LIVING IN MY MEMORY
Originally posted at ASCO Connection on 9/29/2017
Starting a new job is always stressful – the move from one institution to another, getting hospital credentials, obtaining provider credentialing for various insurances, meeting new staff, and adjusting to a new work “culture.” Having done my share of moves, these are nearly universal experiences. However, as I find myself walking around the hallowed halls of Rhode Island Hospital like the proverbial chicken without a head, I also find my thoughts drawn back to the patients I’ve left in Boston.
There is Jane*, a young 42 year-old with ovarian cancer, who had come to her first appointment with her children and husband. I still remember how stoic she was, and how aware she was of the situation she now faced. She underwent treatment with cautious optimism, aiming for a cure. As I departed she was without evidence of disease at 15 months.
I think of Sara*, a sprite 82 year-old woman with recurrent endometrial cancer, who had tolerated adjuvant treatment poorly; she had developed perhaps the worst case of shingles I had ever seen during her fourth cycle of chemotherapy – so bad that we abandoned further systemic treatment. She was without disease for only 10 months, but had prolonged stable disease on hormone therapy. I had started her on chemotherapy and referred her to my partner for continuing care.
I also think of Gabby*, a 60 year-old former ballerina who travelled to see me from Cape Cod. We had met when her cancer recurred and together we had embarked on clinical trials. The first treatment lasted for almost 14 months – a period of prolonged, stable disease that saw a return to her garden and beloved beaches. At relapse, she started on a different clinical trial therapy. As I left, she had been on treatment for four months and was doing well. As with others in my clinic, saying goodbye to these women was difficult and showed how strong doctor-patient bonds can be.
Sadly, as is still the case, not all of the patients who filled my thoughts were the ones doing well in the months before I left. And perhaps it was because I was leaving, I had told them that it was their time. I was able to refer some to hospice, but others were not ready to hear this news, and instead, concentrated on continuing treatment. Such was the case with Jo*, diagnosed with advanced uterine cancer two years previously. We had hoped she would be cured with a combination of surgery and chemotherapy, but within a few months of completing my prescribed treatment, she had recurred with a bowel obstruction and ascites. I gave her a targeted treatment and she did incredibly well –she had no evidence of cancer within a few months and had regained her baseline functional status. She remained in remission for over a year, but in the past few months had showed signs of disease progression, which was ultimately confirmed with imaging. We talked about treatment options and decided upon a course of palliative treatment. She had received three doses by the time I was closing my practice, and unlike her last therapy, she did not bounce back –instead, she got frailer, ultimately requiring hospitalization for constipation, abdominal bloating, and anorexia.
At one of her last appointments, I talked with her and her son about her disease.
“How do you feel you are doing?” I asked.
“I don’t feel well, but I know you can fix me – you did it before!” she replied.
I remember pausing as I heard that. “Well, Jo, I wish I had a miracle in my pocket – or a Superman cape in my closet. I want nothing more than to help you feel better,” I said, which made her laugh out loud.
“But, I made you a promise when we first met. I told you that if I felt I could not help you any longer, or if I felt that you were dying, I would tell you and not keep it from you. Do you remember?”
She stared at me for a moment, but eventually acknowledged it. “Yes, I remember you said that to me,” she said.
“Well, Jo,” I continued, reaching for her hand and looking in to her eyes. “I think it’s time. I don’t think I can help you any longer.”
She cried then. “No, I don’t accept that. I am not ready to just give up and die. There’s got to be something we could try.”
Knowing I would not be here to follow her, we decided it was best to refer her to my partner for further discussion. “I think he will take great care of you,” I told her. “But, I also think it’s critical that we get you some help in other ways – to help with the pain, control the nausea, and to give you a sounding board about how scary all of this is right now.”
“I would like that,” she said.
“Let me refer you to palliative care,” I said. After some discussion about how palliative care was different from hospice care, she accepted the referral. I still remember that visit and the big hug that came as I said goodbye.
“Pray for me,” she had said, and I told her I would – and that I would not forget her.
I ended up getting a call about Jo a few days after I started at Rhode Island Hospital. She ended up getting readmitted soon after her last chemotherapy with a bowel obstruction and severe pain. She opted for comfort measures and died in the hospital peacefully. My final conversation came back to me, and I wondered if things would’ve been different had I been there still. Maybe she would’ve done better –maybe she would still be alive. But, then I remember, I am only human, not superhuman. I still do not have a cape, nor magic bullets to administer.
I often wonder if patients know what it’s like to leave a clinical practice for us as clinicians – if they wonder if they ever cross our minds. I hope with this blog I can answer that not only for myself, but for my compassionate colleagues who have chosen medicine, and specifically oncology. We do remember you, and think about you often – probably more than you could imagine.
*Names and details changed to protect privacy.
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