Some thoughts on living and dying.

An update.

            It’s Thanksgiving weekend and I’m once again repeating myself:  No one has more to be thankful for than I do.  I have a fabulous family, a wonderful job and a life that’s filled with life. Despite the dire warnings from the nation’s medical elite, most of my days are good; many are even great, filled with meaningful interactions with the extraordinarily interesting people who surround me in life and online.

But I haven’t felt much like celebrating for the past couple of weeks.  After so many good months, I feel like I’m slipping.  Starting last spring I could feel the days getting better as they got longer.  The summer and fall were better than I ever could have wished for.  Now…not so much.

I should expect times like this.  After all, hospice is by design a time of gentle “slipping.”  Once again, my old feelings are intruding.  Once again, I’m not scared of death; I’m just frustrated—very frustrated—with feeling sickly.  I don’t want to make too much of that:  it’s still about discomfort and not pain. I’ve been spoiled by the good times.

Now I almost never get through a whole meal–even the tiny snacks I now think of as meals– without puking up some phlegm or having to go some place to lie down.  (It helps when I make ice cream a “side dish” to help melt the problem away.  Even knowing that, it’s hard to remember to put out the ice cream when we’re dishing out the main course.  I only remember it when I need it.  Stupid.)

Of course, this could just be a bad month. But I have to ask:  how many times can I pull off my “near death” experience?  Do I have any credibility left?  (As Jeff Goodby told me this week, “you’re just never going to f——die, are you?”  Well, that’s the plan, Jeff.)

A little something from 1987.

My old friend, the uncontrollable, indefatigable Brian Collins, got this chain going.  It’s awfully nice.

“Minor horrors and humiliations”

If I were you, I wouldn’t read this post.  A friend has asked me to describe any pain I feel in my current condition.  He wants to know the symptoms I’m experiencing.  These are things I normally only tell my doctors, nurses and Ginny—not because they’re secret but because they aren’t things I’m normally interested in.   (I am, of course, more interested when I’m experiencing the symptoms—but as soon as they quiet down, I’m on to something else.)  I use Christopher Hitchens’ description of his symptoms as a basis for comparison.  (I love his “materialist proposition that I don’t have a body, I am a body.”) 

I generally agree with Hitchens that “nobody wants to know” about the daily humiliations of the body.  I’m undoubtedly telling most of you more here than you care to know, so feel free to skip this one.  I know I would.

(Besides, when I re-read it, I can’t tell if it makes things sound worse or better than they are.)

I actually feel very little pain—at least not in the sense of sharp, stinging or biting pain.  I’m more likely to feel discomfort and, sometimes, anxiety.

Christopher Hitchens wrote this about his symptoms and I’ve added my notes in bold:

“It’s normally agreed that the question ‘How are you?’ doesn’t put you on your path to give a full or honest answer. So when asked these days, I tend to say something cryptic like, ‘A bit early to say.’ (If it’s the wonderful staff at my oncology clinic who inquire, I sometimes go so far as to respond, ‘I seem to have cancer today.’) Nobody wants to be told about the countless minor horrors and humiliations that become facts of ‘life’ when your body turns from being a friend to being a foe: the boring switch from chronic constipation to its sudden dramatic opposite (I’ll only say I know what he’s talking about.); the equally nasty double cross of feeling acute hunger while fearing even the scent of food (I don’t fear the scent of food, but it’s very frustrating to know that some things I want to eat will immediately complicate my breathing and cause congestion in my chest.  When that happens, I immediately get teary-eyed. I’m not crying, it’s just that my eyes feel like they’re squirting water. It’s a miserable feeling.) ; the absolute misery of gut-wringing nausea on an utterly empty stomach  (I’ve had some of that, but it’s rarely “gut-wrenching”) ; or the pathetic discovery that hair loss extends to the disappearance of the follicles in your nostrils, and thus to the childish and irritating phenomenon of a permanently runny nose. (The runny nose thing is especially bothersome because I’ve usually got oxygen being pumped directly into my nose.)  Sorry, but you did ask… It’s no fun to appreciate to the full the truth of the materialist proposition that I don’t have a body, I am a body.”

Back to me, a little less bold:

On my bad days, I feel uncomfortable all over and just sickly.  At different times, I’ve had horrible bouts of hiccups (I never knew hiccups could be horrible), headaches, and shaky hands.  Going up steps leads inevitably to major breathing difficulties.  Sometimes just bending over or standing up will knock all the wind out of me.  It usually takes a very long couple of minutes to recover.  I give myself shots twice a day—and even though I move around the placement of those shots, I’ve started getting little bruises.   My ankles were swelling for a while.  We think cancer’s invaded my liver now; there are some weird little side effects from that.  Sometimes I feel just plain worn out. 

 The sickest time was January in NYC.  I haven’t vomited except during one 36-hour period in May, when I vomited a lot.   I was mainly throwing up liquids that had accumulated in my lungs.  (I was hospitalized for a couple of days.)

The morphine helps in two ways:  it reduces pain and anxiety (discomfort) and it clears passageways.  I have no idea how it does that:  probably just by relaxing the muscles.  (That’s a guess.)  

Most of the time, I don’t look sick or sickly at all.  My vital signs have generally remained fine.

For some reason, I’m feeling better today than I have any day in 10 months.  Not sure why.  In fact, the past few weeks have been really good overall.


Cancer can be exhausting. 

Cancer can be exhausting.  Some days even if I can’t sleep I don’t want to get out of bed or do much of anything.  I can’t even get in the mood to read or to write.  I feel a little sorry for myself.  I wonder how long this hospice thing can go on.

A couple of weeks ago I could barely summon the strength to walk one block to wish a very good friend well as he enters  retirement  after 20 years or  so at the agency.  I love the guy.  Many of my closest friends were there.  I stayed for about five minutes, then made the “long” walk home.  Where I crashed.

Then I have a day like the next one–so much better. I shave and shower, I clean up some of the messes I’ve made over the past few weeks.  I fix myself a simple little lunch.  Take a little nap.  Go to the agency for an executive committee meeting that lasts two hours.  Take the two-block “long” walk home.  Crash for an hour.  Then dinner and a little tv with Ginny.  A little nighttime reading.  I’m surprised that I’m still having trouble sleeping, but I’m not complaining.  The day was great.  Really, really great.  I know this doesn’t sound like much, but days like this give me new energy.  I start thinking I can do things again.  I feel like maybe I’ve got something to say on my long-neglected blog–and, better yet, maybe I’ve even got the fire to do it.

It’s been a couple of weeks since I posted much of anything here.  For me, writing takes concentration and more than a little wilfulness.  But it never seemed to take much energy.   Now it does–and energy has been in short supply lately.

I saw the doctor a week ago and got a good report.  He doesn’t think I need any kind of treatment.  The tumors are spreading, but they’re still growing slowly and aren’t causing any particularly worrisome blockages.  He wasn’t surprised my energy level’s down:  I am, after all, dying.  But the good news is, he won’t be shocked if he’s still seeing me six months from now.  (I’m getting a little greedy for good news.  I was actually hoping that the scans would reveal some fixable minor problem involving swallowing or breathing.  I’d love to see some improvements there.)

So once again I face the question:  what do you do if you have a few, but only a few, months to live–and you don’t know how much vigor you’ll have on any upcoming day?

Jason’s family visited for a few days last week.  That’s always great.  I only wish I could have mustered the strength to really engage with them.

Most days someone from the agency stops by for an hour or so.  But for the last few weeks I’ve probably cancelled about half the visits.  I hate that.

Last Thursday started as another great day–the kind of day that helps me appreciate the wonderful things in my life past and present.  It helps me get excited about the things coming up that my family and friends are excited about.  Jason, Carley and Ella have a new home, a newly expanded bakery, Jason’s job at the college.  Ginny’s excited about the second home she’s making for herself in Beacon.  (Richmond will still be her first home.)

But then Thursday night, six hours of vomiting and a bumpy post midnight ambulance ride to the hospital.  Four uncomfortable nights there.  I’m home again now.  Jason and Ginny are both here.  I don’t know if I should report here on the gross stuff; vomiting doesn’t make for fun reading or storytelling.  Since there was no blood, it wasn’t even particularly dangerous.  Still, I suppose this is part of the process.  We get sick for a number of reasons I guess. I suppose symptoms helped us take care of ourselves and helped us evolve.  I’m about 6-foot-4.  I often see men my age and height stooped over constantly.  I now walk slower than I ever have before.  I always knew those days would come for me, but I anticipated them at 80, not 65.  My hands are shaking again and that makes it hard for me to sit at the keyboard.  On the  other hand, I know I’m exaggerating all this.  I’ve never had to worry about losing my natural beauty anymore than I’ve had to worry about losing my graceful way on a dance floor.  I look and feel surprisingly healthy for a man who is somewhere between 6 months and 9 years overdue for the great reckoning.

Once more unto the breech.

Judging by the comments I’m receiving here and through email, I’ve left some people confused about a couple of things.

First, I’m speaking here entirely on my own.  The agency isn’t “encouraging” me to do this.  (In fact, I bet my dear partner John squirms a little bit at my candor here and there.)  I’m doing this for friends and family–people I love.  I know some other people are listening in. and that’s fine as long as they don’t hold my personal beliefs against anyone other than me.

I never meant to imply that my life before Prozac was gloomy or sad.  In fact, I can’t remember a time when I didn’t love life.  (And, no, I didn’t replace God with a pill.)

I started this blog to keep interested friends informed about my health.  Along the way, there was much encouragement to detail my thoughts as I face death.  It turns out, even a nonbeliever has trouble describing dying without getting around–sooner or later–to religion.

I do appreciate how much joy, strength and comfort many people get out of their religions.  Some of the finest people I know are committed to their faith.  A Catholic priest made a huge, positive difference in my life when I was in high school–a Catholic, military high school.  I share with many of those same people a sadness that religion is so often corrupted.  I think most people want to belong to a community of thoughtful, considerate  people who share joy, love, family and life.  I know how lucky I am to feel that I am part of a community like that–it’s just not a religion.  In fact, it’s not organized at all.   It’s populated by the hundreds of people who have been writing me and wishing me well.  They’ve made what should be one of life’s hardest ordeals something close to joyful.

And, by the way, many of them are very religious people.


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