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.