The patient doctor: Leaving my MRI distraction playlist behind

Aug. 12, 2022 marked the end of my stereotactic ablative radiotherapy treatment for prostate cancer. The final foray into the MRI/linear accelerator hybrid was not dissimilar to the previous four but it was conclusive. As the table began its outward journey, tethered as I was to the conveyor, with headphones secured as a distraction, I listened to the last song of my CSNY playlist, ‘Out of the Darkness.’ And then I was. It had been two and a half weeks since the therapeutic ordeal began, five sessions lasting close to one hour, immobilized by purposeful restraints and fear. This was unknown territory as I had only transiently dabbled in the rarified atmosphere of being a patient. My perspective for the previous five decades had been a compassionate and supportive one as doctor. No one ever mentored me on how to be a patient. Assuming this new identity can at times leave one feeling as imposter. It is only with time that there evolves a relative comfort. It requires an openness with oneself, a kind of surrender to the realities which are stark and perhaps, life changing. It took a village of radiation oncologists, fellows, nurses, technologists and therapists to shepherd me through the treacherous therapeutic terrain and deliver me to a new life beyond the gantry. In some ways, they have ghost-written my story and for that, mere gratitude will never be sufficient. When I walked out of the Odette Cancer Center that afternoon with my wife, I stopped, took off my mask, inhaled deeply and felt suddenly enveloped by a kaleidoscope of memories of recent weeks and months. These would remain vividly implanted and frequently revisited even as I entered the recovery phase of my disease process. There were forever reminders that never entirely allowed a seamless transition to a new and disease-free normal. A PSA in three months followed by a clinic visit was the first of the mandated protocols. In the days leading up to my first post-radiation PSA, I was angst-ridden. I was overwhelmed by ‘what-if’s’, unable to see through a reserved and clouded optimism. The opening PSA back in March of ‘22 had been 9.15. The November post-radiation followup was 3.28. My Oncologist was encouraged by the result and reassuring. “See me in three months” were his next words. In February ‘23 the PSA continued to drop, now down to 1.13. “See me in six months” were his parting words. The one year followup in August ‘23 showed a further reduction in PSA to 0.55. Six months later in January ‘24, the PSA had gone below the “threshold”, now 0.29. The “subnormal” value of PSA is considered a “cure” with negligible risk for recurrence, or so I was informed. “See me in one year” were words I hadn’t expected, not at this juncture. It would be a virtual visit, no need to come to the clinic. A followup was set for January 2025! I had difficulty processing the “one year” timeline. ‘What ifs’ came surging back, bringing into question an unrealistic potential for recurrence locally or distant in the absence of a regular, reliable and timely marker.I recall patients, who when told they could have their blood pressures checked every three months instead of monthly utterly rejected the proposal. Needing the reassurance more often, they would say, “I’ll see you next month, too bad for your luck.” Or the patients, when told they could discontinue the surveillance screening for cancers: paps, mammograms even PSAs, totally objected to my explanation of the recommended guidelines and demanded the reassurance of previously regular “routine” testing. I had to remember that “guidelines” are not edicts. It took me some time to accept my “yearly” followup as evidence-based and clinically warranted. The concept of patient-not-doctor needed reinforcement. I would have to adjust to the “yearly” scrutiny for the next three years all the while diligent, cognizant of the flags of vibrant colour. Life returned to normal. We travelled to our favourite desert respite one month after treatment ended and spent a wonderful two weeks redirecting our thoughts and energies to positive and meaningful pursuits. It was not lost on us that our previous Palm Springs visit had been pre-empted by the unscheduled arrival of a pandemic, now but a distant memory but still one with a propensity to disrupt and impose its will on the unsuspecting and ill-protected. We spend much time at the cottage these days, walking in the mornings with friends, reading on the deck, writing stories and making time to walk down to the dock and watch the magnificence of another sunset. We travel to spend time with our son and grandson in Boston, our daughter and granddaughter and son-in-law much closer in Toronto and we plan and initiate travel to foreign lands which fulfill and realize our bucket list dreams. I have written much about my transition from doctor to patient. Somehow, writing about it, has been therapeutic in and of itself. Sharing my story has been restorative, a veritable catharsis. It has allowed me to move beyond the gantry, a restrictive and discomforting venue with unimaginable healing powers. When first I ventured into the shielded confines of the MRI/LINAC suite, and before I was propelled into the constricting tunnel, the radiation technologist asked what playlist I had chosen to distract me from the cacophonous clanging of the MRI unit. On one particular day I chose the Eagles, generically and arbitrarily selected. Late in the session, and anticipating being extracted any moment, on came ‘Hotel California.’ The iconic piece ends: “You can check out any time you want”“But you can never leave.”I left the gantry two years ago. I have looked back to see where I have been. And, I have plotted the coordinates to where I am going.

The patient doctor: Leaving my MRI distraction playlist behind

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HOWARD GOLDSTEIN

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