The List

K is in  pain, short of breath, and easily fatigued. Nevertheless, she has a 21st Century to-do list that only grows.  Every entry is urgent, for obvious reasons. But is every entry important? That's in the eye of the beholder.

Due to her's limitations, The List progresses slowly, and it draws us all in. I help. E helps. Sometimes we can help but don't want to. Sometimes we want to but can't. We fall in and out of synch with The List's demands, just as we would in Normal Life. But  this is not normal life, this is Cancer Life, and in Cancer Life, every success or (more often) failure carries an exaggerated emotional load: satisfaction, guilt, frustration, fear, regret.

Because The List feeds on our life force,  E and I are constantly second guessing it's contents. Why this hinge oiling? Why that gift giving? Why is The List so precise in its expectations? Particularly, why does The List demand so much from Karen, when she has so little to give? Couldn't we just burn it?

I question The List silently, because I have learned that nothing good comes from challenging it. My own list is jealous of The List, and I am learning to manage that relationship. E is a teenager. All lists are anathema  to his way of life. He knows that he should give in to The List, because this is Cancer Life, but sometimes he shows his frustration, which leads to recrimination, and presumably guilt.

The List and its consequences dominate our days, which is not entirely bad. Other interactions manage to sneak into the gaps, or ride along on the back List items. We watch an old movie together, snug on the couch, enjoying family time. No less enjoyable just because it is Listed.  We sneak out for Sunday Starbucks breakfast, just me me K, because The List takes Sunday morning off.  We watch Chelsea on TiVo because The List has already sucked all the energy out of her.

I admit it, I am a list-driven person myself. I am Getting Things Done with my 7 Habits whenever I can. I have come to understand how to purge the unimportant weeds from my list. I've learned to put resting and living on my list. I know that my list will always be growing. That's a fact of life. Of life.

I imagine that a different conscious or subconscious logic drives K's list. How could she die when there is so much shit on The List still needing to be done?

Long Live The List!

Jeff's First Law

It's the law:

There's no limit to how fucked you can be.

This rule first came into sharp focus between Thanksgiving 2010 and Thanksgiving 2012. My wife's mother died and then I lost my job in the same week, people would say "at least it can't get any worse." Then the breast cancer diagnosis came in. Then my son got suspended from school. Then my dad died. Then my father in law died -- all in a period of basically two years.

Conclusion? There is no natural limit to the arrival rate of crises in a modern life. That's the "Full Catastrophe." Not something unexpected or cruel, just the statistical result of numerous unrelated, semi-random processes working independently.

From a 30 second Google search, it appears that the "full catastrophe" was first articulated by Zorba the Greek (now I need to watch the movie):

Am I not a man? And is a man not stupid? I'm a man, so I married. Wife, children, house, everything. The full catastrophe. 

You see? Just normal life. Jon Kabat-Zinn picked up the term for the title of his book on mindfulness and stress reduction. When I can follow his suggestions, and get myself to accept the full catastrophe mindfully, not trying to fight it and push it away, I at least don't add (too much) to my own pain.

Whenever I hear someone say "you're due for some good luck now," I remember Law #1, and I remain mindful. I try not to get invested in the narrative of "it can't get any worse," because I know that's not true.

I had written much of this post before I got K's call yesterday that she had been in a car accident (no major injuries, except to the car and the flow of the day). So I just remembered the law, took a deep breath, re-routed my day and hung out with my wife in a coffee shop while waiting for a tow truck. Not so bad, really, this so-called catastrophe.

You may glean from my tone that K and I have moved on a long way in the past two weeks. That's what this journey is like. Just wait a few days. Things will change. But don't assume it will be for the better. Remember Law #1.

Little Boxes

I have a short morning commute (for which I am grateful) and a short Spottify playlist to go with it: Pete Seeger's version of Little Boxes, RHCP's Snow [Hey Oh!], and U2's It's a Beautiful Day.  Not very creative, but we're not here to critique my DJing skills, we're here to talk about Little Boxes.

I initially chose it to comfort me in my chaotic life, because it makes "normal" sound so banal and unappealing. I may have a life of complexity, pain, love, and surprises; but it sure beats the ticky-tacky conveyor belt. On a strong day, I listen to Pete and embrace the weird and wonderful full catastrophe of my life.

At the moment, with my energy down and the catastrophe in full swing, the song struck a more wistful resonance. Wouldn't it be lovely to lie on a chaise longue waving languidly from the parade float of the 1950s American Dream? Sunny so-Cal and perfect pastel tract houses. Golf,  martinis, summer camp and university. No cancer, no side effects, no teenagers, no college applications! That's so bad?

A strong folk song that supports me either way.

Squalls and PSYWAR

I remember an April day Karen and I spent on Dartmoor back in the late '80s. In the middle of that sunny spring morning, a dark squall blew in, with low clouds, hail and eventually snow. Just as quickly, the unbeatable British blue sky returned, and the sun beat down. Again and again the storms drove through, then blew themselves away, leaving a fresh-scrubbed blue world.

That's how the past 24 hours have been. Dark gusts of accusation and despair strung with intermittent deceptive domestic calm. I put down my umbrella and take off my raincoat just in time to get soaked in the next shower.

Cancer's Psychological Warfare continues.

[Postscript: when the sun comes back out after a storm, it's hard to remember what all the fuss was about. Could it really have been a life and death struggle just a moment ago, or was it just a slightly embarrassing overreaction? As in the mountains, so in Cancer PSYWAR.]

Not me. Not her.

I get hit by great gusts of anger from my wife. These days, It seems that the best I can hope for is a forced smile and an artificial "good morning." It's all down hill from there.  Intellectually, I get it. Cancer sucks. Cancer hurts. It makes her angry. But cancer is not around to shoulder the blame in person. I am. 

In the abstract, this transference of grief and anger to the closest person sounds manageable. Too bad I don't live in the abstract. Where I live, the love of my life lashes out at me--at my motivations, my actions, my commitment. My being is under attack from the most important other being in the world. This is not a role playing game where I stand in for Sucky Cancer and she takes pot shots at me. This is real. My defenses kick in. I strike back, making it worse. In the heat of the moment, I let my anger at Sucky Cancer focus on my wife. 

Unless I can remember my mantra: "Not me. Not her." 

These storms aren't her attacking me, they're not-her attacking not-me.  Have I done anything that would merit this scale of attack? Not-me. Has she ever shown such venom towards me during all the ups and downs of our 30-year relationship? Not-her. 

I'm not a dualist. I believe that the collection of organic chemicals opposite me is indeed my wife, but cancer, stress, drugs, and gamma knife are having their wicked ways with her. Although she desperately wants to be "normal," she is not 100% her old self. Who would be? It's relatively easy for me to conclude that she is "not-her."

It's a bit harder to remember and convince myself that the person under attack is "not-me." I search myself for faults that would justify my ending up estranged. I am not perfect. Presumably, Sucky Cancer is taking a toll on my personality, too. I am sure I have voiced painful, hurtful things that I would take back. I'm doing my best, but I'm human. Over the years, though, I've come to recognize in my life that some problems I'm involved in are intractable, and that's not my fault. Not me.  

So when I feel myself under attack, like this morning when I learned that she will "never show me what's behind the mask," and "only ask you to do things when there are no other options," I work hard to remember:

"Not her, not me." Cold comfort is better than none.  

 

Let's Get Started

My wife is dying of metastatic, triple-negative breast cancer. Barring unexpected shifts in the probabilities of life, she will predecease me, fairly soon. A crescendo of psychic pain accompanies this process, the white-hot, searing, level-1 core of pain that is my wife's knowledge of her impending death, and the lesser circles of agony that surround her and burn away at those who love her.

I'm in level 2. In my level, I attempt to abide by The Rule articulated in the Silk Ring Theory:

Dump out. Comfort in.

If only it were that easy. Having built a loving relationship for 30-plus years based on two-way, mutual comforting and dumping, switching it to a one-way street is just not natural for either of us. At this stage, she won't dump out, or let me comfort in, and I dare not dump in or expect comfort out. We are growing isolated from one another, as the disease inexorably drives us to two different destinations.

"It's a truism that metastatic cancer is worse on the carer than on the patient," she said to me last night after berating me for folding the towels wrong (or perhaps stacking them wrong. I'm still not sure). "It is a truism," she continued, "but you have no idea how hard this is for me, and if you did, you would take better care of me and do more for me." (Including never folding or stacking towels without detailed, step-by-step guidance.) This jab hurt my feelings so much that I proceeded to dump in, to engage a painful and fruitless argument.

Now that I have had time to reflect, I can agree definitively that I have no idea what it is like to have my own cells running amuck in my chest and my brain, laying designs on my liver and my heart. My body trying to kill me. No idea how it feels to know that 2020 is beyond my years, and--statistically--2016, too.

Perhaps she's right. If I did know, I would figure out how to provide my wife more comfort by never questioning her judgment and always turning to her for detailed guidance before trying to execute the most basic household helpers' tasks. I would figure out how to undo 30 years of mutual training and build a fresh relationship based on the One Way sign.

But I don't know. I have no idea.