In early January of 2003, I was at dinner with Martina, who is now my wife, when I noticed a lump on the right side of my collarbone. It felt tough and nodular, but there was no pain. Martina and I tried to have a normal dinner, but concern got the best of us, and we dropped the rest of our evening plans to go home and call the doctor. During the drive home, I discovered another lump on the right side of my neck, just under my jawbone. My overbooked H.M.O. doctor could not squeeze me in quickly, so I saw a nurse practitioner a few days later. He felt the swollen areas, pushed and prodded, checked the rest of my body, and asked me a series of questions about my sexual history. I answered with the sobriety of a confession I would have entrusted to few priests, and then I asked why. More tests need to be done, he said, and the lump on the collarbone is particularly worrisome. I wanted to know if he was being indirect or I was being overnervous, so I pressed him: what’s the worst it could be?
Perhaps an indication of H.I.V. or cancer, he said. This was the beginning of the dislocation.
His hand on my throat brought me back to the moment. Your doctor should see you very soon. It could always be something minor or just a fluke.
This was the pass I needed to get into my primary care physician’s office a few days later. This session was a carbon copy of the first, but the doctor would not speculate on what the problem might be. I was referred to specialists at Brigham and Women’s Hospital in Boston for a needle biopsy.
Two doctors saw me. Sticking needles into the swollen lumps, they drew many blood samples. It was a bizarre sensation, having to donate bloodfrom my neckseven or eight times. They wanted to look at the slides while I was there, before sending them on to the lab. They had me pass the time by posing for a series of X-rays to scan for various diseases.
A half hour later, they came back expressionless, and we all sat down together. One spoke: We think we see Hodgkins cells. We’re going to send the slides on for further analysis.
Hodgkins? Who was Hodgkins, and what was his or her condition? It is a cancer of the blood, they informed me. This was their first take on the samples, and there would likely be further tests. Martina was called in, and when they told her, she gripped my hand. They immediately said that Hodgkins disease is often survivable if detected early, that it is one of the best cancers to have. When the doctors left, Martina and I held each other in the silence of an enormity we found hard to name.
She could name it better than I could, however, because her brother-in-law died from lymphoma several years ago. As I changed into my street clothes, she conferred with a friend who was a resident in the laboratory. The next day he called to say that after studying the slides, it looked to him like Hodgkins, and he gave us advice and encouragement. Martina cried while talking to him, and in the slowly growing publicness of my disease, I began to feel its reality. The next day my doctor called to say that the laboratory had decided on a preliminary diagnosis of Hodgkins; I should come in and discuss it with him.
I was alone in my apartment when that call came. I thanked him, set up an appointment, and sat down on the floor and wept, raging at this kidnaping of my life, this free fall. Then I called Martina. She was steadfast, talking about how survivable Hodgkins is and how much she loved me. We were going to be scared together. Then I called my parents and a few close friends, mostly Jesuits, the tumult within me reducing me to tears with each call. Their tenderness was like oxygen. I was in a state of suspended animation. There was no time to learn my new identity. Already I was relating to the world as a man with cancer, and like the aftermath of the sudden Midwestern twisters with which I grew up, you cannot outrun the storm. You can only accept what will be overturned.
For many weeks, Martina and I prayed, consulted and searched the Internet for Hodgkins until we had thoroughly confused and frightened ourselves, and waited for the next big stepsurgery and a thorough biopsy, a real chunk of my flesh for the doctors to analyze. I would conclude those nights sitting cross-legged in front of my home altar, in renewed disbelief, with no words for God except occasional cloudbursts of tears that left me hunched over and fists clenched, demanding life. The only prayer I could formulate was to accept what must be accepted. This was the only way I could allow for and hope beyond the reality of the cancer, to refer it raw to God.
By the time of the surgery a few weeks later, I was just beginning to consent to the new reality, even as I had adopted the swaggering phrase of a friend, that I could beat this cancer. I was buoyed by a colleague who told me that his sister was a survivor and just had a cancer, schmancer party. Still, I met with an oncologist who briefed me on treatment, possibly to begin a few weeks after surgery.
Then my dislocation got dislocated. A few days before surgery, the swollen node on my collarbone suddenly diminished. This was inconsistent with Hodgkins. Then immediately after surgery, while I was still groggy, the surgeon told me he could find no swollen nodes in my neck, only inflamed tissue, which he removed, leaving an incision that is still visible and a little Frankensteinish.
My doctor called to tell me that no Hodgkins was found in the biopsy, only an unusual fungus. Another specialist decided that it was a soil fungus, caused by an abrasion. Given the scope of this reversal, I decided to arrange a second opinion. This is no easy task if you are on managed care. It also has clearly elitist contours. (I was able to get the process going only because a relative knew someone at Harvard Medical School who was connected to a cancer hospital.) Even after lining up the doctors who would re-evaluate my entire process of care, I still had to fight my insurance company to cover it. In the end, it took four months to get all my slides and files sent. By October 2003, however, my second opinion team judged that I indeed had contracted a fungus, perhaps from an animal scratch, and not Hodgkins. Life kept going: I was married and was granted a year’s deferment from a new teaching position at Santa Clara University.
But what really happened? How did no fewer than five doctors, including experts, see cancer in me and then not see it? And if I did not have cancer after all, had anything changed?
Only now canI begin to answer that, and in only a preliminary way. The reordered relation to myself and others for a few intense months changed me, and I am beginning to see how. The ordeal both tested and melded Martina and me, calling up a decisiveness from each of us about our relationship, initiating us into an appreciation for our fragility and into a tenacious commitment. And having begun a surrender to God of my memory and willthat is, the plan I had for my lifeI could not suddenly grab it all back. One consoling insight was that because I had already made a decisive difference in the lives of some of my students, I did not need to be concerned with a shortened career. In prayer I had found that representing God to one other person was already enough work for a lifetime and consolation for all that might never be achieved.
My ambition has also been altered. While I am as passionate and tempted to overwork as ever, the invitation to consent to die at a young agewhich, if it did not come from God, could still be answered toward Godbrings me now a certain spiritual indifference. My work is most my own when it respects and elaborates the fragility and tenacity of people’s everyday lives.
I do not think I can now make myself need to make anything of myself. Dealing with life as it presents itself, day to day, offers the only hope of making every day a spiritual exercise. And it must be done without arrogating any personal right to security or to having things make sense. It was only after the cancer threat that I began to understand the statement made by Bill Murray’s character in the film version of Maugham’s Razor’s Edge: There is no payoff. One cannot attempt to live well while presuming there are rewards for good living. And while God does not send apocalypses, they can still be referred to God. One can hope to consent to God even if God did not pose the request.
I have now had a diagnosis no one wants, and a diagnosis everyone wants. Trying to make of this ordeal a spiritual exercise has meant accepting the strangeness of my health as a sign from the incomprehensibly strange God in whom my thriving is placed, and to whom I can refer this now guilty, now gladsome gift of cancer avoided. For now I am not a man who has cancer, but one who thought he had itwith God.
