Chemo’s Side Effect #2: the Trolley Tracks of Protocol

Worse than the fear of infection is the way a drug regimen encourages everyone to hand the whole treatment plan over to a calendar. Looking back, I’m reminded of the time I biked across a trolley track at too shallow an angle: my front wheel slipped into the groove, and suddenly the track took over the steering.

Because of the four-chemos-then-scans protocol, no one actually did any hands-on physical assessment of Ed’s condition in the last weeks of his life–just blood workups and labs. No one but us weighed him, or had any useful responses when I reported how his weight was plummeting. We, not the professionals, noticed his thrush and pressure sores, which no one had reminded us to watch out for.

The doctors and nurses never directly assessed the growth of the palpable and ultimately visible tumors, which would have told them without waiting for the scans that chemo was not stopping the growth of the bone cancer or the lymph cancer.

In short, the fact that we were doing chemotherapy acted as an excuse for withdrawing from more personal forms of doctoring.

Towards the end, I asked more and more often for help and guidance. I did not have the expertise to interpret Ed’s symptoms or predict how much longer he had, nor did it make sense to tell him my uninformed fears. I needed the voice of experience to explain to both of us what was taking place and what we could expect. But the oncologist stuck to the schedule: he was waiting for the results of the follow-up scans; after that, at our routine post-scan evaluative appointment, he would discuss matters with us.

We did not go to that evaluation. That evening, Ed kept a different appointment.

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