Getting Settled in Unsettling Times

Things for us are hard.

The cancer patient I referred to a few months ago is actually my husband. At the time, I was getting pretty sick of explaining what had happened all over the place online, so I kept that blog entry short and sweet because things were still so raw for me. When I started writing this post on the 16th, he came home from his 4th inpatient treatment (5 solid days at the hospital every 3rd week), and I expected that he’d be sick as a dog because they’ve upped his concentration of drugs for the second time and it’s already hitting him harder. (ETA: He was, though it doesn’t last for more than 48 hours.) It’s funny – I wrote that DIY ensure ‘recipe’ because I was expecting him to be like all the other cancer patients I’ve known and heard about and all but lose his appetite, but through this whole thing his hunger stayed the same. The one thing I’ve learned is that cancer is an extremely personal, individual disease. No two patients are alike, nor their side-effects, nor their treatment. He hasn’t even lost all his hair, though this time around I suspect his nausea and appetite will be more typical.

Two weeks ago we met with his oncologist and were shown a pair of CT images: one from before he started treatment, and the other at the halfway point, and the difference was flabbergasting. The first image, taken from an angle that we hadn’t seen before, showed a tumor that was bigger than a grapefruit, growing from sternum to spine, winding its way around his windpipe and heart, and collapsing his right lung. For all intents and purposes, he should be dead. It should have given him a stroke, cardiac event, something. But it didn’t. I’m a deeply spiritual person and have my theories – I think he’s starting to form some theories of his own. The amazing doctors at the BC Cancer Agency may cure him, but they’ll never be able to give an answer for why a tumor that big and caused by a lymphoma that rare and poorly understood didn’t take his life.

But life goes on. I got my confirmation of permanent residence while he was in the hospital for his first round of treatment. I imported my car and half of my belongings while he was in for his second. We made trips to IKEA to buy furniture, usually the hallmark of a happy new life for most couples, while we were in the midst of accepting the ever-present possibility that his condition might take an unexpected turn for the worse. For the better part of 3 months we’ve straddled the line between joy and despair, never quite belonging to either. Never quite having the energy or wherewithal to tip over to one side or the other.

In many ways, I feel like our interest in collapse theory, and narrative themes of such, has prepared us to handle this better than a lot of people. The staff at the agency talk about us, we’ve been told – how he’s the youngest patient they have, how I’m an even younger spouse and caregiver, how little we seem to be affected. I think they’re expecting us to snap one of these days, break down at the enormity of what this has done to our lives. What they don’t know is that we see the struggle against cancer as a uniquely modern manifestation of the human condition, a kind of fight against ourselves. Even though his grayzone lymphoma is largely a misfortune of genetics, our understanding of most cancers is that they are environmental in origin – we largely have our greed and carelessness to blame.

Case in point: a UK study predicts that 1 in 2 adults will get a cancer diagnosis in their lifetime, in spite of the billions of dollars we pump into research and treatment. The mortality rate in developed nations is falling, but the rate of diagnoses is going up. It seems, in spite of our best efforts, that more people are developing the disease, while we dump ever more money and resources into finding a “cure”. Cancer is a disease of progress in the most fundamental sense: unstoppable growth. I’m skeptical that technological progress will ever provide us with anything more than palliative care and life support for a population increasingly suffering from chronic misery. In his book Why Things Bite Back, Edward Tenner talks about this shift from acute conditions, which humanity endured for most of its existence, to chronic conditions, when it made the Faustian bargain to try and rid itself of acute mortality. The former can be dramatic and shocking, but the latter requires a vast industrial infrastructure to provide life support for millions of people suffering from slow deterioration into mental and physical debility. It’s hard not to be reminded of stories about mortal man seeking out immortality, and how there’s always a catch to achieving it. Always.

We had a conversation about how it felt to be fighting cancer in a world like the one we live in, one ravaged by overpopulation, one hopelessly addicted to unsustainable and toxic forms of energy, one being emptied of its wild biodiversity and filled with things made by humans that exist now as ends unto themselves. We talked about how, if we want any sort of a world to be left for our grandchildren to inherit, then letting the earth sit fallow, to be left alone, is the only way it can happen, and the only way to do that quick enough is death. But here we are, clinging stubbornly to life – hypocrites. What we decided to do was to respect cancer. Deeply and utterly, for fulfilling its purpose on this earth so well. My husband realized that he could still fight his enemy, and do it with honor. Cancer versus human, evenly matched.

What we have that cancer does not, though, is community. And it is this community, these relationships, that will ultimately save my husband’s life so that he can go on to face another foe some other day, and fully enjoy what precious moments there are in between.

Nesting zero waste and minimalist-style has helped to save my sanity countless times over the course of this fight. It’s been really easy to get overwhelmed by even the most rudimentary household chores, and sometimes things get neglected because neither of us has the energy to tackle it. Having systems in place and relatively few possessions has been a great help. Little things, like twist ties for corralling stray cords, or having the disinfecting wipes in the right spot, helps me avoid feeling suffocated by clutter and chaos. My dislike of chaotic surroundings has increased practically tenfold since this started, and making sure that everything has its place goes a long way to making me feel relaxed.

There’s a concept in modern polytheist and some pagan religions (Hi polytheist followers from my other blog!) that has helped me a great deal in dealing with my environment and relationships called miasma. It’s a Greek word, and it refers to spiritual pollution- a state of being that prevents you from properly communing with the divine, to put it succinctly. Lots of mundane things can make you spiritually unclean: deaths, births, exposing yourself to certain ideas or people or media. It’s not a bad thing so long as it’s dealt with, but like neglecting to wash your hands after taking a crap, it becomes a problem if you don’t.

Cancer, and the chaos that ensues from living in the limbo it creates, is definitely a state of mental and emotional pollution. And unless you take conscious, pointed steps to keep that muddying at bay, it will have the effect of making your life something like hell. So keep clean.

His last round of chemo ends on December 28th, and Christmas will be spent in the hospital. He will be a completely different man by January 1st, which is only a few weeks shy of his 40th birthday, and he will definitely be stronger than he was at his 39th. I’m proud to be married to him, and I’m in awe of his resilience.

“It would be the death of you to come with me, Sam,” said Frodo, “and I could not have borne that.”

“Not as certain as being left behind,” said Sam.

“But I am going to Mordor.”

“I know that well enough, Mr. Frodo. Of course you are. And I’m coming with you.”

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