For physician-turned-patient, ‘the lines are forever blurred’
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Editor’s note: This is the first in a series of five stories from ASCO Voices, a session during ASCO Annual Meeting focused on the human side of oncology.
Samantha Siegel, MD, clearly remembers the first time she and her family hit the so-called “cancer lottery.”
It certainly didn’t feel like a win.
Her husband, Sam, who had experienced life-threatening complications from autoimmune liver disease, developed testicular cancer while completing medical school.
“People said, ‘If you have to have cancer, this is the one to have.’ They were trying to be reassuring and hopeful,” said Siegel, an internal medicine specialist with Kaiser Permanente Medical Group. “We were confused. It didn’t feel like we’d won a cancer lottery. It felt like a grenade to our beautiful but already complicated lives.”
The ‘worst, best gift’
Siegel recalled quietly sobbing and massaging the wedding rings off her husband’s swollen hand as he lay unconscious on a ventilator. At one point, she heard the ICU team remarking on her “difficult family” — a family of doctors with a number of legitimate questions.
“I wondered, is anyone ‘easy’ when their loved one is dying? Yet I continued doctoring through it all,” she said. “Achieving was coping. We got through transplant, and then Sam finally had his first good year. Life began to develop a cadence. We even thought about taking a vacation.”
The vacation was not to be, not that year. Instead, the COVID-19 pandemic hit, followed by Siegel’s own diagnosis of stage II Hodgkin lymphoma.
“Cancer is the worst, best gift,” she said. “I was healthy before mine — a marathon-running, breastfeeding-at-work, doctor mom. At first, I was in denial. I thought the hacking cough was just from the California wildfires.”
The confirmation of Siegel’s cancer was mitigated somewhat by the fact that Hodgkin lymphoma has a 90% cure rate.
“It was another winning ticket in the cancer lottery,” Siegel said. “So, I braced for 6 months of ABVD [doxorubicin, bleomycin, vinblastine and dacarbazine] and told myself it would be over, but it was brutal. Chemotherapy felt like rotting from the inside out. In a few months, I went from healthy to a ‘pain everywhere’ kind of patient. Despite daily vomiting, I gained 40 pounds.”
‘Seeing my humanity’
After a clean posttreatment PET scan, Siegel’s physician asked if she planned to go on that vacation she’d been anticipating. This led Siegel to wonder whether she should be feeling better than she was at that point.
“So, I gave myself 1 month to get off all the pain and nausea medications, which I took exactly as prescribed,” she said, “but the rapid shift in brain chemistry sent me into a mind-bending depression.”
Despite the depression, Siegel knew she had no desire to die — she had just spent 6 months fighting for her life. So, she exercised, ate healthily and held on, waiting for the feeling to pass. After a month, she began to feel better emotionally but noticed the reemergence of physical symptoms.
“My lungs started wheezing again and my lump reappeared,” she said. “This time, after two inconclusive biopsies, a thoracic surgery confirmed relapse, and I started the road to transplant.”
She underwent 3 months of targeted therapy, followed by cyclophosphamide to mobilize her stem cells. The treatment worked, but the road to recovery was harrowing for Siegel.
“I peed blood clots for 2 weeks — every urination was like crowning a baby,” she said. “My kids said they knew my cystitis was improving because I wasn’t screaming as much from the bathroom. I worried I was traumatizing them. Finally, I was admitted for transplant.”
The physical effects of the treatment were grueling for Siegel, who vomited for 50 days. Late one night during her hospitalization, she felt she was going to vomit again, but there were no more medications available.
“My nurse said all of his other patients were sleeping, so he pulled up a chair, put a cold rag to my bald head, and distracted me with stories until my next dose of Ativan. He didn’t leave me. I’ll never forget that.”
On days when Siegel felt well enough, she walked the halls of the hospital listening to hip-hop music and chatting with the staff. She painted and played guitar.
“I never wanted them to stop seeing my humanity,” she said. “There were moments when I felt connected to my body by only the tiniest little string, and all I had to do was let go and it would be over. I feared leaving my family. I saw death. It was everything and everywhere, like sunlight scattered through trees, and it changed me.”
‘Her magic lives in me’
Today, more than 2 years into the “cancer lottery,” Siegel is in remission and almost finished with posttransplant therapy. Yet she will never forget that feeling of hanging onto her life by a string.
The true “win” from her cancer experience was the gift of clarity and perspective it gave her, she said.
“My thoughts have been fixated on one question,” she said, “Have I given and received enough love in this lifetime?”
Siegel said she has thought about what she would truly miss if she left this world: her children’s gap-toothed smiles; her husband, who, due to his name, Sam, earned the couple the collective nickname Sam-Squared; her brother’s brave transition from methamphetamine addiction to a stable life as a family man; the shift she’d experienced in her relationship with her mother. She said she would also miss the new friends she made in her blood cancer support group, fellow patients and survivors whose perspective she now understands completely.
“These are some of the most alive people I know,” she said, “I remember my best friend from the blood cancer support group used to say to me, ‘Sam, I just want to be fully alive, until I’m not.’”
That friend died a month ago, at the age of 26 years.
“Her magic lives in me now,” Siegel said. “I want to use my voice in medicine to bring her love and light to survivorship.”
Siegel is pursuing internal medicine so she can fulfill her dream of building a comprehensive cancer survivorship program. She aims to justify the need for a distinct board-certified specialty dedicated to those living with and surviving cancer, and to shift the focus from mortality to vitality.
“I want you to see us patients for the whole people we are in the context of our lives, for the incredible lengths we have to travel just to stay here,” she said. “I want you to know that when we email you a question, we’d rather be binge-watching Netflix or be out jogging. We’d love to not need you this much.”
Siegel said her newfound personal understanding of a patient’s needs has made her a better person, and she is hoping it will also make her a better doctor.
“There’s no going back to the old me, but I’ve made peace with that,” Siegel said. “Now I’m a better version — a slightly broken-down but fully awake, more hopeful and loving version. I’m proudly a doctor, but I’m a patient now, too. The lines are forever blurred.”
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“There is no cancer lottery.” ASCO Voices Session. Presented at: ASCO Annual Meeting; June 2-6, 2023; Chicago.
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