Three weeks ago I returned from a academic conference with a belly ache. I thought I had a stomach flu or at worst, the beginnings of a ulcer. I am 58 years old, a white male at the peak of a wonderful and deeply rewarding career, happily married for the past 22 years and proud of our son, who next year—if I am lucky—I will see graduate from the University of Arizona.
You see the word “lucky” in the previous paragraph? Or in the heading? If you noticed it at all it was probably in passing, just a kind of daily talisman we offer to the greater mystery of life in the hope that we will continue our story and the stories that surround us will continue as well.
Unfortunately, that is not the case for me. When I say “lucky” these days, I do so fully armed with the knowledge that my days are numbered, and while I don’t know the exact number I have left, I do know that seeing our son graduate from college is going to take a little bit of luck in addition to the aggressive treatment I am now receiving for stage four pancreatic cancer.
It wasn’t the stomach flu after all.
Day 5: I woke up at six a.m. after sleeping for eight solid hours, albeit aided by anti-nausea and painkilling drugs. Surprisingly, the quality of my sleep has changed very little. I’ve always been able to sleep well and relatively uninterrupted for seven or eight hours, and to arrive with the morning sun into a new world, splendid with purpose and energy.
So far, the main difference between my pre-diagnosis sleep and my current sleep is that I now wake up tired. I stand up slowly to avoid the inevitable lightheadedness that fills my vision with tiny black dots and comes with a partial loss of equilibrium. Once my head clears, I move from the bedroom into bathroom and from there to the living room and my chair. Those few steps take a noticeable toll on my strength.
San brings me a breakfast of fresh fruit and coffee, plus a small glass of apple juice laced with a high fiber additive to combat another one of the predictable side effects associated with chemo. The fresh fruit is served at room temperature, which is another consequence of another one of the cancer drugs coursing through my system, the one that disallows anything cold meeting my lips or nose because it could interrupt my ability to breathe. So, at least for the next six months I have to avoid opening refrigerators and freezers, touching water in a sink or from a faucet that is less than room temperature, enjoying cold drinks, ice cream, or even a glass of cold water.
Days four and five following the all-day chemo assault are all about feeling tired. I was forewarned. My strength should begin to recover in the days ahead, but for now I am caught in (with apologies to Milan Kundera) a “bearable tiredness of being,” an experience of my body that is new to me, surprisingly annoying, yet entirely manageable.
Yesterday was Father’s Day and our little family celebrated it with shared good feelings and a lot of talk, the loving kindness we are thankful for so evident in our son Nic, an excellent meal prepared with thoughtfulness and love by Tori with an assist from Alyssa, and, prior to all those late afternoon festivities, my first visitor—our first visitor—from someone outside the immediate family sphere.
Angela Trethewey is my boss but she is also a close friend, and it was grand to see her in her usual good spirits. I think it was also good for her to see me in more or less normal shape, still a functioning person, irreverent as ever, who is neither infirm nor that “different” from how I’ve always been. Angela’s dad had a mad dance with cancer 12 years ago and is still going strong, so I know Angela is familiar enough with the disease to not give up hope as well as to know what to tell others about her visit. That sort of “ordinary report” does important work – the work of talking about someone like me as a whole person, for better or worse, rather than as someone solely defined and tightly constrained by a disease label.
Let’s face it. Cancer is a scary word and scarier reality. While we know that most people do not believe it is contagious, the word “cancer” carries with it a symbolic weight that is hard to bear; it is easier to either deal with at a distance or not at all. That is not to say that people are cruel or shallow or even that they lack courage; merely that confronting mortality via serious illness is not one of those easy conversations people routinely engage in. So, because we have so little practice at it, we lack the essential experience and conversational tool kit for it. And that is why it becomes easier to move as far away from that conversation, from that person with cancer, as we can. We just don’t feel up to it. And, even if we did feel up to it, we seldom know what to say.
We define them as a disease. In so doing, we close off opportunities. We lose their stories. And they lose ours.
Every time I enter the cancer clinic or the hospital I am surprised by how many other people are already waiting there. I know this probably sounds naïve. But one of the advantages of my healthy life has been a lack of hospital visits. Another has been a purposeful avoidance of personal contact with cancer stories.
At the rotten root of both of those sources of naiveté has been my fear of death.
I had my reasons to fear death, although now, given the death sentence I live with, they seem pretty lame. But please hear me out. This is sort of a narrative confession.
San and I went to clinic for round two of the all-day chemo assault on the bad guys. But unfortunately we found out after my blood was drawn that my white count hadn’t quite recovered enough to risk it. So I was sent home.
You know what? That’s fine. Ironic as it is, San and I would much rather err on the side of caution when making decisions about pouring more of that poison through the port in my chest into my bloodstream. In times like these when I pause to think about it, I often find myself onstage in an imagined Monty Python scene of my own making. Here is today’s dialogue (and when reading it, please do so aloud and use the class-appropriate British accents):
Doctor: “It is neither good news nor bad news, but I’m afraid your results show you aren’t quite well enough to be poisoned again.”
Working Class Me: “But I will be well enough soon, right?”
Doctor: “Oh yes, you will be just fine in a couple of days. Then we’ll poison you.”
Working Class Me: “Oh good! Will there be sweets, like last time?”
Tia, the oncology nurse: “We always have sweets for you, Bud.”
Doctor: “I’ve been meaning to talk to you both about that. His blood sugar is a bit high. So we must cut back on the sweets.”
Working Class Me: “But I still get the poison?”
Doctor and Tia: “Oh yes, we promise you’ll get the poison. As much as you want.”
Me: “Well, good enough then. I’ll just be on my way …”