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Crazy Like That: Days of Fear

Updated: Oct 29, 2023

Part Three in the Death of Picante Saga {Springtime in hell} We were scared. And unused to being scared. At least this scared. Because we'd started to accept that life could be kind to us. Thanks to Kara's first clinical trial in the winter of 2022, her tumors had shrunk by an unbelievable percentage and she'd gone back to work that summer. Nurses stopped showing up at our house, clients started coming back to it, and Kara felt so good she flew to Denver to perform and judge in an air guitar contest. A month later, after The Oregonian ran a feature about her, she led the first all-woman opening act at the U.S. Air Guitar National Championships. Then kicked off the following week with an intensive online tech support course and an equally concentrated wound-healing program. Combined, her new projects added up to forty-hour work weeks stretching over a period of three months. By November, she was applying for remote jobs, practicing bass guitar in a band, and imagining, like me, that we were going to build a future together. Then a few days after New Year's Day, Kara learned her cancer was growing again. Over the following days and weeks, she canceled job interviews, took clients off her schedule, and forged ahead with a part-time office position she had previously accepted with enthusiasm. Once again, her massage holster fell into disuse and hung on a hook on the bathroom door in her office. Meanwhile, the scary medical appointments piled up as she tried to get into various clinical trials. This study didn't have openings for eight weeks... that study didn't take patients with low albumin levels... a high-stakes obstacle course. Nerve-racking enough even without mounting evidence that the tumors were coming back more aggressively than ever--at least from my point of view. By March, her right glute felt harder and looked more enlarged than I had seen it in over a year. And the wounds themselves suggested surreal, post-apocalyptic cityscapes shrouded in stringy yellow tissue. Sixty days of hyperbaric super-healing, and apparently this is what cancer with multiple genetic mutations can accomplish in a little over three months. And so we were scared. Extra scared. Because unlike four years earlier when Kara was first diagnosed, we'd gotten a taste of what our lives could be like. We'd talked about playing shows in small bars. We'd talked about collaborating on our third children's book. We'd talked about making real money like grownups. Throughout her cancer journey, Kara and I had striven to grow a rich, creative life together, and we hadn't backed off simply because some statistic somewhere suggested we ought to enjoy the relief and take all the selfies on all the Greek islands on our bucket list. Which meant that when we found ourselves back in the cancer terror dome, we struggled to reacclimatize. And this time we didn't have a full-blown pandemic to help us focus on the essentials of living with a stage 4 cancer diagnosis. Instead of simplifying our lives and conserving energy, we turned our attention outward, or at least I did. When the second clinical trial came along, I didn't even glance at the information packet--all I wanted to know was that we were going to fight tumors again. Granted, the status of those butt wounds haunted me. But still, I wasn't just thinking of the weather forecast for Kara's troubled insides. I was thinking of our "future" and how I didn't want to give up on what we had lined up for ourselves before the last CT scan. I wanted to continue to play music, write, study marketing, learn video editing... expand our opportunities. If Kara couldn't diversify for the moment, I would make the effort for both of us. I could do that and still take care of her while she delved further into experimental treatment. Not that she needed much help, anyway. She was always so strong by herself.

{Until she wasn't} And this is how you bring six men with a stretcher to your door. You deny your situation. You compartmentalize your worst fears. You confuse discipline with self-preservation. You grow rigid and unyielding. A hyper-aggressive project manager of all the wrong projects. As I mentioned in the previous post, the second trial drug stabilized the rectal site but at a high cost. In addition to heavy abscess/tumor flow through her wounds and lower orifices, Kara suffered from retching, nausea, breathing difficulties, anemia, and pronounced swelling in the face, neck, and shoulders. Her sleep patterns went haywire, her stoma became herniated, and her vision grew worse as she waited for long-delayed surgeries to fix the cataracts caused by her wound-healing program. She started getting weekly iron infusions and steroids to treat her swelling and shortness of breath. This led to hallucinations and days without sleep--seven in a row, at one point. A month into the trial, shortly after her shoulders blew up like the Incredible Hulk's, she stopped taking the drug, yet she couldn't shake its side effects. In early May, she checked into the ER with a 102-degree fever... and walked out the door on even more steroid treatments. More insomnia. A Pyrrhic victory in progress. One thing I have learned throughout Kara's cancer experience is that sometimes people--and the systems they create--are even worse than cancer. During this time, Kara waged battles with not only inept, but hostile financial specialists over surgical bills and diagnostic codes. More than once I came downstairs and found her sobbing over the phone at someone who refused to help her acquire the specialized supplies she needed to avoid crapping all over herself. (Months later, near the end of her life, she would say tearfully in her sleep, "So much has happened to me in public that shit doesn't do anything to me anymore.") Then there were the taxes. The absurdly complicated process of filing our income taxes. Concurrent with the second trial drug's side effects. Followed shortly thereafter by more sobbing over the phone--this time with her father. For the first time in twenty years, she could not find a way to make a payment on our now nine-thousand-dollar property taxes. She had never asked her father and stepmother for so much money before. But they said yes... a huge gesture for a child of trauma who had bounced from home to home and Section 8 housing in her twenties. Being homeless was one of Kara's greater fears. Along with being a burden on others, like her mother. The forces of bureaucracy, scarcity, and disease were piling up on her. And if all this were not stressful enough, our third and last pug, Cooper, was winding down. Getting trapped under the sectional couch. Falling down the basement stairs. Deaf, blind, confused, and probably full of cancer like his momma, hobbling and stumbling and soiling his way toward his seventeenth year like an Energizer Bunny from Pet Sematary. I have never cared for spring, and now I have good reason. It is the time of piss, shit, and leaky tumors. Between Cooper's incontinence and Kara's ostomy/wound seepage, I became not only chauffeur, errand boy, and resident wound care nurse, but also laundry aide, on-call pet janitor, and professional maxi-pad shopper. In addition to work and the Great Things that at least one of us had to pursue despite cancer trashing our lives again. In addition to more bureaucracy. Continuing education. DMV. Routine bloodwork. All work and no play makes Charles a dull boy... an angry boy... a laser-focused boy. The dog is dying, the wife is suffering, and the husband is thinking of Great Things like his horror script and YouTube content. Meanwhile, six men are cruising around Portland in a big red truck that will pull up in front of his house on a day soon to be announced.

{From a whimper to a scream} Next: Thirty-four days to destruction.

--Charles Austin Muir

Photo by Phoebus-Foto

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Dick Young
Dick Young
29 oct 2023

This is heart-breaking to read. I can't imagine what it must have been like to write. Thank you, Charles, for bringing to life this journey of the both of you. 💔

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Thanks for following, Dick. Kara shared the good and bad, the pretty and the ugly, and I want to carry that for her into the days she could not capture in her own words. There will be rough times ahead in this story arc, but also beautiful ones. She told her surgeon once that if she determined it was time to go, she would do it like a rock star. And she did. I am horribly unlucky and yet lucky to have been part of it.

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