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Apr112016

The Day I Found Out I was Going to Die

The Day I Found Out I was Going to Die

Casey Dorman, Editor

 

When my cell phone rang it was my urologist on the other end of the phone, calling me to report on the CT scan I had just had after a particularly vicious urinary tract infection. I stood in the middle of the kitchen, my ear to the phone, while my 11-year-old niece whom I had been helping with homework waited patiently at the kitchen table and my wife bustled about the kitchen fixing dinner. “Your bladder and kidneys are normal,” the doctor said, “but the scan found a large mass in your pancreas.”

Pancreatic tumors are fatal, everyone knows that.

“It’s about 3X4 centimeters and takes up the whole head of the pancreas,” the young Vietnamese doctor went on. “Your primary care doctor will be calling you to tell you the next step.” I closed the phone and walked over to my wife and put my arms around her and pulled her close.

“What’s wrong?” she asked.

“The CT scan found a large mass in my pancreas.”

She looked up at me, alarmed. “Are they sure?” 

“That’s what he said. My regular doctor is supposed to call to tell me the next step.”

“What’s a mass in the pancreas?” my niece asked. 

“Never mind,” I answered. It’s just a medical term. Everything is OK.”

All I could think of was how my wife was going to handle losing me. I’m 14 years older than she and I cursed myself for being so selfish that when we’d married I hadn’t thought about the years of loneliness she would have because she’d married someone who inevitably would die well before her. I was 73. I knew I was in that age range where something was liable to happen to end my life, but I’d thought I had at least 5 years – my father died of cancer at 78 years of age.  I didn’t expect to live forever, despite being in probably better than average health and physical condition for my age, but I hadn’t expected to die now.

The phone rang again. It was my PCP. He repeated the same information that the urologist had told me with the addition that the mass was of “mixed texture” and that I should call to set up an MRI as the next step.  “It’s most likely cancer isn’t it?” I asked. “That’s a concern,” was all he said. I called immediately and set up the appointment for the MRI. The earliest they could arrange was two weeks away.

For the next five or six days, my wife and I clung to each other and tried to reduce our anxiety. She voiced the hope that the CT scan was just wrong, or perhaps they’d mixed up someone else’s with mine. Both of us went to the internet to see what we could learn—it was all bad: the best predictor of the malignancy of a pancreatic mass is its size. 3X4 centimeters is enormous, verging on inoperable. The likelihood of  5-year survival with a tumor of that size is about 1%; most people die within a year. Surgery, if possible is painful, dangerous, and not usually successful in curing the cancer. The more each of us learned, the more depressed we got. “But I have no symptoms,” I kept saying.

“It’s possible to have no symptoms, despite a pancreatic tumor,” my wife answered, reading from her smartphone.

After 5 days or so, my outlook changed. There were things I had to do. I got out all my retirement plans and my life insurance policy, read each carefully, and then called each to ask what steps my wife would need to take after I died to receive the payments she would need to support herself (although she still worked and repeatedly told me not to worry about such things right now). I prepared a list of instructions with phone numbers for her to call for each plan and policy. What worried my wife most were the publishing ventures in which I had become involved since my retirement. I had gone from self-publishing my own novels, to publishing novels and books of poetry by others and I was publisher and editor of a literary journal, which I had started 7 years before and which had become quite successful and received multiple submissions daily. The next two quarterly issues were already in place in terms of choosing the poems, stories, art and essays for each. The authors had already been informed. My wife knew nothing about how my publishing or journal businesses worked. If I died, wouldn’t there be legal complications, lawsuits from upset writers who expected to be published, royalties owed to authors, she asked.

My wife was right. I wrote every author, poet, artist and essayist whom I had told would have his or her work published in my journal and told them I was ill and closing the journal and would not be publishing their work. With one or two exceptions, they were understanding, even concerned about my health. I announced the close of my journal everywhere that it was advertised. I canceled my appearances at a large literary conference and two upcoming book fairs. I transferred the books I had published back to their authors and arranged to have all the proceeds from the books go directly to them. I had each sign a termination of my contract with them. They were gracious and more worried about my health than about their books. Then, given that it was March, I prepared all the year’s taxes. I was too busy to worry about my health and I felt good about getting so much done in so short a time.

After the MRI there was a week-long wait to hear from my PCP that the mass was present on the MRI but that it was confined to my pancreas, did not seem to be blocking any ducts or vessels and my blood tests had indicated no interference of function either in the pancreas or my liver. He told me to set up an appointment for an endoscopic ultrasound and probably a biopsy of the mass with the gastroenterology department. They gave me an appointment for two weeks later.

It had now been three weeks and lots of things were going on in my head and between my wife and I. We decided that, if we only had a short while before I either died or was incapacitated by surgery or chemotherapy, then we should do some things we’d never done before or wished we could do more often. We took day trips: to Venice Beach one day, to Santa Monica Pier another day, to Beverly Hills for   lunch. We walked on the beach in Newport Beach, where we lived, and in Laguna Beach, down the coast. We went to dinner; we went to my favorite sports bar and watched the NCAA tournament. We followed the presidential primaries on CNN and we found a TV series (Mr. Robot) of which we’d been unaware and watched all ten of the first season’s episodes in one week.  I had recently completed a novel and had sent it to a number of agents and small presses. I really liked the novel and I decided that I couldn’t afford to wait until someone accepted it, given I had no idea how much longer I’d live, so I decided to self-publish it. Then I resumed work on a new novel I had abandoned when I first got the news of the mass in my pancreas.

My wife had her work to distract her and I went back to my routines of gardening, taking long beach walks, lifting weights and helping my two nieces, one in grade school, the other in college with their academic assignments. Every time I started to think about my health and what would come next, I reminded myself that I probably had less than a year to live and might begin debilitating treatments after the next exam and biopsy, so I needed to be sure and complete everything that required me having full use of my capacities while I still possessed them. Dwelling on the possibilities with regard to my health was useless and actually provoked more anxiety than ignoring them.

Prior to my retirement and entry into the field of literature, I had been spent more than forty years as a clinical psychologist. Despite the emphasis in my field on the usefulness of talking about issues and examining the feelings associated with them, I never had bought into that philosophy as a coping strategy. I’d always felt that just slogging ahead and only thinking about what bothered you in order to figure out how to combat it made more sense. My wife coped differently. She continued to pore over medical sites on the internet and wanted to share what she had found with me. Since most of what she’d found was about the bleak outlook and eventual pain associated with my condition and its various treatments, I didn’t want to hear about it. I told her I preferred to accept the fact that I had a limited lifespan and wait until the doctor told me what my options were. Going through the options based upon what we could learn on our own, even if it was accurate, was disruptive of my coping style of not dwelling on my condition. I’m afraid that my reluctance to talk about my condition or to listen to her thoughts about the various directions the illness could take, gave my wife no outlet for her anxiety. She had to cope more bravely and silently than she should have. Thankfully, she had some good friends, one of them a doctor, with whom to talk.  What my wife and I did share were our mutual feelings about needing to weigh the advantages of possible interventions in term of extending my life, with considerations about the quality of that extended life. Both of us agreed that a shorter, but less incapacitated life was preferable to a longer one with little gained except more months of pain and incapacity.

I found that I was rarely anxious, although every time I started to feel too good, I reminded myself that I most likely had a fatal tumor growing inside me and that I would not live much longer. Nevertheless, my typical coping style of thinking about the present and what I had to accomplish as well as my sense of humor, which I seemed unable to suppress, kicked in and served me well. I remember telling some colleagues, who were aware in a general way about my health issues, that so far I’d made as much money publishing this far into the current year as I had all of last year. “Of course, it’s still not enough to live on,” I said. Then thinking about what I’d said, I added, “of course that depends on how long I live, so on second thought maybe it is enough to live on.”

I did have a couple of epiphanies during these weeks of waiting for the final verdict on my health, and life. First, it was absolutely clear to me that nothing mattered as much as the peace of mind and future security of my wife. Our relationship was more central to my life than any of the writing, publishing or anything else with which I had occupied myself for years. Second, I was satisfied that my relationship with my grown children was solid and they were both in good shape with their own lives. One thing I was finding was that every interaction I had with those I loved was deeply satisfying to me. I was lucky to have no rocky relationships at this time in my life. Finally—and this was a total surprise to me—I found that my Atheism, my lack of belief in God or an afterlife was a comfort to me. I’d either progressed rapidly through, or skipped entirely most of Kubler-Ross’ stages of dying. I realized that this was probably because of my Atheism. The denial stage had been short-lived, if present at all, although my wife had certainly gone through it at first. I never did feel any anger. That’s supposed to be the “why me?’ stage or the “this isn’t fair” stage. I just felt that it was me because I was human and I was 73 years old. I hadn’t tried to bargain for my life (who would I bargain with?), I hadn’t prayed for a miracle (Who to? I’m an atheist, remember. Besides, I figured that would be useless and might give me false hope). It’s not a Kubler-Ross stage, but thinking about what would happen to me after I died was also not something I spent any time on either. Nothing would happen to me, except I wouldn’t exist and the important thing was to make sure those I cared about were taken care of. I had been depressed (the fourth stage) for the first several days, although my anxiety had been more prominent and I remained aware of making an effort to keep my anxiety in check. So far as I could tell, my anxiety was almost entirely related to two things: my wife’s well-being after I died and the threat of having false hope. I found acceptance of my mortality easy, and I didn’t want to jeopardize the peace it gave me by grasping at straws that would turn out to be nothing but wishful thinking.

What I did do with my time and my thoughts was to think about what my wife and I wanted to do most with whatever time I still had. We both embraced the idea of planning a short vacation, making an assumption that, since I was still symptom-free, my demise was not going to be immediate and I might even have time before or between any treatments, should I have them. We decided that we’d go to Ireland, where she promised to join me in drinking in the pubs and visiting the theaters and university areas (she does not drink at all, so this was a major concession on her part). If we wouldn’t have time to take a trip to such a distant destination, we discussed all the California coast locations we’d like to visit for a weekend.

The time had come for my gastroenterology procedure. It had been   5 weeks since the phone call that had informed me of the pancreatic mass. This was to be the ultimate diagnostic test: a closer visualization and a biopsy. They would do this by running a tube down my throat into my stomach and somehow making an ultrasound recording of my pancreas (and other organs) and snipping off a bit, if necessary. The gastroenterologist first came in to explain the procedure to me. I reminded him that I really wanted the mass biopsied. He told me that he’d looked at the CT scan and it didn’t look like a mass to him. It just looked as though the head of my pancreas was larger than normal. I was shocked. This was different than anything I’d heard so far. But my good sense kicked in and rather than hope, I just thought, “let’s do it—do the procedure.”

They did it. It was painless, as I’d been told it would be. The sedation knocked me out. When I woke up in the recovery room, I was told that the doctor would be in shortly. I asked them to bring in my wife so she could hear what was said. I was still a little groggy from the sedative. My wife came in and then the doctor appeared. He told me that there was no tumor to be found. My pancreas head was larger than normal, but that didn’t seem to be a problem and there was an enlarged duct within it, but that too was benign. He hadn’t biopsied anything because there was nothing to biopsy. I could go home, I was normal and I didn’t need any more tests. Three days later my PCP emailed me the same information. My pancreas he said, “is NOT a concern.”    

My wife and I were stunned by the turn of events. In a matter of hours, I’d gone from being completely prepared for death (but who really knows?) to being given a clean slate of health. I’m still 73, so a clean slate of health is relative. I felt like I needed to thank someone, although I wasn’t sure what to thank him or her for. After all, my fatal illness had actually never existed. I had a strong urge to thank God, despite my Atheism, although I told myself that such thoughts were a reflex from my religious childhood and would be addressed to no one but a holdover corner of my own mind. But after an experience such as this, I felt as if I had to thank someone. I thanked the doctors, although they hadn’t actually cured anything and in fact, the whole experience was based on a misinterpreted set of test results. But better to have followed up on suspicious test results than to have ignored them, so I was still thankful to them. I also felt thankful to, and I hope I remembered to thank each of them, those who wished me well and even those who prayed for me. Their prayers may not have changed my medical condition, but such concerned care certainly made me feel better during my time of stress.

It’s taken some adjustment to get used to not having the blade hanging over my head anymore. My wife feels the same way. We both keep waiting for the other shoe to drop. There was a certain freedom in thinking that I only had a little more time to live so I should do what pleased me most. We both agree that, although there is no longer any specific reason why I will die soon, I might… or she might. Life is fragile and unpredictable, and at a certain age (probably younger than either of us is now) the best thing to do is to enjoy whatever is available to enjoy and bring as much fun and satisfaction into your life as you can… right now.  The trick is not to be so caught up in daily tasks that we forget this lesson. I made the decision not to  resume publication of Lost Coast Review, my literary journal, since I was enjoying the freedom of being relieved of the duties associated with it, and I wanted to be able to focus on doing things with my wife. She was happy with my decision. I will still write, but my publishing career, except for self-publishing, is at an end.

And by the way, my 11 year old niece, whom we tried to shield from any further discussion or worry about my health, and to whom we never mentioned the word cancer, for fear of worrying her, was simply told “Uncle is not sick anymore” after we got the good news. She nodded and said that was “good.” Later in the day, when she brought her friend from next door over for a snack, she said to my wife, “Oh, I told my friend that my uncle doesn’t have cancer anymore.” 

 

 

Reader Comments (1)

Very interesting! And children are often more intelligent than other adult members of their families.

June 26, 2016 | Unregistered CommenterKirtiti Sengupta

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