The days are balmy after an intolerably late start to summer. Portlanders, usually sanguine about their weather, have been twitchy and edgy, all chatty conversations winding inevitably to our hopes for a summer to finally make itself known. But no-one felt the delay more acutely than Dad, who’s temperature has been in the reptilian range for the last several months. He suffers for the chill, which is an uncomfortable but omnipresent reminder of the chill we’re facing in our near future.

Our weeks have been long and exhausting, and constantly changing as my father’s body is making its inevitable submission to the cancer which will not be denied. The drugs have pooped out, and while the doctors choose in their arcane and mysterious ways to change tack with his treatment, it becomes increasingly obvious that no matter what they prescribe there’s no fighting the alien.

We’re living with this in moments, both sweet and appalling. Shocking, sometimes, but always surprising. We don’t know where or how the cancer will surface now, but it’s surfacing, the great Moby Dick of my father’s end. I’m making my peace however I can. Sometimes with grace, sometimes with complete denial, sometimes with a pragmatism that takes 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 nine in the morning.

But Dad, unrepentant realist, 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’ve never considered before. Who would want to know that I’ve died?

“I’ll make you a list,” he said.

•   •   •

Two rounds of 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, but to lessen the pain in his bones where the cancer had settled, we assumed naïvely that the radiation treatment 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’s a deeper understanding of the precarious nature of Dad’s health, in which any outside influence will 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 remains the last great pleasure of his life.

But now, as we’re looking ahead into the very near, very murky future, I’m glad that we know what is wrought by “treatment.” Because as his medication wanes into uselessness and the cancer is staking its claim high and low, we need to know what “treatment” means.

One patient was wheeled into the radiation facility at the same time as Dad every day. The man was in his seventies, a long life relatively speaking. An orderly pressed the button to open the sliding glass doors, parked the man, put on his wheelchair brake and checked him in. The man was exposed in the middle of the room; there was nowhere else to accommodate the massiveness of his chair 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 to no-one.

I was the only one in the waiting room other than the receptionist, a wannabe bike messenger who despises the feeble people who show up in front of him.

“Please help me,” he pleaded.

I was behind the man poking the screen on my iPhone, the great distancer. He couldn’t see me, but I was privy to this horrible moment of abject and total vulnerability. He was from the VA hospital, one of many men I witnessed 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 has not sailed through his reputedly benign surgery.  Dad was supposed to have two stents put in his bladder to bypass his kidneys and to keep him from becoming toxic to himself, but the cancer has 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 chock that up to willful belligerence,” I said.

He laughed. “He’s gonna need that belligerence.”

Later that afternoon I drove Dad home from the surgery in remarkably good shape. Perky, a spring in his step. We expected him to be logey and spaced from the general anaesthetic but he woke up as if from a cat nap and I took him home a short hour later.

I happened to have my phone by the bed the following morning; when it rang at seven a.m. and I saw that it was Dad, I knew something was awry. He 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,” he said.

Completely exasperated, I admonished him to call me much earlier in the crisis. My criticism fell on deaf ears since Dad was a bit preoccupied. I told Dad I’d be right there. It was rush hour.

I cut a neat swath through 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 bucket seat; one of the great curses of my being his chauffeur is the seat which always swallows him up and refuses to regurgitate him at the end of the trip.

I called his General Practitioner’s office; they couldn’t see him until 11:00 a.m. ER’s all over town were full of waiting patients, and Dad was leery of their services anyway, having had to rely on them to handle his johnson and catheter 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 waltz in and have the urologist magically assist him. There were no other options.

This is a problem we’ve faced before and I find it more frustrating every time we deal 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 seems to be 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 his minor but desperate emergency?

I think 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 called the oncology nurse a couple of weeks ago to discuss what I thought might be signs of Dad’s deterioration. I raised concerns that he seemed extraordinarily weak, that he had edema, 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 upcoming appointment.

This was the appointment when the next options were to be on offer, including clinical trials. When the time came, the doctor asked Dad questions about his general health, how much 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’s said this any number of times which makes me realize two things: my father has a lot farther to fall and that the doctor has a completely different definition of “healthy” than I do. “Without giving any kind of definite timeline, in your condition you probably have sixteen months. With certain therapies you could extend that to nineteen.”

The oncologist turned to me. “We generally don’t recommend that hospice be involved before a mortality of six months.” I could feel him reading the nurse’s notes about our phone conversation. I felt exposed, as if I was being presumptuous. But Dad seems pretty darned sick to me. Again, I guess I don’t know what sick looks like.

The oncologist told us about a clinical trial, and I asked about a second one which was going to start a few weeks hence. A trial coordinator came down to explain the main points and he gave us thirteen pages of information to sift through regarding what to expect.

I took Dad home, armed with this new, interesting information.

I’m so often thinking about medical crap that in the case of the clinical trial, I set it aside and forgot about it for a couple days. I tidied the sadly neglected yard, folded laundry, played with my son, began the onerous and enormous task of cleaning out the vacated chicken coop. I have reclaimed it after serving the girls their eviction notice, and after several days mucking out guano and dousing the place liberally with bleach, I’m both glad we’re done with chickens and that I constructed such an amazing out-building that it could be easily repurposed for good and not gross. My son is now reading about birds in the newly bequeathed Palazzo di Milo.

The Palazzo will hopefully become our son’s favorite place and a sanctuary in which to become older. I made sure it has all the comforts of a luxe retreat including zebra stripes and pink grass, LED lights and a faux-fur covered trap door. I can do no better. It hopefully stands as a testament to my belief that all kids need a hidey-hole they can retreat to when the chips are down.

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 just 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 blood and biopsy samples being saved for future research. It was written in blessedly transparent language, unlike much of the medical literature I’ve pored over in the last year.
I read it and called Dad back.

“What’s your beef with it?” I asked. I was pretty sure I knew what it was, but wanted him to say it, not me.

“It doesn’t seem to offer anything to me worth the effort of the trial itself,” he said. “It won’t change anything. I’m still going to die from cancer.”

“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 going to give me a few extra months. Weeks, maybe. What did you think?”

“Your time is short, and I’m pretty sure you don’t want to spend it going back and forth to more medical appointments all the time. You’ve already got a host of medical procedures you’ll have to endure regardless: PSA tests and Lupron shots, the stent will have to be replaced in four to 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.”

He agreed. “I want to spend my time doing the things I want to do, not sit in doctor’s offices for months. Not if they can’t guarantee me an experience which doesn’t make me feel even sicker. Those side effects sound awful. The radiation was enough for me.”

I thought about it. “I guess if I was to sum it up, I would say, ‘It seems like a lot of hassle for little gain.’”

We agreed to withhold final judgment until we received information about the second trial, to compare them once we had them both in front of us. We had higher expectations for the second trial because it was the one I had done research on, but when we picked up the paperwork for it, a similar laundry list of remarkably unpleasant side effects was there waiting for us. As we read over it together in his living room, we both had the sense he was done with all that. He closed the door on any more unnecessary medical interventions.

“‘Talk to friends, family, and spiritual advisers about your thoughts on dying,’” I read back to him. “Spiritual adviser, ha!”

“If there’s one thing I might gain from the experience, it may be a brief insight about matter turning to energy,” he said.

It’s profound in its simplicity.

•   •   •

A friend of mine invited us to a barbecue for her birthday and encouraged me to bring Dad. So I did. It was a beautiful afternoon, warm sun cutting through the marine layer and scorching our friend’s grass.

Accustomed as I am to Dad’s slow decline I rarely have a chance to witness the changes as an interested observer. But public outings like barbecues bring it home in a way that doctors offices can’t. There are elevators in the clinics, concessions made for ill people, and patients in far worse shape than Dad.

But as we exited the car, bucket seat threatening to pull him under as usual, I looked at my friend’s house and realized it was trickier than expected. The porch steps were easy enough, but I remembered the stairs out to her back yard were steep. I suggested we go around the side of the house instead, but as we picked our way over the gravel path, I felt the footing as slippery as if I were hobbling myself. Dad tottered up behind and through the gate, where the patio was by this time absolutely baking in the sun.

The guests at the barbecue huddled under the patio umbrella, inadequate to the task of protecting twenty people from the beating heat. I scrambled a chair for my father, but the real estate under the umbrella was priced too high for anyone to relinquish their spot. I wanted to give someone the boot, but relied instead upon civility which would encourage someone to release a seat in the shade for this slightly pale, obviously exhausted man on a cane. But it was no good. And so we sat in the bleaching sun, me getting up to fetch lemonade, him wilting silently with a vulnerable questioning half-smile.

It didn’t take long for me to realize that no amount of our being pathetic would be enough to lobby the hearts and minds of the other guests, so I told Dad we were going inside. He seemed to melt before me, relieved that I was again taking control of a situation he couldn’t believe he was too fragile to master himself. We wandered to the stairs, the ones I had predicted were going to be troublesome on our way inside. I stood in front of them holding Dad’s shish-kabob and lemonade, gazing at them as if they rose like Kilimanjaro instead of four simple steps into a house. “Let’s go around again, Pop,” I suggested.

But he was too tired to listen and forced himself toward the four steps. His legs were shaky and leaden. With no hand rail to grasp, I worried at any moment he would pitch backwards, so I perched underneath him to break his fall. I could feel him struggling against his own frailty as he willed himself up step by step, and I held my breath until we got to the top. Then through the house where only young people dwelled, no reasonably comfortable furniture in sight. One lone chair beckoned Dad and I captured it quickly lest someone come and snatch it from us. Dad collapsed into it with relief and submission.

We sat there by ourselves in the living room, the barbecue a million miles away.

“It’s pretty surprising, isn’t it?” I asked. “Your level of infirmity, I mean.”

“Oh, man,” he said. “Yeah. I just watch my body fall apart as if it’s a television show, sort of detached from the experience. ‘Wow, that doesn’t work anymore,’ or ‘Whoops! I guess that’s gone now.’ I can’t get too excited about it, but it is surprising.”

We didn’t talk to many people, but we were okay. “It’s just nice to be somewhere that isn’t a doctor’s office,” said Dad.

•   •   •

Another day, another minor medical emergency: Dad’s catheter was blocked and it had to be flushed out. It was, of course, rush hour on a Friday afternoon. More calls, more hopes he could see his urologist, but no. Not today.

Instead, a trip to his GP where, at 4:30 in the afternoon the earliest appointment they had was 6:45 in the evening. Two-plus hours with clogged pipes for Dad.

It was about this time my son complained of hunger pangs, which meant he was well past the point of no return–he should have eaten a long time before. We were at a critical moment: no food equals Class A breakdown of a voluble and embarrassing nature. And Dad was slowing filling with pee, but there was nothing to be done about it.

“You want to grab an early dinner, Dad?” I asked, feeling the strange normality of such a statement.

“Sure,” he said. What else was he going to do?

As we walked toward the car, the receptionist told us another appointment opened up at 5:30. Now only one hour stood between Dad and relief. Any little thing helps.

We ate dinner nearby, Dad having to pee, my son blissfully unflappable about the ongoing and ever-changing medical circus, me taking in the wonder of the thing. You just never know where you’ll be when Moby Dick surfaces.

•   •   •

If there’s one thing that disorients me, it’s dealing with outsiders who become privy to our ongoing medical saga. Many of our closest friends deal with it the way we do: it’s just the way things are and we face it.

But others, unfamiliar with either me or illness or death or my father often have unpredictable responses to it that confuse me or make me uncomfortable. One woman hinted that we shouldn’t talk about my father’s condition in front of my son, as if I’ve kept it secret from him. There’s absolutely no way I could keep it from him; too many situations have arisen in which my son had to come with me to escort Dad to the doctor; no-one was available to watch him. Besides, I respect both my father and my son, and that sort of gigantic void of truth would be impossible.

“Does your son know about your father?” people ask me.

“Yeah, of course,” I say.

“How do you explain it?”

“I just tell them he’s sick, he has cancer.” I feel like this is a trick question.

“Do they know he’s dying?”

“I don’t go out of my way to explain the grim details, but he’s picks stuff up about it. It’s normal to him. We’ve never tried to hide Dad’s illness.”

This is strange to me, the sort of hush-hush attitude about my father. For me, it’s my job now. Other people go to work, I take Dad to the doctor. People exude kindnesses and plaudits which make me feel odd; I’m just doing what any decent person would do. You step up. That’s what decent people do.

There’s a curiosity about our situation I can relate to; many people are trying to figure out what they’ll do in similar situations they will face in their own future. But many people’s reaction to my situation seems steeped in fear of the unknown and embarrassment about infirmity in general. I guess I was afraid of it too, before Dad punked out on me. But now it’s just the price of doing business. You deal with it. It becomes a part of life, just like anything else. It’s the absolute opposite of extraordinary: it’s the most ordinary thing in the world.

“Sometimes I’m surprised at how blasé I am about this,” Dad admitted. “I just can’t get all bent out of shape about it.”

This is good since we just got word from both his urologist and his oncologist that they’re recommending a much more intensive round of radiation to blast his prostate directly. The doctors have realized after Dad’s last catheter event that there is so little room left in his bladder that Dad really has no choice but try to shrink the tumors there. This is most unwelcome news, but the alternative seems impossibly more unpleasant than this remarkably unpleasant option.

“I don’t know. Maybe the radiation will shrink me down millimeter by millimeter until there’s nothing left,” he chuckled.

“Nice, Dad. That sounds great,” I snorted.

•   •   •

I’m leaving to pick up my son from his Japanese summer camp. So far he likes it, a lucky break since it gives me just that much more time to help with Dad, or to write, or clean without having to entertain an exuberant six-year-old at the same time. But that could change any point.

We’ve been playing a lot, running around with the dog, fixing up the Palazzo, playing video games. Sometimes the contrast between my father and my son is strange, but mostly it seems hopeful. My father at least had a chance to see the torch passed down to another generation, though he complains about the shoddy stewardship by our generations in handing a decent planet to him. It’s true that it’s not ideal. But our son, his grandson, is a great light rising in the east as Dad is setting slowly in the west.

And Dad is mindful of the quest for a good death, not one full of medical interventions or last ditch zero-hour bids for more time, but of sharing moments with those he loves, me and my husband, his grandson and his friends, but mostly his son Chris who is unable to be here as often as they’d both like. He’s making his peace with the end of things, not fighting the inevitable; he’s drifting with the tides where-ever they take him.

It’s with remarkable aplomb that he’s falling to pieces, the old jalopy shedding parts as he winds down the road. He shrugs as he loses the tailpipe; he waves farewell to the pistons as they blow one by one. I don’t know how I’ll face my own end, but watching him face his makes me realize it’s not that bad.

It just is.

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