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How I Learned of Dad's Illness
5 Oct 1998
I spoke with Dad on the phone in the last week of July, maybe on the Tuesday before his Friday gall bladder removal. He'd been feeling abdominal pain for a few weeks but had high hopes that this pain would soon be gone. I assured him that my gall bladder removal had left me remarkably free of pain and lasting effects, once I recovered from the 8 inch gash in my belly. His surgery would require only a tiny incision and would have him returning home the same day. I thought of visiting Dad before this surgery, or right after, but I think he said he didn't feel much like having company. He didn't seem particularly worried and I didn't press him, other than to say something like, I hope that if you ever feel as if you might be at death's door, that you will let me know. I think I kidded him that I might have a bone or two to pick with him yet. I think his response was an uncomfortable okay. On 31 Jul 1998 Dad's gall bladder came out with no problems and the following day, Mom departed for a few weeks with Betty Campbell, camping through Nova Scotia then visiting Betty in Alabama. Brother Bill would be visiting Dad in Mom's absence, and Dad insisted that Mom not cancel her trip over what looked to be a relatively minor operation. Immediately following the surgery Dad learned that his liver had a large cancer that would probably kill him within a year. He asked the doctor not to share that news with Mom. To his children he would break the news in his way -- in a letter he would send 24 Aug, after Mom returned. The cancer in Dad's liver was apparently descended from the cancerous growth he discovered in his throat in 1996 (see 15 Feb 1996 Letter from John Butler). That growth was said to have been discovered in an early, very treatable stage, and to have disappeared after surgery and treatments (chemo and/or radiation?). I spoke with Dad several times the first week of Aug. He seemed in good spirits, but not much interested in having me visit. I learned later that he'd begun seeking treatment that week and found that all the testing the doctors wanted to do would take more than three weeks before any treatment would actually begin. On the day after Dad's gall bladder removal, he wrote a piece about Graduate School Disappointments (see 1 Aug 1998 letter from John Butler). He sounds a little cranky maybe, but not particularly worried. I think it was around 21 Aug when I heard that Dad's condition was serious. Mom called me sometime that week to say that she had decided not to stop to see me in Phila, but to head directly home from visiting Betty in Alabama. After she got home she called to say that a letter from Dad was on its way (see 24 Aug 1998 Letter from John Butler) -- his way of breaking the bad news. I think when I spoke to Mom Dad was sleeping or otherwise unavailable for comment. A few days later, after reading the letter, I called and learned that Dad would start chemotherapy in a couple days. I think I probably did not speak to him personally on this occasion either. The cancer which had been found in his throat two years earlier had reared its ugly head in his liver, a squamous cell carcinoma, a sizable tumor which had been growing for some time. He was in quite a bit of pain, and had no appetite or energy. Dad was not interested in having company. The following week I learned that Robin had scheduled her vacation to begin 3 Sep. She'd visit Mom and Dad, then head for Maine to visit with an old school pal. She planned to spend two and a half weeks in New England, visiting several spots and spending some more time with Mom and Dad. By the time Robin arrived in RI Dad was in bad shape. His reaction to the previous week's treatment prevented the treatments from continuing. His throat objected violently to the treatment and he could no longer swallow. That weekend he was in the hospital with a high fever. Still the medical report was optimistic for the short term. While we knew that he had probably no more than a few months or maybe a year to live, the doctors said that the throat discomfort could be treated and that he need not expect that all his remaining time should be spent in pain. By Sunday his condition was become more worrisome. The doctors had been waiting for his fever to drop and his condition to stabilize enough so that they could insert a feeding tube and unblock his bile duct. Nancy was scheduled to arrive with Leo (age 8) Fri 11 Sep, and I was prepared to make the trip on short notice. Mom discouraged us (to her later regret) from accelerating our plans and coming right away. There seemed to be a reasonable hope that he'd be in better shape in a few days and that he'd be more able to appreciate a visit. I think we all concurred in this misjudgment. Certainly I could have chosen to go at any time I wanted. Mom never said we shouldn't come, only that a later visit might be better for all. At about 5:30 pm on Tue 8 Sep Nancy called me at work to say that Dad was in intensive care in very bad shape. She would be on a flight as soon as possible. It hit me then that I probably would never talk with Dad again. I called several airlines and found that I could be in Providence within 3 or 4 hours at some astronomical cost. I knew that the train would get me there almost as fast. I could not reach anyone in RI right away, and spent an agonizing half hour wondering which way to go. Finally I called and found Mom at home. She said that I would not be able to speak with Dad that night in any case, as he was zonked out for the night. The doctors had opened Dad up on Tue to put in a feeding tube and try to unblock his bile duct. They found that he had just begin bleeding internally. The cancer had invaded his intestine and was sitting on his bile duct causing the blockage. Mom had just returned home for a short time. She would return to the hospital as Dad had an unscheduled couple hours of surgery ahead of him. I learned later what a difficult decision Mom had just made. When they opened Dad up, they could see his condition offered very little hope. Would continued treatment be the kind of extreme measure that Dad sought to avoid with his advance directive? Mom chose to continue treatment, and I'm glad that she did. I don't think he suffered after that point, and I would have hated to give up too soon on whatever chance there was that we could exchange a few words more with Dad. Mom said at one poitn that if Nancy and I had already arrived and been able to visit Dad before the surgery, she might have chosen differently. Back to Tuesday evening. I left my office at 19th and Arch, walked to Borders and bought a copy of a new book by Linda Lear, "Rachel Carson, Witness for Nature," then provisioned myself with soda, juice, rolls and turkey, before walking to Thirtieth Street Station to catch. By 8:00 pm I was on the train to Providence. I didn't get much reading done on that trip. Not that I'd really expected to. But I wanted that as a fall-back option, in case I should get stuck. I thought a lot about what I might want to say to Dad if I had a chance to say only a few words. I thought of what I might read to him if he were incapacitated for some time. I thought of Robert Frost, whom Dad had met a number of times while teaching at Amherst College. When I was about six Dad took me to hear Frost reading at Williams College where Dad taught for two years after leaving Amherst. I thought of Dylan Thomas, but thought I would have to avoid the trite "Do Not Go Gentle Into That Good Night," however much its content might appeal to me. "In My Craft or Sullen Art" is one that I'd discussed with Dad, after I heard it in a Wichita State performance of the one-act play, "Dylan." I thought too about what I might say _about_ Dad if he were to die soon. I imagined a gathering of kin and old friends regaling one another with tales of Dad's exploits. I would have to try to tell some funny stories, because funny stories were one of the great loves of my father's life. I was a little angry with him for not telling me sooner and telling me more, Dad was not very good at sharing certain feelings, and he shied away from sentimental displays. Ours was not a touchy-feely kind of family. I was a little angry with myself for not going sooner to see him, for not writing more often, for not sharing more, and understanding more, of his life. Robin and Mom met me at the train station late Tuesday night, then Robin (I think) picked up Nancy and Leo at the airport in the wee hours of Wed. By this time, Mom had heard the doctors' report on Dad's second surgery of the day. His situation was grave, but not without hope. Wed morning I think Robin stayed home with Leo while Nancy and I joined Mom in a pilgrimage to the intensive care unit at Providence's Roger Williams Hospital. What a shock it was to see Dad looking so pathetic! I could not help thinking of the miserable faces he drew on his get well cards (Dad generally didn't send greeting cards unless he'd made them himself). A line drawing with a circle for a face, like a "happy face," but with an X for each eye and with tongue hanging out of a downturned mouth. How he would roar with laughter if he could send a get-well card bearing a photo of himself at this moment! Would it be in poor taste for me to request a photograph? I decided to keep this thought to myself for the moment. Dad was bouncing up and down with each breath pushed through him by the ventilator, his skin yellowed, eyes barely open but quite vacant. A dozen bags and tubes surrounded him, and a monitor near the ceiling recorded each heartbeat and a dozen other vital signs. The doctors had pumped Dad full of fluids to try to feed him, but they couldn't get the fluid into a vein so most of it was floating freely under his epidermis, grotesquely bloating his face and hands. The ventilator tube was secured in his mouth by means of tape wrapped around his head, cupping his chin and pulling it to one side. After one visit I was not ready to give up hope, but two or three visits later I felt certain that he would never hear my voice again. Not that this stopped me from trying. Wed night I found Dad's "Complete Poems of Robert Frost 1949," a limited edition #262 of 500. I believe it was inscribed by the poet. During my long walk of the afternoon, I'd imagined that Dad might spent days in a semi- conscious state and that hearing some familiar literature might jog his memory and rouse him more effectively than I could do with my voice alone and with words of my own. I found some notes that may have been Dad's notes from a class he taught or attended. One page showed an early and a late version of one poem (was it "Sitting by a Bush in Broad Sunlight" or "On a Tree Fallen Across the Road"?). I found a list of 16 poems Frost considered his best, according to the 1942 publication "(America's 93 Greatest Living Authors Present) This Is My Best," ed Whit Burnett, Burton C Hoffman, The Dial Press NY. That night and the next I read over most of the sixteen, to myself, silently. I never did find the occasion to read any at the hospital. Here's the list, chronologically:
Friday morning my Aunt Janie came to stay with Leo so that Robin, Nancy, Mom and I could all go to the hospital. We arrived expecting to hear that it was time to discontinue life support. But there were some encouraging signs, and we decided not to pull the plug just yet. Around 6:00 pm we returned to the inevitable. Uncle Bill joined us at the hospital, and shared a few hugs and tears early on with us in Dad's room. He didn't stay long by Dad's bed, but he was in the waiting room when our wait was over. I imagine that Bill thought my family would prefer to be alone at the end. Or maybe he was afraid he'd make it worse for us as he was crying louder than any of us at one point. After hearing the doctors' reports, Mom gave the word to discontinue treatment. For an hour and a half, Mom, Robin, Nancy and I stayed by his bed before the monitor showed the horizontal line that confirmed his passing. The hardest thing for me was seeing my Mom look so sad and lonely. I guess I'd assumed that Dad's departure would be such a blessed relief to her that I couldn't imagine that it would hit her so hard. She's always been so strong and kept so much of her pain to herself. She's been so resilient, such a dependable foundation in my life, that this moment of weakness took me by surprise. I love you Mom and I want to be there when you need me. Make sure you let me know when you need me. Don't wait until it's too late.
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This page written by Dave Butler, Computer Guide |