You find nothing heroic about this phase of recovery — nothing uplifting, inspiring or creative. Pain, nausea, distress, infirmity — your symptoms sound like worn-out themes from some overwrought existentialist novel. Your aching distress is like a creature that’s taken over your insides. It never rests and demands all your attention. You don’t want to credit it, but you cannot ignore it. It seems to isolate you from every joy around you.
You’re sunk in a dilemma: the first dose of the opioid they sent home with you causes immobilizing nausea. The over-the-counter medications you alternate taking every three hours do little to alleviate your distress. You’re forced to submit to this raging creature. Your innards, from anus to abdomen, are seized by a vice-grip — vigor now reduced to enfeeblement. “What possible good can come from this?” you wonder. You call the surgeon. He tells you to stop taking the opioid and reminds you, “You’ve been through major surgery, you’ve lost twelve inches of your colon; recovery will be a slow, but sure thing.” Yeah — sure thing.
It’s now ten days after surgery. You meet with the surgical team in Boston for a follow-up session. The head surgeon takes one look at you and says, “most people look like they haven’t even had surgery when they see me at this point. But you — you look like a beat up and worn out man, trying to get healed.“ They question how you’re handling the recovery process and tell you what you should or shouldn’t be doing. They tell you to quit taking your tejperature and urge you to exercise more, even though, when you’re not flat on your back with pain, you’ve been walking up to a mile per day.
As the directives pile up, you begin to feel like you‘re the big failure in this recovery marathon. Nobody stops to question whether the heavy dosage of radiation you had two weeks ago or the major surgery itself might be contributing to the problem. It’s one of those doctor-patient sessions where you get the feeling you have to talk fast because these guys are moving on as soon as they can finish with you. A moment later the team is on its way — and you’re left to go home and do better.
But throughout the next week, nothing gets better. Your pain mounts to the point where you try to get some oxycodone down again, just to gain some hand-hold on a bit of comfort. In a few days, you’re back down in Boston, this time to set up a regimen for chemotherapy. On the way, you and Elizabeth decide that this cannot go on: the pain management program is in tatters. Someone on your care team has to sit down with you, listen to what’s happening and not interrupt by telling you all the things you’re doing wrong even before you’ve finished your story.
Happily, your meeting is with the medical oncologist, a quiet, thoughtful man whom you admired from the moment you met him at the initial care-team meeting a month before. You tell him you need someone to hear you out on the issue of pain, and he does just that. Almost the first thing he suggests is a CT scan to eliminate the possibility that something had gone wrong in the radiation or surgical phases. You’re grateful that he spends the time he needs to understand your agonizing dilemma.
It all makes for a very long day in the hospital, but at last you arrive back at your friends’ home on Beacon Hill. You’re thoroughly exhausted; all you want to do is settle back and relax. Then, your phone rings. It’s the oncologist, calling with the news that today’s CT scan revealed something significant: there is a large abscess – six centimeters long — that has settled just above the surgical reconnection of the colon with the anal passageway. “This must be the cause of much of your pain,“ he tells you. “We’ll need to admit you right away; we’ll get you on antibiotics and drain the abscess as soon as possible.” Welcome to Christmas in the big Boston hospital!
So, it wasn’t you, after all. You weren’t the reason you were losing the battle with this wrenching pain. It wasn’t because you weren’t walking enough, or not hydrating sufficiently or not doing complying with all that the surgical team insisted on.
So, there it is: stark heroics ultimately bested by careful listening and compassionate understanding. And for that, you are deeply grateful.
You’ve never had a major illness before. You’re not always sure how to handle it. But you’re making some provisions. You’re taking on some ideas, attitudes and convictions and you’re adopting them — provisionally, of course — as you make your way down cancer lane.