November 16, 2013 - The Best Gift Nobody Wants

There's a great deal of wisdom in this brief (3 minutes) TED Talk from 2010, by cancer survivor Stacey Kramer. It expresses a viewpoint very similar to my own, when it comes to the unexpected gifts cancer can bring. (The last several minutes are a commercial you can skip.)

November 10, 2013 - Ping!

I am in the hospital - Ocean Medical Center - although I'm glad to be able to say it has nothing to do with a recurrence of my lymphoma.

I'd been having problems with shortness of breath of late, and it got so bad that I asked Claire to drive me to the Emergency Room. Various scans revealed a diagnosis of pulmonary emboli, or runaway blood clots - one in each lung - and another one developing in my lower right leg.

I was actually relieved to hear that diagnosis, because when a guy in his late fifties starts gasping for breath, there are other, more ominous possibilities that spring to mind. My heart, they tell me, is fine, and I've got the blood pressure of a young man - so say the hospital techs who wrap the cuff around my arm several times a day - so, this mechanical blockage seemed to be a relatively simple problem to address. A pulmonary embolism can do real damage, even causing sudden death, but generally, once such clots are lodged in the tree-like airways within the lungs, they dissolve on their own. It's a waiting game, augmented by medication (and, in my case, by surgery to install a small "filter" inside my vena cava, to catch any clots that may break off and start sailing the bloodstream).

The up-and-coming clot in my leg is of greater concern, because clots that break off from such a location can end up not only in the lungs, but also in the brain (stroke) or in the heart (heart attack).

The decision was made to treat me with blood-thinners - warfarin (Coumadin) pills as well as something called Lovenex that they taught me to inject myself with, because I'd likely need to keep up with that therapy twice a day at home. "Lovenex for the love handles," is what they say - because that's where the tiny hypodermic syringe's needle gets inserted.

I'd been in the hospital for a week, on oxygen and a heart monitor (just to be safe). I didn't feel especially bad, and the supplementary oxygen really did help. The decision had just been made to send me home, so Claire was in the room helping me pack my things. Sitting in the bedside chair, I began to feel lightheaded and to experience some pain in my abdomen. They laid me back in the bed, and I began to hear two words, over and over: "rapid response." Suddenly, everyone but me had been whisked out of the room, and I was surrounded by hospital staff and little carts with electronic gadgets on them.

The blood-thinners had led to an abdominal bleed. I can recall feeling fortunate that this had happened while I was still in the hospital, and not on the way home. I would later learn that it was likely caused by one of those Lovenex needles that missed the soft roll of the love handles and pierced some muscle instead. But who's to say?

There followed the single most agonizing night of my life. The doctors - a new breed called hospitalists, who monitor patients on behalf of other doctors like our family practitioner David Cheli, who now sees patients only in the office - had prescribed morphine for pain. But it wasn't enough. My nurse was holding rigidly to pharmacy protocols (as well he should, for a narcotic), but I was needing another dose about twice as frequently as he was allowed to give one to me. He stood firm in the face of all my entreaties, and Claire's as well, who had decided to spend the night in the bedside chair.

My begging must have become so piteous - I can recall punctuating my plea with the phrase, "I beg you, man, by everything that's holy" - that he finally did contact one of the hospitalists on call, who sent word to switch me to intravenous Dilaudid. That stronger medicine helped some, but I was still riding the downslope of its effectiveness about an hour before the next dose was permitted.

I don't suppose it was easy for him to see a patient in such agony, pulling myself as high up onto the bed rail as I possibly could (the least painful position) - and he did seem to be a genuinely caring individual - but there we were, both caught up in an inflexible and somewhat arbitrary system.

No minutes ever moved more slowly than the last 15... 10... 5... 1... before the nurse was at last able to inject a new dose of Dilaudid into my IV line. As he would leave the room to do whatever nurses need to do in the middle of the night to access the hard stuff, he didn't always think ahead (or was perhaps distracted by the needs of his other patients), leading to my getting my medicine dose not merely on time, but even a little late. Those extra minutes seemed an especially unfair addition.

Yes, I know narcotic addiction is a very real thing in our society, and there are some who would eagerly raid a hospital dispensary in the middle of the night to feed their habit, but it does seen a shame that such protocols would cause even a minute of delay for a patient who is in severe pain for legitimate reasons.

It's also a shame that a nurse would feel the slightest hesitation about tracking down a doctor on call, to see about switching pain medications, but I could tell he was inclined, at first, to stick close to the hospitalist's original orders. Such is the elaborate pecking-order of the healthcare system. Who knows - maybe he'd been stepped on by a doctor's outsized ego sometime in the past?

What's the point of asking patients about their pain level, on the proverbial scale of 1 to 10, if nobody does anything meaningful with that data?

Anyway, I didn't mean to go off in this direction, talking about pain management, but recalling my story brought that miserable night back home to me.

What I did mean to write about - and still will - is a thought I had while lying in my bed on the Critical Care Unit (which is where my pulmonologist, Dr. Gustavo De La Luz, insisted I be taken the next morning, as soon as he was on the case).

I was wired to all kinds of monitoring devices, and was very aware of the small screen just over my left shoulder that recorded my heart rate, respiration and all the rest. From time to time, that screen would emit a soft "ping," indicating something worthy of note.

I realized, then, how a return visit to Susan Sonntag's "Kingdom of the Sick" is very much an encounter with the radical present. For the past two weeks, everything going on in my life by way of future plans has been rendered irrelevant. The longer-term past has some continuing significance, to be sure, but only with respect to matters such as medical history. People like me wearing hospital gowns have shed any status or position they may otherwise enjoy in society. It doesn't matter how we'd planned to spend our time before experiencing this medical detour, because all such plans have gone out the window. We are cases, now, and the medical institutions that seek to heal us do so through relentless attention to the present. The future belongs to the well. For the sick, it's all about the present.

Lying there in Critical Care, I took note of the electronic sentinels silently watching the most critical of data, issuing that soft tone to call attention back to the inescapable present. Back in history the jagged lines on the screen extend, but only until a new present intrudes. As for the future, that remains offscreen.

Back in a regular hospital room as I now am - missing church on this Sunday morning and awaiting word on options for physical therapy to regain my strength, it looks like I'm going to be living in the present for a while longer.

Ping.