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.
Friday, January 30, 2015
Friday, January 23, 2015
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.
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.
Thursday, January 8, 2015
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.
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.
Tuesday, December 16, 2014
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!
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!
Wednesday, December 10, 2014
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):
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.
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.
Tuesday, December 2, 2014
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.
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.
Thursday, November 27, 2014
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.
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.]
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