The Bad Year and the Good Friday
Evil Incarnate. Those were the words that came into my mind as I looked at the MRI image of a giant tumor of irregular borders and varying densities spreading near the geometric center of the brain. The natural history of this tumor would be progressive disability, loss of intellect, coma, and death within a few weeks.
Treatment plans were nearly as different as the number of neurosurgical centers, since at that time the long-term outcome studies for the various treatments had not established the best therapy. Outcome was guarded, depending not only on treatment plan, but also on the pathology of the tumor cells, which could only be determined by biopsy and spinal fluid analysis.
Evil Incarnate is a pineal area tumor. The most common variation in a patient like this teen-age boy would be a germinoma, something familiar to me. But germinoma was not the first word that came to my mind.
Because this time the MRI imaged Adam, my 16 year-old handsome son with the blond crewcut and the gymnast’s body, and the poet’s heart and mind.
The words had been forming in my unconscious for the previous five months. My wife, Mary, and I still dealt with the aftermath of the abnormal mammogram, the needle biopsy that diagnosed the cancer, the bilateral mastectomy with node dissection, and the subsequent chemotherapy every two weeks. There was still one more scheduled chemotherapy session at the time of our son’s MRI.
Oh yes, she had a good prognosis. But the estimated 90% five-year survival for this size and type of tumor was the kind of statistic that sounded so much better when it was about someone else. 90% sounds so good when it rolls off our doctor tongue. But the first thought I had as the patient’s husband was: That’s not good enough. I did not want to see my wife with a 10% mortality of the next five years. She would have been safer in the front lines in Viet Nam. And what about the next five years, and the five after that?
No, cancer with a good prognosis is not good. It is better than cancer with a bad prognosis, but it is not life simply going forward. It is facing mortality. It is Mary bargaining with life and death at stake: I’ll trade the violence of surgery and the poison of chemotherapy for more days in this time-space continuum on this planet. I do it for the sake of those I love, and who love me—for my children and husband—so that they will not miss me when I am gone, at least not for a long time. By then they will be older, and it won’t be so painful. And I know how painful it is from my father’s death when I was 12, and how I learned that, heaven or no heaven, dead is dead and he was not there and is not here, and I do not wish my children to know what it is like to have a parent die while they are still children. So bring it on. Bring on the scalpel and the scars, good-bye to those symbols of my sexuality. Bring on the drugs and the nausea and the hair loss. I will do what I need to do to fight for life, because I am not fighting only for my life; I am fighting for my children.
Mary and I hung onto our teddy bear called Good Prognosis, pushing down our fears, re-assuring our children. We fought for normality, pretending that life simply went on, and we were doing a pretty good job of it. Then I saw Evil Incarnate.
Looking at that image, I wished for the first time that I was not a neurosurgeon. I wished that I did not know what that image represented. I wished that I did not know what pain surgery caused. I wished that I did not know the risks: visual loss, intellectual impairment, paralysis. I wished that I did not know what it looked like to die from pineal tumors. And most of all, at that moment, I wished that I did not have to be the one to tell my son and my wife.
The next week, Adam had surgery. The following week, Mary had her last chemotherapy. the subsequent week, Adam started radiation therapy. The next month Adam started having pain in his abdomen. The next month he had another operation to remove an infected shunt. Each day his temperature would spike to 1040 F, and twice daily a nurse would come to the house to administer an IV infusion of antibiotics. I thought he would die.
Then, the bad year was over. By January we were done with treatments. Mary and Adam started recovering physically, but had been left with hard consequences. Mary had lost her figure, and Adam had gone from being a gymnast to a kid who couldn’t jump high enough to get his feet off the ground.
But we were okay. We had a good prognosis. We were healing. We would get better. We went to school, we went to work, we went to church. We ate, and slept and went to the movies and read books and had birthday parties. Life would go on. We were sure of it.
Or at least this is what I was saying. I was the cheerleader. When Mary or Adam expressed their sense of loss or concern for the future, I would grab the teddy bear named Good Prognosis. I would wave him in front of them and pet him, and hold him up high, and I would say, Everything will be okay.
But everything was not okay. Mary and Adam both experienced a profound sense of loss from who they had been to who they were. Double vision never left Adam, painful scars never left Mary and the scars were more than skin deep. We had a new household resident named Fear. Because from that time forward, a cough was not a cough; it was metastatic cancer. A headache was not a headache; it was a recurrent brain tumor. Weariness or nausea brought the deja vu of chemotherapy.
Time does not heal all wounds, but at least it allows time for the debris of life to cover the scars and make some bad things easier to forget. Fears without foundation become more rare. A cough became just a cough, a cold became just a cold, a headache became just a headache, and double vision is just something that happens when one gets tired. The pain and stiffness in Mary’s scars eventually faded and she got clothes that accommodated her new figure. Adam’s hair grew back, and although he was never again a gymnast, he could hike the Appalachian trail and play chess and go to college. If we learned any one truth about our purpose of life it was that the most important thing was to love each other, and be loved. For without that, our lives were not worth the battles it took to live them.
Both Adam and Mary were depressed during their recovery. Adam with the resilience of youth perhaps less acutely, but Mary had periods of tears, self-imposed social isolation, feelings of hopelessness and an inability to plan for the future. I had to learn that sharing grief is more important than fixing grief. And she had a Palm Sunday experience when God directly intervened, a story she tells much better than me, and she started getting better.
Then, oddly, as she became less depressed and Adam resumed the trajectory of his life, and we all returned to something like normal, I became chronically depressed.
I had always been a fix-it guy. Why else go into medicine and surgery? Fix the problem, save lives, alleviate pain and suffering, prevent disability–that was what it was all about. But now I had just learned that all fixes were temporary, and I could not shake off the implications: we have no control, death is inevitable, and we are the dust and my accomplishments are trivial.
I survived by working, but now I never had the illusion that on a good day I saved a life; the best I could ever do was to prolong one. I distracted myself by learning to draw, trying to play the saxophone, and playing golf. I learned to be a better listener to my wife and children, and to be around more, to be a better dad. I would like to think that I was a more compassionate physician with a deeper understanding of my patients’ suffering.
But my heart was heavy, and I simply waited for the next day of darkness.
One Spring, on a Good Friday, I got home from work by mid-afternoon. No one else was home, and I went into our back yard to do nothing but feel blue. I reflected on the fact that it was the day that even Christians celebrated death. I tried to think of the things that everyone knows for sure, the things I could know for sure. There must be solid ground. Of what could I be certain?
Death and taxes, of course, but the inclusion of taxes is more a matter of humor than philosophy. Death then, for sure. And time, space, matter, and energy. But time ticks on without any end in sight. Space is infinite. Energy is simply another form of matter, and matter is mysterious, understood only by mathematical models that give us illusions sometimes of charged particles or sometimes of energy packets, or sometimes more bizarre forms predicted by quantum physics. And now we know that for any particle to be defined in our universe it passes through the Higgs field to become real.
In other words, we live for a short time in a universe as creatures without understanding of our basic make-up or destiny. We are dust.
Then I remembered a book from my youth. The title of the book was “Your God is Too Small” by J.B. Phillips. The problem now may be that I imagined God as too small. I tried to imagine Him bigger. Our human concepts of time, space, and particle physics, lead us toward infinity; is it such a jump to believe that we are surrounded by eternity?
I saw a vision of God creating a universe and writing the laws of both quantum physics and relativity theory. And furthermore, a God capable of creating other universes with other laws. I envisioned the mind of God, the unfathomable, immense mind of God the ultimate Creator whose thoughts become our reality.
And in this mind of God, I am a thought. His thought. His creation. Infinitely tiny compared to the grandeur and complexity of the universe, but still I am a purposeful thought in the mind of God. And if we are surrounded by eternity, is not existence in the mind of God a kind of heaven in itself?
That was my Good Friday vision. Life has purpose because God has created me. I am His thought now and into eternity.
That was when my depression lifted. I was ready for resurrection. I was ready for Easter morning.