The days were balmy after the intolerably late start to summer. Portlanders were twitchy and edgy, all chatty conversations winding inevitably to the hope for summer to finally make itself known. But no one felt the delay more acutely than Dad, whose temperature had been in the reptilian range. He suffered for the chill, which was an uncomfortable but omnipresent reminder of the chill we faced in our near future.
We lived with this in moments, both sweet and appalling. Shocking, sometimes, but always surprising. We didn’t know where or how the cancer would surface, but it was surfacing, the great Moby Dick of my father’s end.
I was making my peace however I could. Sometimes with grace, sometimes with complete denial, sometimes with a pragmatism that took my breath away.
“You need to make a list of people who will want to know that you’ve died,” I said, in the car as usual.
After the pause I realized it might be a bit unvarnished for 9 in the morning.
But Dad barely missed a beat. “My Rolodex has everyone in it,” he said. “Although I could pare it down some more,” he added, as he mentally crosschecked his friends and acquaintances. Who makes the cut? It’s a thought I’d never considered before. Who would want to know that I died?
“I’ll make you a list,” he said.
The radiation treatment just about laid Dad out for good. We had no idea what was in store for him; since the radiation was not employed to cure anything, we assumed naïvely that it would be less punishing in Dad than in people who relied on it to give them their lives back.
If the radiation gave us anything, it was a deeper understanding of the precarious nature of Dad’s health, in which any outside influence might throw his entire physical being into flux. At the time, I cursed the radiation: for making him weak, for making him tired, for making him ill, for introducing dead taste buds and no appetite which remained his last great pleasure. But as we were looking ahead into the very near, very murky future, I was glad that we knew what was wrought by “treatment.”
Dad had never been under any illusions about his cancer. His doctors had been square with him about his ability to be cured: it was never on the table. In that sense, we’d been looking the thing in the face.
But it was a tricky business now; the clinical trials had been offered and we reviewed them. I had a sense of salesmanship, which did not speak to a good death for Dad but of a research project, selling us a bill of goods that, while serving some purpose in a lab, did not serve the best interests of this person standing (or weaving weakly) before them.
I was stunned at the decrepitude of the patients in the waiting room at the radiation facility. Dad was spry compared to the people who were wheeled into the waiting room for their treatments. People who had no mobility at all, men mostly, were rolled in wheelchairs to wait out half an hour in an institutionally pleasant lobby until their time in the blast zone.
A man in his seventies, a long life relatively speaking, was wheeled in at the same time as Dad’s appointments every day. An orderly pressed the button to open the sliding glass doors, parked the man, put on his wheelchair brake and checked him in. He was exposed in the center of the room; there was nowhere else to accommodate the massiveness of his wheelchair and all the apparatus that kept him ticking.
The orderly left and the man waited.
Bags drained into him to keep his fluids up, bags drained out of him to keep his body from rendering him toxic. IV’s ran here and there, tubing and wires drip-dripping their elixir into his veins for another day, or hour, of life.
“I’m in pain,” he groaned.
I was the only one in the waiting room other than the receptionist, a wannabe bike messenger who despised the feeble people who appeared in front of him.
“Please help me,” he pleaded.
I was behind the patient, poking the screen on my iPhone, the great distancer. He couldn’t see me, but I was witness to this horrible moment of abject and total vulnerability. He was from the VA hospital, one of many men I had seen who had no one in their moments of greatest need. They were alone, in pain, asking for help.
I had no help I could give.
Dad did not sail through the RotoRooter treatment: Dad was supposed to get two stents put in his bladder to bypass urine around his kidneys and to keep him from becoming toxic to himself, but once they opened Dad up, they discovered the cancer had eaten up half of his bladder and the urologist could only find enough room for one.
The doctor called me aside to talk about it. “Does he complain of incontinence issues?” he asked me.
I replied no, that wasn’t one of his complaints.
“I can’t believe it, actually,” he said. “The sphincter in his bladder is completely non-responsive. He really shouldn’t be able to hold his bladder at all,” he said.
“We can chalk that up to willful belligerence,” I said.
He laughed. “He’s gonna need that belligerence,” he said.
I had my phone by the bed, so when it rang at seven a.m., I knew something was awry. Dad couldn’t pee, though the stent was supposed to help with that. He was backing up and it was painful. I asked him how long it had been.
“I’ve been sitting on the pot all night,” Dad said.
Completely exasperated, I admonished him to call me much earlier in the crisis. I told him I’d be right there. It was rush hour.
I cut a neat swath through morning traffic to pick Dad up, but by that point the city was extremely congested, and now I had to find a doctor or nurse to see him at this not-quite-optimal hour. Dad stumbled gingerly into the car; one of the great curses of my being his chauffeur was the bucket seat which swallowed him up and refused to regurgitate him at the end of the trip.
I called his general practitioner’s office; they couldn’t see him until 11:00 that morning. ER’s all over town were full of patients waiting, and Dad was leery of emergency services anyway, having had to rely on them to handle his johnson in other emergencies and finding them less than gentle. I came to a bridge entrance, but it was jammed with cars and hardly moving. I pulled off and drove wildly in the general direction of his urologist’s office, bobbing and weaving through back streets and secret routes, blindly hoping that we could just waltz in and have the urologist magically assist Dad. There were no other options.
This was a problem we’d faced before and I found it more frustrating every time we dealt with it. A procedure that is imperative but simple should not be so hard to attend, but finding a nurse for the five minutes it would take to catheterize him was next to impossible. What if we had to wait until 11:00 a.m? Would his bladder rupture? What if he had no one to bully the medical system on his behalf into attending to his small but desperate emergency? I thought of the cancer patient in the waiting room asking for help from no one in particular.
In any case, I navigated Dad to the safe and gentle hands of his urologist’s nurse, a woman intimately familiar with a light touch, unlike the bullies in the ER. We raced in half an hour before their office opened, but damn if they didn’t step up to help a guy out.
I was surprised every time we visited the oncologist. He did not see what I saw.
I called the oncology nurse a couple of weeks before to discuss what I thought might be signs of Dad’s deterioration. I raised concerns that he seemed extraordinarily weak, that he had edema, that he seemed at a general ebb. I worried that I wouldn’t know when to call hospice. She promised to raise these concerns with Dad’s doctor and have him discuss these things with us during our next appointment, when the next options were to be offered, including clinical trials.
The doctor asked Dad questions about his general health, was he exercising, what were his complaints. Dad ticked them off. I added to the list.
“In general, you’re pretty healthy,” he said. He’d said this any number of times which made me realize two things: Dad had a lot farther to fall and that the doctor had a completely different definition of “healthy” than I did. “Without giving you any kind of definite timeline, in your condition you probably have sixteen months. With certain therapies you could extend that to nineteen.”
He turned to me. “We generally don’t recommend that hospice be involved before a mortality of six months.” I could feel him reading the nurses’ notes about our phone conversation. I felt oddly exposed, as if I was being presumptuous. But Dad seemed pretty damned sick to me. I guess I didn’t know what sick looked like.
The oncologist told us about a clinical trial they could start him on, and I asked about a second one which was going to start a couple weeks later. The trial coordinator came in to explain the main points, and gave us thirteen pages of information to sift through.
I took Dad home, both of us armed with new, interesting information.
I was so often thinking about medical crap that in the case of the clinical trials, I set it aside and forgot about it for a couple days. I tidied the neglected yard, folded laundry, played with Milo, took on the onerous task of cleaning out the coop.
Dad called me. “Did you read about the trial yet?”
I admitted I hadn’t.
“Can you read it and call me?”
“Sure, Dad. What’s up?”
“Nothing. I just need another pair of eyes to read it. We’ll discuss it when you’re done.”
“You got any opinions about it?” I asked.
“I want you to read it first. Then we’ll talk about it.”
The paperwork was full of straight talk about the trial: how long it would last; what was expected of the patient; under what conditions the patient could leave the trial (any and all reasons were acceptable); what would happen first, second, third; whether or not the patient would approve of samples being saved for future research. It was written in blessedly transparent language, unlike much of the medical literature I’d pored over in the last year.
I read it and called Dad back.
“What’s your beef with it?” I asked.
“It doesn’t seem to offer anything to me worth the effort,” he said. “It won’t change anything. I’m still going to die from cancer,” he said.
“Yeah,” I agreed. “The laundry list of side effects is pretty intimidating.”
“I already feel like shit,” he said. “I don’t need them to give me drugs to feel like shit. Not when it’s only maybe going to give me a few extra months. Weeks, maybe. What did you think?”
“Your time is short, and you don’t want to spend it going back and forth to medical appointments all the time. You’ve already got a host of medical procedures you’ll have to endure: PSA tests and Lupron shots, the stent will have to be replaced in six months, regular check-ups from urology and oncology, not to mention your general practitioner. If it was me, I wouldn’t want to add any more to an already full medical docket.”
Dad agreed. “I want to spend my time doing the things I want to do, not sit in doctor’s offices for months. Those side effects sound awful. The radiation was enough for me.”
He was done with all that: Dad closed the door on any more medical interventions.
“‘Talk to friends, family, and spiritual advisors about your thoughts on dying,’” I read back to him. “‘Spiritual advisor,’ ha!”
“If there’s one thing I could gain from the experience, it might be a brief insight about matter turning to energy,” Dad said.
It was profound in its simplicity.