Marathon to Hell

The end of this shitty, exhausting marathon will be worse than the running. I always knew that, but as it looms closer, it is even more frightening.

Dream

I had this dream. K & I were walking home together from a late meeting. I was so tired that I couldn't imagine doing anything but falling asleep. Then K told me we needed to give a lift home to a frail old lady. I fell asleep right there, walking, and hit my head as I fell. I woke up in a strange dream bed, disoriented and alone, crying for my wife. Then I really work up.

Priorities and Worth.

Three months? It seems like years.

I stopped blogging because the volatility of the household made me afraid of unintended consequences. Now I'm less afraid. Things are less volatile. Anger has blown itself out for the moment.

I am now putting more of my energy, attention and time into caring than into any single other thing. I am happy with this path of love and integrity, and it isn't really a change in priorities for me. it is, however, a change in what my priorities mean in practice, and it starves time and energy from everything else. It is taking time for me to adjust to the implications of this for my relationship to myself, my family, my community and my career. 

In my me-centered universe, I know that my changing ability to deliver for anyone other than K is really an Important Topic. People are losing sleep over my lack of delivery -- my lack of even showing up. Empires are crumbling. Right? Right? 

Maybe not. 

My sense of myself as indispensable needs some adjustment. I always tell people in professional settings that "everyone is indispensable, and yet no one is indispensable." And it applies to me, too.

Which leaves me with internal work to do. Those things that seem so important at work? Not that important, really. Not compared to what I'm doing for K. Someday, they might work their way up the importance food-chain again, but for now, I need to re-tune my internal monitor of self-worth, and that takes time.

Wise People Say

"You are going through a lot subconsciously that you don't realize you are going through," said a wise and experienced friend of mine, with whom I have shared many successful summits and cautious retreats. When I heard that, I nodded smugly and said to myself "sure, but I'll be mindful, and then I'll know what's going on inside."  Which is BS. Whatever I do manage to glimpse, there is always more that I don't see. I didn't see my own misdirected anger, and my own need for control, and how they drove (and are presumably still driving) my reactions to this shitty disease marathon.

I suppose the lesson is that I should always remain open to the possibility that my reactions are being driven by some obscure process, and remain committed to responding thoughtfully rather than reacting "righteously." Like so many lofty goals, this will be impossible to perfect.

Another wise one said "you can't push and you can't pull, you can only walk beside." No control, just presence. Cancer as an extended, fucked up exercise in compassion and mindfulness. For a closeted type A problem solver, this is a slice of hell. I have trouble listening to the emotion and disconnecting from the content. I hate shit that can't be fixed.

All of which is to say that I can now look back a little on the past year and the past four months, and gain a slight (very slight) degree of perspective. And if that helps me be some of what K needs, I'll take it.

Morning Confession

Confession: I don't always go  straight to work.  On days when I don't have a 9 o'clock meeting, I go to my local green-branded coffee shop, where The Barista knows what I want and gets it for me with a smile. I watch people passing through on their way to and from work or the gym. I do what I want to do, within the limits of a cafe table, my MacBook Air and a decent wifi connection. I set my own priorities for a moment, and push the clock into the background. I act like there's no pressure.

This morning, I am seriously pondering not going to work at all. In my LA fantasy, I just drive to the mountains and breathe for a few minutes. Maybe I drive up to the snow line and feel the sharp breeze. We'll see. Don't rule it out. Life is precious.

UPDATE
I love the mountains, and that's where I spent my afternoon. Funny how a few trees and some snow can make me smile.

Job Drift

I am struggling to remember that my role as carer does not make me a comprehensive mediator between my wife and the world.

There are some interfaces I need to handle, and some I can't, or shouldn't. I need to cut her meat in the restaurant, or set a pick for her in Costco, but that doesn't mean that I need to explain her behavior to friends or strangers, or try to protect her from her own impulses.

After so many years together, I feel a little joint ownership of K's opinions, plans and actions. I expect them to be familiar, even if they're uncomfortable. Cancer has changed that. The disease, the treatment, and the angst are pushing her to new, more-extreme places. And when she acts from those places, my comfort and my joint ownership are challenged. No, they're gone. My impulse is to apologize, to explain, to mediate, to do anything to get us out of an uncomfortable situation.

I am a conflict averse person. I am professionally tasked to interpret conflict and turn it into progress. Pain to progress.

Here, in Cancer, there is no progress. The roots of the pain are deep in intractable disease. The best I can do is be mindful and watch for caring opportunities. Not opportunities to avoid conflict, or to explain K away for other people, but the opportunity to provide true comfort. Easier said than done.

Mr. In Between

When she's down, I need to be up. And when she's up, I want to be up. All this up is getting me down. I can't sustain the pace.

I write about this because it seems paradoxical that when her side effects are under control and her cancer is temporarily being quiet, I still feel like I should curl up in a ball and sleep for a week or two.  She, on the other hand, is bouncing around and reveling in reduced pain and somewhat-less-imminent death. It may only be the metastatic-cancer-lady-with-1.5-lungs equivalent of bouncing around, but it is still not the same as a nap.

I feel bad that I can't match her, with a spring in my step and a song in my heart. The sense of relief is eluding me. Upon reflection staying average is he great goal of the caring marathon. Not so low in the lows (spending), not so high in the highs (saving) -- playing the "long game." Still, when she wants to play, I have to crank up my excitement and just try to be happy, which is an effort. If I don't keep up, I can see that I am mystifying her and hurting her feelings.

Lacuna

I think that my period of silence can be traced to a combination of intensely disturbing, if fleeting, episodes in the PSYWAR, rapid changes in my own moods and feelings, and a total absence of "me" time. Today I finally broke down and just wandered out of work for a couple of hours to experience idleness.

K has finished a 3rd round of Xeloda. Its side effects (HFS & nausea) are mounting, but it also seems to have given her back her lung capacity. At least it seems reasonable for me to believe that her revitalized breathing is due to some abatement of her mets caused by the X poison. The nice thing about X is that it can be easily titrated, and at least one paper relates that reducing the dose does not reduce the benefit. Long may it reign.

But more about me: rather than supporting me faithfully in my roles as carer, breadwinner, father, husband, son, brother and synagogue VP, my body is now rebelling. Prostatitis, hemorrhoids and backache have joined a tension headache that has been my own for decades. In some sense, this gives me a tiny taste of what it's like to be chronically ill, but any gains in my caring ability caused by this increased empathy are most likely cancelled out by loss of efficiency and general whininess. (You'll say "take care of yourself," and I am doing my best to exercise, eat and sleep, but there are limits to the benefits of even those magical tonics.)

One of my holiday visitors suggested that an effect of the PSYWAR (in which carer becomes enemy and is fiercely attacked) is for the carer to experience firsthand a degree of the disorientation and hopelessness experienced by the patient. It's another way of fine tuning empathy, if you can survive it. Fortunately the past two weeks have been free of this difficulty; carer and patient are working together as a team, struggling through the days.

And so I find myself bunking off work, doing yoga in the gym, soaking in the hot tub, and blogging in Starbucks. Feels good, actually.