosis, I understood why holding such long-term hopes could contribute to dangerous thoughts, anger, and a loss of faith. By contrast, at the end of the movie, Andy writes to Red, "hope is a good thing, maybe the best of things, and no good thing ever dies." And there it is: when can hope triumph over death?

I now find myself somewhere between Red and Andy. I would like to hope that the nivolumab will prolong my life, and let me look forward to events more than three months in the future. But I am not yet willing to plunge into that dangerous whorl of hopes for my future mortality. The transition from BC (before cancer) to AC was wrenching enough. I do not yet have enough empirical basis to believe that I might be in that 5% of metastatic bladder cancer patients who make it to the five year mark, let alone far beyond that.

From time to time, the New York Times has carried a series called "Life, Interrupted" by Suleika Jaouad, who chronicled her journey with leukemia starting at age 22. Her latest column discussed her fumbling with the transition from active cancer patient to former cancer patient. She wrote that,
"in some ways the hardest part of my cancer experience began once the cancer was gone." Her realization that she could never go back the the person she was before cancer, coupled with the complications of her treatments, prompted her to wonder about her life foundations.

 On Friday, Jennifer and I went to the Ft. Lauderdale LDS temple and spent some time contemplating matters of eternity. On the drive down and back, we discussed whether the news of the recent scan should alter our life plans in any way. Could we start thinking about the possibility of having many more years together, instead of anticipating my premature death? Could we reasonably think about an empty nest in two or three years, and where we might live, and what we might do? Could we think about reopening the doors behind which we had stored our ideas for growing old together? We peered into those dusty dreams, had a long and thoughtful discussion, then decided, not yet. Not yet.

I am not at the point where I can think of myself as a former cancer patient. Yet. Yet: the mere fact that I can add "yet" is a shaft of sunlight on an otherwise terminal horizon. It is hope, and it is a dangerous thing. I am not yet ready to give into that hope that I might have years, instead of months, of mortality. Yet on this Easter weekend, what better time could there be for the promise of hope: it is sown in corruption; it is raised in incorruption: it is sown in dishonor; it is raised in glory: it is sown in weakness; it is raised in power: it is sown a natural body; it is raised a spiritual body.