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Mousecanceheimer’s

Tig Notaro famously did a stand-up routine in which she announced she had cancer. It was lauded as one of the most incredible moments in stand-up history, and she was extolled as a pioneer in comedy for really working the fine edge of the tragedy + time = comedy equation many comics venerate as the best method of joke construction. I’ve listened to the routine — it’s as good as it’s rumored to be. Better, maybe, because of Notaro somehow putting into the fewest possible words the absurdity of human life in an undeniable way. A laser cut around the heart, but in the shape of a fart.

In this magnificent routine, Notaro jokes that people always say that “God never gives you more than you can handle,” and then goes on to imagine the angels watching God handing down Notaro’s few months of life, questioning God’s sobriety: in just a few months, Notaro almost died from an intestinal infection, her mother died in a household accident, and then she was diagnosed with advanced breast cancer in both breasts. The space between these events was long enough for her to make the phone calls necessary to tell anyone that one of the things had just happened. It’s preposterous. And inexplicably shitty.

The routine struck a chord with me, because I also endured an hilarious cataclysm of personal ruination. Nowhere near as destructive or incalculable as Notaro’s, but let’s be honest: nobody’s shit compares to anybody else’s shit because when it’s happening, it’s happening to you, and you experience things how you experience them. As I write this, I’m aware that anyone could be writing it. It’s something to keep in mind when the lady in front of you at Walgreens is writing a check or the car behind you would like to attempt vehicular coitus with you at 70 mph on the freeway. Trouble is ordinary. Anybody could write this story.

So, mine is ordinary, too, is what I’m saying, but it’s mine, and I get to tell it.

Five years ago my father, who had been more a character actor than a lead in my life, started being really interested in hanging out, and talking on the phone. He started calling me five, six times a day, at work, in the wee hours, to discuss terrifically random things, over and over. Why he couldn’t access his checking account online, how Verizon messed up his phone and deleted his messages, the relentless and cruel machinations of the one cashier at Walmart that really didn’t like him. At first I thought I had finally won the unwinnable prize: a relationship with my father. He needed me, to talk to. He even started to visit me. But he made strange mistakes, coming to visit me in November for a very important appointment, and leaving the morning of the appointment to visit his cabin in the woods, which had been locked for winter. He washed meat-thawing dishes with cold water and his fingertips; he drove to get a pizza from a pizza place and walked a mile home, leaving his car; his house was wallpapered in illogical notes and reminders, some directly beneath other exact iterations of the same reminder; he could not tell me whether he had purchased or was renting his home. Within months, he was diagnosed with Alzheimer’s disease, and we went from casual, baggage-laden father and daughter to legal ward and guardian. I don’t know if you’ve ever attempted to care for someone who has been cruel to you, but it’s hard. Even and possibly especially if that person has also been really wonderful to you. As a force magnifier, my father is brilliant, rebellious, and very impulsive, three characteristics which, coupled with Alzheimer’s disease, make for a terrifically lively day-to-day. I’ve recounted to many people that one of the top ten things a guardian of a person with Alzheimer’s never wants to hear is the delighted voice of their beloved assisted-living resident ward calling in the middle of the work day and saying, with a mixture of mischief and triumph, “Guess where I am?” JESUS. (Don’t get mad. I’m not swearing, I’m shout-praying. It’s more powerful.) I don’t need to tell you all the other permutations of grim this responsibility imposes. Whatever you’re imagining, you’re right.

About a year into this surreal and cataclysmically traumatic adventure (if there is a dystopian theme-park out there wondering what to name your rollercoaster, you’re welcome) my husband, who had been diagnosed with food allergies causing a host of digestive symptoms, started to have a lot of pain in what he thought was his prostate. He lost a lot of weight — ten pounds or so — quickly, without trying, and started feeling like he had to go to the bathroom all day long. One day, while getting ready for work, I discovered my husband had committed that most egregious of spousal sins: he’d failed to flush the toilet. Ordinarily, I would pretend this had never happened, to protect the sacred pact between us in which he pretended not to hear me fart, and I pretended no one pooped. This time, however, I saw only blood and mucus in the toilet, so I asked my husband later about it. He said it had been going on for a while — that it was no big deal, and he had mentioned it to his doctor, who he was scheduled to see in a few weeks. But a few days later, he was in too much pain to work. He got in to see another doctor, who said he had prostatitis and prescribed an antibiotic. It seemed to help. At his ensuing appointment, his own doctor recommended a colonoscopy, just to be safe.

In the intervening two weeks between appointment and procedure, two things happened. First, I took my father to his then-annual neurology appointment at the Mayo Clinic. The team of doctors there ran him through the usual series of tests — some clinical, most behavioral, and sat me down to tell me some hard news: my dad needed ’round the clock supervision. His disease had leapt forward, and the lead neurologist was concerned for his safety, living as independently as he’d been living. He needed memory care.

I don’t know if everybody knows this, but care for cognitively impaired seniors isn’t like hotels or apartments for the rest of us. First off, it’s more expensive to rent an Alzheimer’s room than it is to stay in a penthouse in the Trump Tower (but not as yucky). Like, $6,000 a month, for starters. So, getting that kind of hay mobilized is a whole thing, if you’re not Scrooge McDuck or a real human billionaire (and if you are, why? People are starving and you’re not better because you’re rich). Next, as grim and despair-soaked as these accommodations necessarily are, there are scores of people queued up to rent them. The waiting lists for these units are often years long. Thank goodness there are so many fewer Baby Boomers than any other generation, or this next twenty years would be a real shit-show, right? Anyway, I’d had my father on these lists for a long time, but there was not a single place I’d spoken to that had a drop-in policy, whereby one might, say, learn from their neurologist that they needed memory care, and then just drive to said memory care and have done with it. That’s not how it works. So my father came and stayed with my sister, while we began a much more frantic version of our home-seeking process for Dad. Ask her sometime for a Quick List of Stuff Dad Set on Fire.

Next, at approximately the same time as the dad relocation program, my husband and I discovered our basement was now home to a booming population of deer mice, who’d elected, upon arrival of the cooler fall temperatures, to winter indoors. At first, we attempted a catch-and-release strategy for the mice, believing ourselves to be benevolent and compassionate humans. But after the first live trap yielded three mice, two of whom had consumed the other in their very brief time in captivity, we elected to catch and release them in a more metaphysical sense. Thankfully, a friend of ours owns his own pest control outfit, so we were fairly rapidly outfitted with the absolute most modern mouse-destruction apparati either of us had ever seen. (Seriously, there is nothing so modern, galvanized and menacing, even on Westworld.) We began hauling mouse carcasses from our basement like we were preparing for a rodent-corpse yard sale. Then, we settled into the task of identifying everything in the basement that had been infested and shat upon by the scores of mousies. We created an adjunct rule to Marie Kondo’s simple guidelines: Does it spark joy? Does it have mouse shit intractably and essentially incorporated into it? We ended up hauling about 40 percent of our meaningless accumulation to the dump, my beleaguered husband gray and sweaty while he carried box after box to our yard for sorting, cleaning, and destruction.

The following week, I started a new job. The thing I’ve come to realize about shitstorms is that no meteorological support exists for their prediction. Had I known what was coming, perhaps I’d have timed things better. But I didn’t, so I didn’t.

The very next week, my husband had his first-ever colonoscopy. I knew when the doctor walked in that something very bad was happening. My husband had a tumor, most likely adenocarcinoma. On the imaging from the procedure, the tumor was seething and monstrous — it was so ugly and strange that I felt like even someone in the parking lot of Cub Foods would have known it was cancer, absent any formal medical training.

It was about two centimeters long. At first this seemed modest, but I would later find out that one millimeter of a cancerous legion contains approximately six billion cancer cells, so his tumor was galactic in the scale of cellular biology. After a computed tomography scan, another growth was found in his lung, where the lymphatic system “dumps” from the colorectal area of his primary tumor. And so it was that, in the first few weeks after the colonoscopy, the doctors we saw thought my husband might have stage-IV adenocarcinoma. Really ignorant of all things cancer in those early days, I asked, “How many stages are there?” to which the doctor, realizing I was not also a colorectal surgeon and cancer specialist, paled and replied, “Four.”

Lungs are tough to biopsy, because getting them still enough to successfully hit a tiny mass negates the reason to treat the cancer at all. Breathing is important. But, four weeks after my husband’s initial colonoscopy, a supremely confident and terrifically kind surgeon was able to land on what turned out to be a six-millimeter moving target, and determine that it wasn’t cancerous. The cancer was contained in the tumor and two lymph nodes. The medical team determined that my husband had stage-III adenocarcinoma in his rectum. We embarked on an eight-month chemotherapy and radiation journey to attempt to eradicate the tumor, destroy the affected nodes, and keep my husband from dying in the process.

One might reasonably conclude that this is enough excitement for a single six-month period. But one would be wrong, and Tig Notaro’s insubordinate angels must have been just losing their shit. “TAKE HIS KEYS, CASTIEL!” etc. etc. I bet it was a hoot.

My father didn’t go gently into memory care. He went just exactly how you’d think he’d go: like you’d combined a Kodiak bear and Charlie Sheen and then cornered them with a stick on fire. He got thrown out of one, then two, then three facilities. (Technically, we broke up with one before they could break up with us, but that was because the writing on the wall actually entirely obscured the original wall.) One facility, to which we’d given a staggering mound of paperwork and an even more staggering pile of cash, called me after its nurse spoke to my father’s nurse to finalize care details, and said my father could no longer be accepted because they were sure he was going to escape the facility. As angry as I was, I was forced to acknowledge the fact that this was certainly, unquestionably the case. After just eight months, my father had moved into and out of more apartments than a Miami DJ. And, it bears mention, had approximately the same number of romantic embranglements. In some strange way, I feel a convoluted and lovingly maniacal pride for the man he is, and continue to be amused when people attribute his behavior to the Alzheimer’s. Sure.

At last, we found a facility that knew how to handle my dad, or perhaps the eight months of couch surfing finally wore him down, or, less amusingly, the disease wore him down. Likely, the combination of all three. But we found him a stable home at last.

Somehow, the unbelievable stress of caring for this complicated man had led me to forgiving him. I never believed that possible. I tried, for more than twenty years, and failed. But the pressure of everything that was happening was breaking me. I sought help, a counselor who specializes in trauma counseling, and finally put those pieces back together. The last time my father was admitted to geriatric psychiatry due to violent behavior was on his 72nd birthday — a little less than a year from his first move into a memory care unit. I brought him cheesecake, and sat with him for hours. I told him everything — how much I loved him, how angry I was at him, and how sorry I was that I couldn’t save him from this. He held me in his arms like I was a little girl, while I sobbed, and it all just settled into place: my father loves me as much as he is able, and any shortcoming in how much he’s able to love me has nothing to do with me. I understand. It’s incredibly sad, but I understand.

My husband’s cancer treatment was astonishingly effective — so effective, in fact, that he was one of the meager 20 percent of colorectal cancer patients that achieve a “complete clinical response” to the treatment, meaning that at the halfway point of his treatment, they could find no evidence — via scan or biopsy — of any cancer in his body. This March makes it three years. So maybe Tig Notaro’s angels are humbled, now. Maybe they rode the elevator home after work and shook their heads saying, “He actually does drive better drunk. I just can’t believe it. Every time. He is going to be just insufferable tomorrow.” In my mostly overlapping Venn Diagram of Science and Spirituality, even knowing exactly what medicines he took, even being able to describe precisely what procedures were performed, this felt just like a miracle. The whole miserable thing.

Except the mice. I’m glad Arctic wolves eat them. They deserve it.

1 Comment

Susan Pierson-Jordan

about 8 months ago

Being a fellow shitstorm survivor, I can relate. Living through this kind of storm changes you. Some of it good, some of it not. What I know for sure is that watching us navigate turned out to be pretty good for my kids. They are compassionate humans that try to understand that life is often hard for a lot of us. No doubt yours will be too. Love you madly 💗

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